2012 Public Comments on the National Plan for Alzheimer's Disease and the National Alzheimer's Project Act

07/01/2015

Table of Contents

DECEMBER 2012 COMMENTS

NOVEMBER 2012 COMMENTS

OCTOBER 2012 COMMENTS

AUGUST 2012 COMMENTS

JULY 2012 COMMENTS

JUNE 2012 COMMENTS

MAY 2012 COMMENTS

APRIL 2012 COMMENTS

MARCH 2012 COMMENTS

FEBRUARY 2012 COMMENTS

JANUARY 2012 COMMENTS


DECEMBER 2012 COMMENTS

DATE:  December 25, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

Although the official comment period has closed for the NAPA draft plan, I'm writing today to urge you to go bolder with the final plan to be released by HHS later this month.

Alzheimer's is a cruel disease. It slowly steals one's intellect, ability to communicate, independence, and dignity, even control over basic bodily functions like eating and caring for personal hygiene. It also places an overwhelming burden on caregivers -- emotionally, physically, and financially.

The commitment to a 2025 deadline in the draft NAPA plan represents a major step forward in the fight against Alzheimer's. I am pleased that the plan recognizes the need for increasing enrollment in clinical trials, compressing the drug development process, accelerating targeted research, and better coordinating activities with other countries.

However, I am one of many concerned Alzheimer's advocates who believe that this first draft fails to present a strategy aggressive enough to achieve the goal of preventing and treating Alzheimer's within 13 years. It lacks specificity in terms of timelines and deadlines, provides no path to providing significantly greater resources, and does not hold a single high-level office or individual accountable for the overall plan.

I hope that HHS will address these issues so that the next version of the plan will be bolder.

With the number of Alzheimer's patients expected to triple in the coming decades, we must embrace a plan that eschews a "business-as-usual" approach and tackles Alzheimer's with the urgency and aggressiveness it requires. If not, we stand to lose millions more lives -- and trillions of dollars -- to this disease.

Thank you.

Sheila L. O'ConnorSan Francisco, CA

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NOVEMBER 2012 COMMENTS

DATE:  November 30, 2012

SUBJECT:  NAPA FAC meeting on the 15th

I understand that the FAC meeting for the 14th and 15th has been abridged to the 14th. Either Seth Keller or I will like to offer comments during the comment period on the 14th. Could you slot us in.

Thanks,

Matthew P. Janicki, Ph.D. Co-Chair National Task Group on Intellectual Disabilities and Dementia Practices http://www.aadmd.org/ntg

PS - By the way, I've attached an Italian version of our NTG report that was recently released. The Italians took our NTG report and translated and accommodated it for the situation in Italy related to dementia and people with intellectual disabilities.

ATTACHMENT:   LIBRODISABILITA'-11'19'12.pdf

Available as separate links:
Dimentica la Disabilità e Guarda Alla PersonaDimentica la disabilità e guarda alla persona

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  November 22, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

Although the official comment period has closed for the NAPA draft plan, I'm writing today to urge you to go bolder with the final plan to be released by HHS later this month.

Alzheimer's is a cruel disease. It slowly steals one's intellect, ability to communicate, independence, and dignity, even control over basic bodily functions like eating and caring for personal hygiene. It also places an overwhelming burden on caregivers -- emotionally, physically, and financially.

The commitment to a 2025 deadline in the draft NAPA plan represents a major step forward in the fight against Alzheimer's. I am pleased that the plan recognizes the need for increasing enrollment in clinical trials, compressing the drug development process, accelerating targeted research, and better coordinating activities with other countries.

However, I am one of many concerned Alzheimer's advocates who believe that this first draft fails to present a strategy aggressive enough to achieve the goal of preventing and treating Alzheimer's within 13 years. It lacks specificity in terms of timelines and deadlines, provides no path to providing significantly greater resources, and does not hold a single high-level office or individual accountable for the overall plan.

I hope that HHS will address these issues so that the next version of the plan will be bolder.

With the number of Alzheimer's patients expected to triple in the coming decades, we must embrace a plan that eschews a "business-as-usual" approach and tackles Alzheimer's with the urgency and aggressiveness it requires. If not, we stand to lose millions more lives -- and trillions of dollars -- to this disease.

Thank you.

Donna BeningPlano, TX

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OCTOBER 2012 COMMENTS

DATE:  October 14, 2012

SUBJECT:  What it's like to be in my shoes

I would also like to share with your team a modified article that I had originally written for the World Alzheimer Report 2012. Since that time I had the opportunity to take a 3 week vacation which I truly loved. At the same time it pointed out new weakness in my skills and I realize I have declined a bit more. There was a time that I can follow a map and could easily get from point A to B. Unfortunately this time was different. I had to continuously rely on my wife who was not quite used to taking on this challenge. When I look at the map, I just cannot focus on an area and I just keep seeing all of the streets. You also need to keep into memory where you are coming from and what was the last cross streets, which again I cannot retain. Unfortunately my frustration was passed on to her because I expected her to perform at the level I once could. It's not easy living with a dementia person.

Then there was looking at the menus, I just could not seem to look at menus and make sense because I was being confused by it being into different languages even though one was English. For one reason or another I just could not process that information and had to rely on my wife to know what I like to help me make a choice.

Then there was the train stations. I looked at the boards completely confused and not understanding what my wife was seeing on how and where to get our next train. I just went along for the ride and thank god she knew what she was doing. These are all things I have never had to rely on anyone. In fact I was the one being the leader in my business and personal life when it came to those types of things.

I also use to have a great sense of direction without a map and almost never got lost. But I realized that in order to do that you need to be able to retain when and where you turn so you can keep track of direction. It seems that I lost that because I had to tell my wife to figure out where we were many times. She was not use to that which placed a lot more stress on her. It seems that more and more things are starting to fall on her shoulders and that is a very big burden to have to carry. In fact I realized to late that I had over burden her with even making this trip, which I was once very cable of doing or at least sharing the load. There was so much planning involved and it all fell one her because I cannot even be a bouncing board to check for accuracy anymore.

I always walked around with this fear that I might get lost in a crowd from my wife. But that's why I always made sure to have the business card for the hotel I was staying at. I am telling you all this and sharing the article below because we all hear all the medical terms around dementia issue, but I really believe most people are clueless when it comes to truly understanding what dementia people really have to deal with. I learned this first hand dealing with the supposedly expert health reporters. I want people to become educated and realize that while our disability is not visible, it is by far a very true disability. I hope this will be useful to your team. As always I am willing to speak about this openly and be completely honest no matter how embarrassing it may be.

----------------

"The Realities of Alzheimer's and Overcoming Stigma"

Alzheimer's disease and other forms of dementia affect more than 35 million people worldwide today. An astonishing fact that today someone in the world develops dementia every 4 seconds. By the middle of the century more than 115 million people will be affected by the disease if we do nothing.

My name is Michael Ellenbogen, and I am living with Alzheimer's and trying to make a difference. I was previously a high-level manager in the telecommunication industry. In 2008, I was diagnosed with younger-onset Alzheimer's disease (YOAD) after struggling to get a diagnosis since my first symptoms at age 39. Losing my job and not being able to work had a huge impact on my life as I was a workaholic. I am now an Alzheimer's advocate and a spokesperson for the Alzheimer's Association (U.S.) as a member of its national 2012 Early-Stage Advisory Group.

I am so frustrated, because no one realizes how seriously disabled I am. If I had a loss of limb or some other visual ailment, it would make people realize. I don't want them to feel sorry for me or pity me, just want to be understood. So many people say you do not seem to have Alzheimer's, and that frustrates me. Let me tell you what it's like to live with this debilitating and progressive disease.

Imagine for one minute that your friend, relative or family member has Alzheimer's and has to deal with the following issues. When I go shopping and look at items, most of them never really register in my mind, even though I see it clearly. I have trouble making decisions, because I question whether I am making the right one. I can no longer enjoy my favorite hobbies, because it requires processing skills that I no longer have. I went from being a gadget person, to now being threatened by technology that I no longer can use. This is what I deal with and so much more.

I go to a happy affair only to be tortured by the noise and surrounding conversations, because of the loudness that cannot be filtered out. If people try to speak with me in a public setting where there are many other conversations, I just don't understand what they are saying. This is because all of the people speaking come in at the same volume level. All the words run together, and it sounds like a foreign language.

I went from being extremely proactive to becoming much less active and motivated. I leave things around the house and don't put them away, because I don't know where they go or feel I may not know where to retrieve them again. One moment I am nice and another I may fly off the handle. I can no longer write or speak like I used to. My friends slowly become distant and usually speak to my wife. I do realize this.

I worry every day about the challenges ahead. Or even worse, I am losing my mind and see it happening, but I cannot do anything to change the course. People always say 'if I can do anything just let me know." If I take them up on that offer, they back out of their commitments. I have become extremely surprised by the lack of public commitment to my pleas for support of Alzheimer's disease. While some may be sympathetic in the moment, there appears to be little follow-through. This is very upsetting, because I feel as though it affects me personally as well as the millions of others living with the disease. I was always there for others when they needed it and now I feel alone.

While many people just coast through the day, I have to use 110% of my processing skills to do most things, which increases the stress and frustration. The worst part about this disease is knowing that I am doing all these things wrong and have no way to control or stop it, and it's only getting worse as the days go by. I used to save lots of money by doing so many things around the house. Now I lost the drive, determination and skills needed to do those things. Many times I hurt myself trying or make it worse.

I cannot begin to explain how it tears me up inside to see my spouse struggling to do the things that I once was capable of doing and know I cannot do a thing to help. I realize that one day I may no longer be able to drive and this devastates me. I see my wife becoming stressed, depressed and overwhelmed, but caregivers know it will only continue to get worse. Sadly, they keep telling themselves that they can do it all even when we know they will need help.

I, the patient, see it definitely. My wife is on the road to hell, and she does not even realize it yet, because she is so busy trying to block it all out. The worst part about all this is, I have not even reached the worst stage. That scares the hell out of me.

I have been so surprised by the stigma associated with this disease. It comes at you from all angles. People think they knew what Alzheimer's is, but they don't. I see this not only from people living with dementia but many media health correspondents, physicians and organizations that are geared to helping those deal with the disease. I have learned that I do not want to share my diagnosis with people I meet until they get to know me. If I was to tell them upfront, I would be treated so differently, which I have learned. I kind of see this disease like HIV use to be. The people who have it are so afraid to let others know, including family. I do not get it. We did nothing wrong to get this disease, and we need to speak up to let our voice be heard. We did nothing and no one should be ashamed of having it. I feel so much better when I share it with others than when I try to hide it.

Because of my frustration with existing environment for people with dementia, I realized change was need. I decided to use my few skills left to advocate. I have spent some of my last few years being on television, radio, newspapers, many blogs and working with many politicians. I also had an opportunity to speak at all of the public sessions to develop the first U.S. National Alzheimer's Plan, all this on my own. But that was not enough, because I ran into so many people who just did not want to get involved. I am now a volunteer for the national Alzheimer's Association Early-Stage Advisory Group. If there is something I want you to walk away with it's that you can make a difference, but it will take persistence. Write a letter to your public official or reach out to local support organizations to create needed programs and services. Your voice and your story are powerful tools. Please get involved.

The simple truth is, if you have not been touched by this devastating and debilitating disease yet, consider yourself extremely lucky. Sadly, it's just a matter of time before it touches you. It is my hope that my actions today may prevent future generations from suffering with this disease. So give yourself piece of mind and do something today. I hope that what I am doing will allow me to leave this world knowing that I did everything possible to make that next generation have a fighting chance. There are no excuses for not wanting to help. The human cost factor is too high, and we are all accountable to do something.

There are many organizations out there like ADI and the Alzheimer's Association that can help you. The Alzheimer's Association got me started in many ways with my new journey. It not only helped me, but it also had helped my wife as my caregiver. They have a website with many resources at http://www.alz.org. I encourage you to reach out today if you have not already. I would also encourage you to educate yourself.

Please join me and Go Purple. I wear a purple Alzheimer's bracelet every day. And for those living with Alzheimer's, stop focusing on what you cannot do and join me in the battle to advocate. We still have so much to give, and we need to use our skills at our own speed. There is nothing to be ashamed of. I, and your loved ones, are counting on all of you.

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money"http://www.michaelellenbogen.comhttp://www.michaelellenbogenmovement.com/

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DATE:  October 5, 2012

SUBJECT:  October 15 Meeting Attendance

Good afternoon -- On behalf of the Council on Social Work Education (CSWE), I am submitting the enclosed written public comment for the October 15 Advisory Council meeting.

Dr. Darla Spence Coffey, CSWE President, plans to also provide oral comment during the meeting.

Please do not hesitate to contact me with any questions.

Wendy A. NausLewis-Burke Associates LLCWashington, DC

ATTACHMENT:

On behalf of the Council on Social Work Education (CSWE), thank you for the opportunity to provide written comment on the National Plan to Address Alzheimer’s Disease.

CSWE is a nonprofit national association representing about 2,500 individual members as well as nearly 700 graduate and undergraduate programs of professional social work education. Founded in 1952, this partnership of educational and professional institutions, social welfare agencies, and private citizens is recognized as the sole accrediting agency for social work education in the United States. Social work education focuses students on leadership and direct practice roles helping individuals, families, groups, and communities by creating new opportunities that empower people to be productive, contributing members of their communities.

CSWE thanks the Department of Health and Human Services (HHS) and the Advisory Council for incorporating into the National Plan goals and strategies aimed at building a workforce equipped with the necessary skills to meet the needs of those living with dementia, including Strategy 2.A: Build a Workforce with the Skills to Provide High-Quality Care. It is critical that supports and additional training be provided to workers already in practice to ensure that they can adequately meet the needs of those they are serving. However, we remain concerned about the preparation of the future workforce. The goal of producing a workforce that incorporates all necessary players--including social workers--with the necessary skills cannot be achieved without enhanced investment in recruitment, training, and retention of students in the health professions who will be working with older adults. The workforce pipeline must be considered if real progress is to be made and sustained.

To this end, CSWE strongly endorses the recommendations made by the Advisory Council in May 2012 that call on Congress to appropriate additional funding for health professions workforce programs. In particular, we strongly support the Clinical Care Subcommittee’s Recommendation 8, which urges the prioritization of geriatrics education and training programs, including the Title VII and Title VIII programs at the Health Resources and Services Administration (HRSA), as well as loan repayment and other incentive initiatives. While social work is recognized throughout the Plan as a contributing member of the care team, without the workforce investments recommended by the Council, the social work profession will not have the capacity to meet such demand. It is estimated that by 2050, the number of social workers needed in long term care will grow to approximately 109,000 (nearly double the current workforce in this area) (DHHS, 2006). In 2009–2010, only an average of 5 percent of all social work graduates completed a specialization in aging (CSWE, 2011).1 This number of graduates cannot begin to meet the workforce demands, especially in light of the retirement of increasing numbers of geriatric social workers. The social work profession will undoubtedly reach a breaking point if new investments are not made today to nurture a social work pipeline that generates a new crop of professionals skilled to work with older adults and specifically with the competencies to work with those with dementia and their family caregivers

Second, as an organization guided by an educational mission, CSWE plays a central role in the development and dissemination of curriculum covering a variety of practice areas. Through our John A. Hartford-funded National Center for Gerontological Social Work Education, we have enhanced the capacity of faculty and prepared students with competencies to work effectively with older adults and their families We applaud the Council’s recommendation that HHS partner with health professions programs and organizations to work toward the development and use of geriatrics-specific curricula and would be eager to help disseminate such curricula to our member programs. CSWE has begun conversations with HHS on how we may be able to contribute on behalf of the social work education community and we welcome opportunities to ensure the dementia capacity of our faculty members and their students.

Thank you for the opportunity to express these views on behalf of the Council on Social Work Education. CSWE is hopeful that the updated National Plan will address the pipeline concerns highlighted above. I would be happy to provide additional information about CSWE and our efforts to promote geriatric competencies among social work students. Please do not hesitate to contact me with any questions.

Sincerely,

Darla Spence Coffey, Ph.D.
President, Council on Social Work Education

  1. Council on Social Work Education (CSWE). (2011). 2009 Statistics on social work education in the United States. Retrieved from http://www.cswe.org/CentersInitiatives/DataStatistics/ProgramData/47673.aspx National Association of Social Workers (NASW).(2006a). Assuring the sufficiency of a frontline workforce: A national study of licensed social workers--Special report: Social work services for older adults. Retrieved from: http://workforce.socialworkers.org/studies/aging/aging.pdf
    U.S. Department of Health and Human Services (DHHS). (2006). The supply and demand of professional social workers providing long-term care services. Report to Congress. Retrieved from http://aspe.hhs.gov/daltcp/reports/2006/SWsupply.htm

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AUGUST 2012 COMMENTS

DATE:  August 29, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

Although the official comment period has closed for the NAPA draft plan, I'm writing today to urge you to go bolder with the final plan to be released by HHS later this month.

Alzheimer's is a cruel disease. It slowly steals one's intellect, ability to communicate, independence, and dignity, even control over basic bodily functions like eating and caring for personal hygiene. It also places an overwhelming burden on caregivers -- emotionally, physically, and financially.

The commitment to a 2025 deadline in the draft NAPA plan represents a major step forward in the fight against Alzheimer's. I am pleased that the plan recognizes the need for increasing enrollment in clinical trials, compressing the drug development process, accelerating targeted research, and better coordinating activities with other countries.

However, I am one of many concerned Alzheimer's advocates who believe that this first draft fails to present a strategy aggressive enough to achieve the goal of preventing and treating Alzheimer's within 13 years. It lacks specificity in terms of timelines and deadlines, provides no path to providing significantly greater resources, and does not hold a single high-level office or individual accountable for the overall plan.

I hope that HHS will address these issues so that the next version of the plan will be bolder.

With the number of Alzheimer's patients expected to triple in the coming decades, we must embrace a plan that eschews a "business-as-usual" approach and tackles Alzheimer's with the urgency and aggressiveness it requires. If not, we stand to lose millions more lives -- and trillions of dollars -- to this disease.

Thank you.

Georgia KoenigCorona, CA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  August 28, 2012

SUBJECT:  NAPA - Objection to Recommendation

Thank you for your outstanding efforts on NAPA and the May 2012 Alzheimer's Disease Summit.

Below you will find a brief response to a proposal on the use of NAPA funding which has disturbed me sufficiently to immediately respond to both the Alzheimer's Organization and NIH. Specifically, NIA's goal to reduce use of antipsychotics by 15% in the first year and to expand training programs on behavioral intervention.

This is outrageous.

The FDA specifically proscribes the use of antipsychotic drugs other than for their specified purpose and has issued unequivocal warnings of danger up to and including stroke or death to the elderly on misadministration. Medicare specifically proscribes the use of chemical or physical restraints.

The United States Attorney is handling hundreds if not thousands of False Claims Act matters with severe economic penalty against pharmaceutical firms. Local prosecutors are filing criminal complaints against nurses and doctors for the use of anti-psychotics not only in SNF's but, as to children in juvenile detention facilities.

37% of the AD population in Florida is on psychotropic drugs.

First, the act of using a pill or injection in this manner for behavioral control has been characterized by prosecutors as a criminal battery.

Medicare, through Plan D has intimate knowledge of the extent of use by date, duration, dosage and location. If there is extensive use of antipsychotics in a particular facility, the matter should be referred to the United States attorney's office for investigation and appropriate action. Absent referral yet with knowledge, obstruction of justice issues arise.

Individuals don't have the ability to do this. They can only act as to a particular patient in what is essentially a disenfranchised population. Health care surrogates, if any, may or may not be informed of the offensive conduct or attentive to the needs of AD patients who are being abused in this manner.

It is inevitable with an increasingly litigious baby boomer generation that such obstruction of justice charges, conspiracy, RICO and other criminal complaints will be made against the federal government employees, agencies, nursing home operators, nurses and doctors and pharmacies as well as civil actions for damages from injury or wrongful death. It has already started.

Treating this inhuman torture of elderly as an administrative efficiency issue is an abuse as vicious, criminal and sadistic as the act of administering the injection or forcing the pill. I don't know if you have ever sat next to a SNF frail elderly AD with a hip fracture, shaking and crying after administration of an antipsychotic. It will haunt you. One more day is too much.

In one Medicare 5 star facility, an attempt was made in the first week to give a new AD patient an anti seizure drug because the patient was "acting out". The surrogate declined. In this facility, AD were separated from the general population. A friend/aide covering the new patient for an afternoon was a nurse and a former nun from Ireland. She took her to a SNF music recital and was shocked because the rest of the patients were virtually comatose. The surrogate showed up at the facility the next day to find the patient's arms covered with a large hematoma and bruises from wrist to elbow as well as split skin on the forehead. No one had alerted the surrogate to the injury. No staff member would address the injury. The AD patient was pulled out of the facility.

The only way to stop this abuse is to aggressively act. The United States Attorney in Boston took action against J&J and Omnicare under the False Claims Act. It is incumbent upon Medicare and NIH/NIA and AD advocacy organizations to treat this with the same seriousness of purpose and dispense with pharma and nursing home owner/operator handholding. If you as individuals and as a representative of your agency or organization do not have the courage, the talent, the knowledge and the integrity to immediately save these patients from needless continued suffering, don't work in this field.

One doctor advised me that the section of the brain controlling the creative was the last to be destroyed in AD. After months of fruitless research for activities which benefitted AD, I found myself reading the Jerusalem Post on August 5 to find a care center in Israel with a program which made their days enjoyable.

How embarrassing for us that I had to go so far.

Training of Staff

The recommendation to utilize NAPA money on manpower to train nurses and aides in behavioral intervention techniques is a waste of time and an inefficient, inappropriate use of manpower and resources. I don't understand the continuing tolerance of the medical profession feeding itself from subsidies. What is next? Gerontology certification training for attorneys who are not up to speed?

Administrators, nurses and aides are licensed by the state. Prior to licensure, they have to complete training through state approved contractors to insure that they are qualified to perform the function of the profession they have elected to join. If the state, by and through its contractors has not met its responsibility to properly set forth statutory and regulatory qualifications for certification and/or contractors have not met those guidelines in training programs (for which they are compensated), to qualify licensees to meet the needs of the population they service (AD) despite clear demonstrable need, it is incumbent upon the state and its contractors to immediately remedy any training deficiencies.

The professional associations or the Alzheimer's organizations can prepare AD Behavioral Intervention Training materials by disc or online/video cam for sale to state training approved contractors. The state training contractors should incorporate these materials into certification training. If the individual is already licensed, state facility and professional license renewal should be contingent on licensee completion of such continuing professional education.

Tapes are valuable because they can be viewed repeatedly by staff, caretakers and home health care aides at leisure. With all respect to dedicated trainers, sometimes the level of sophistication is not very high and the quality of instruction questionable. Further and often, recommended techniques which fail to address the individual do not work. For example, one newly trained MSW put a group of AD in a room overlooking the garden with peaceful music. One lady was quiet but when they moved her out, she burst out crying. She said they kept her in room next to a desk listening to that "horrible music" because the bill had not been paid and they would not let her go to the bathroom until her family showed up and paid it. She was quiet because she was embarrassed.

Second, agitation and "acting out" are based on inability to communicate physical distress, pain or discomfort, infection, medication side effect or misadministration, fear, frustration, or confusion. Hallucination occurs in the late stages. Behavioral intervention will not be effective if the problem is physical because the underlying cause is not abated. This should be the first step in evaluation.

As experienced nurses will tell you, successful behavioral intervention involves an intimate knowledge of the patient and time consuming one on one attention. Unless and until there is increased staffing in the facility so more than medication administration, dressing, bathing, changing and feeding can be accomplished, no more than lip service will be paid to training efforts. Nurses are furious that, because of budgetary staffing constraints, they may be professionally hurt and their patient's needs are not addressed. Other nurses are so beaten down they are numb and operate on autopilot. Some doctors are clueless. They defer to nurses and pharmain prescription and rarely visit the patient. Yet Medicare pays for their time.

The Florida legislature has declined to increase minimum staffing. Consideration should be given to a mandatory national standard.

Represented decline in the use of antipsychotics is not based on facility compliance with Medicare proscriptions. It is based on the fact that reputable SNF's and AL's refuse to take patients with AD. If a patient develops AD while in the facility and doping is not used, the facility demands 24/7 private care in addition to the facility charges which is paid for by the family as a condition of retention. This is why AD are taken home for private care and lives of caretakers are destroyed.

I have reviewed the financial representations of SNF's and AL's which are on the market throughout the nation. A substantial majority represent a net profit to owners of 35 to 50% of gross income. If a SNF or AL is doping to increase or preserve owner profit, it is time for closure with possible criminal prosecution. Alternatively, federal or state takeover or placement in a form of receivership until compliance is accomplished would be recommended.

I will address specific recommendations including programs and services which actually benefit AD afflicted under separate cover including sources of additional funding for the Alzheimer's Organization.

We had a triple dose of AD in our family. I was responsible for one highly agitated elderly with multiple physical issues for fifteen years, nine 24/7 as well as one late stage dementia. I have used the resources of your site and NIH since it was first accessible on the internet as well as every other medical information site available. I have read deficiency reports for probably 70% of SNF's in Florida, visited facilities, spoken to nurses and other caretakers on a regular and continuous basis and had a front row seat to institutional neglect of elderly AD including a few direct hits.

By way of my qualifications, I am attorney, with a BA University of Notre Dame in government/economics, an MPA NYU, and experience representing the legislative interests of a State Department including Aging, Local Government Services, Housing and Human Services with floor privileges in the Senate and House; in a corporate construction/development operation in a new and heavily regulated industry conforming operations and employment with statutory and regulatory directives; law firm experience including pharma product liability defense; and extensive experience as a mediator.

Thank you for your time.

Patricia A. Murphy, Esq.

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DATE:  August 24, 2012

SUBJECT:  We need a bold plan to stop Alzheimers!

Although the official comment period has closed for the NAPA draft plan, I'm writing today to urge you to go bolder with the final plan to be released by HHS later this month.

Alzheimer's is a cruel disease. It slowly steals one's intellect, ability to communicate, independence, and dignity, even control over basic bodily functions like eating and caring for personal hygiene. It also places an overwhelming burden on caregivers -- emotionally, physically, and financially.

The commitment to a 2025 deadline in the draft NAPA plan represents a major step forward in the fight against Alzheimer's. I am pleased that the plan recognizes the need for increasing enrollment in clinical trials, compressing the drug development process, accelerating targeted research, and better coordinating activities with other countries.

However, I am one of many concerned Alzheimer's advocates who believe that this first draft fails to present a strategy aggressive enough to achieve the goal of preventing and treating Alzheimer's within 13 years. It lacks specificity in terms of timelines and deadlines, provides no path to providing significantly greater resources, and does not hold a single high-level office or individual accountable for the overall plan.

I hope that HHS will address these issues so that the next version of the plan will be bolder.

With the number of Alzheimer's patients expected to triple in the coming decades, we must embrace a plan that eschews a "business-as-usual" approach and tackles Alzheimer's with the urgency and aggressiveness it requires. If not, we stand to lose millions more lives -- and trillions of dollars -- to this disease.

Thank you.

Hannah DickinsonMemphis, TN

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  August 21, 2012

SUBJECT:  Please email a copy of the NAPA webinar PowerPoint?

Would it be possible to receive a copy of the PowerPoint from today's webinar?

Donna WalbergAlzheimer's GrantsMinnesota Board on AgingSt. Paul, MN

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JULY 2012 COMMENTS

DATE:  July 21, 2012

SUBJECT:  Suggestions for dealing with patients with Dementia

I want to thank you for allowing me to participate in this NAPA meeting. In this document, and those attached, I write of issues I feel are important to be shared with the committee. When I have the opportunity to speak during the live meeting, I may follow this format, or I may have additional comments or suggestions.

Attached are a few documents that I hope will benefit many dealing with Alzheimer's disease or other dementia. The first document "Hospitals Dealing with Dementia Patients (1)" is based on my experience in staying in the hospital. I would like to think that what happened to me will apply to most hospitals and they all need to be educated.

When I have brought this to the attention of Doylestown Hospital the people were very receptive and realized that further education was needed. They are now discussing how to best approach/ take advantage of my skills and the use of the Alzheimer's Association to better educate their personnel in this facility. My hope is that this hospital can become a model for other hospitals dealing with dementia patients.

Attached is also "Alzheimer's Initiatives - International Association of Chiefs of Police" document. I worked with the Alzheimer's Initiatives Project Manager for the International Association of Chiefs of Police. Some of these issues are being addressed while others are not. It also seems to be open to the local police chiefs to determine if this is something they will need or benefit from. While the Project Manager feels they should all be implemented, there is no way to get all the Chiefs involved. This is all being done voluntarily. While I know the township next to mine is involved, I cannot say that for the police in my township. Multiple calls went unanswered. My suggestions and many others should become mandatory for not only the safety of the patient and the public, but also for the officer.

Since diagnosed with Alzheimer's, I have had the fear that I will suffer in many ways as I die slowly from this disease. How will I suffer? One way, which I recently realized, is from pain that my doctor might not recognize or treat once I am no longer able to effectively communicate my needs. Recently I found a way that makes it easy for people to do two things: To learn how people can suffer from Advanced Dementia and to then make decisions that are legal and moral. Basically, I do not want to continue any treatment that will ONLY prolong my dying and increase the chance of my suffering.

This tool is a set of illustrated cards. It creates a Natural Dying Living Will. The name is thus "Natural Dying Living Will Cards." Each of the four dozen cards describes a single aspect of Advanced Dementia in plain language. Each card also has a line drawing, to explain the text. What I did when I "sorted the cards" is to make a decision about what I wanted for each item: Treat and Feed, or Natural Dying? A video is being created in which I can explain my choices, which my loved ones can view when the time comes. I am glad I have the opportunity to say now what I will want later. I can have confidence that I will not have to suffer a prolonged dying with emotional or physical pain. I do not think this system covers all of my concerns, but it's the best available that I am aware of today. This should be considered for all others.

One of the manifestations of dementia is wandering. Patients rely upon familiarity and can get lost easily. This can create panic for the patient and their loved ones and may sometimes result in injury or death. Today there are many state-of-the-art location based products and services that offer safety and peace-of-mind to families and loved ones. People need to be educated about these products and directed to the ones that are best fit for their application. The medical field needs to embrace these products as they do drugs. These products can lead to the person safely staying at home longer. Therefore these products should be a must for all patients and should be covered by health plans and government plans. We also need to figure out how to bring down the cost so that everyone can take advantage of them.

As a dementia patient living in the spotlight, I am often contacted by people trying to sell or convince me to use a product they have that will either reverse or cure my disease. We all have this hope factor in us and are very willing to do some very stupid things to see if they work. There needs to be a single unbiased source of all proven technology that people can rely on. There should be information on what is known to help and what has been known to fail. Too many people are being scammed by the quacks and we need to help people understand what really works. Now I say this with caution, because we also need to remain open-minded. Some real solutions may come from non-traditional methods. As long as respectable people have done a true trial, following the stringent protocols established, that can also be backed up by the medical field, then it should be added to the list.

And my last and final point and question. What assurances do families have that what you are doing will get us a means of prevention and treatment by 2020 or 2025? I am already concerned by the lack of funding being appropriated for this cause.

Please do not hesitate to reach out to me should you have any questions. I welcome the opportunity to become more involved in this committee and to be able to give my viewpoints as an Alzheimer's/dementia person. I also volunteer to be utilized by this committee and HSS to be a voice for other AD patients.

Thanks and have a great weekend.

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money" http://www.michaelellenbogen.comhttp://www.michaelellenbogenmovement.com/

ATTACHMENT #1:

At registration, identify a person that can and will be able to be involved in all decision-making, along with the patient.

At registration, identify a person that will be given full access to all records on behalf of the patient.

Patients bring in a list of current medications. If for some reason you must change the drug or dosage for any reason, the issue should be addressed with the patient and caregiver to ensure there are no issues (even if it's as simple as converting to a generic). Sometimes patients cannot take another form of the same drug-ask them.

Example: My doctor switched me to Galantamine rather than Aricept because of side effects. In the hospital, they substituted Aricept. (My wife had Galantamine with her, but of course it is a big deal that you should not take your own meds.)

A special ID bracelet should be placed on this type of individual so the staff is alerted that this patient has some form of dementia. This will help them if the patient is acting confused or wandering or just needs a little extra help or explanation. It may also mean that the patient isn't great at making good decisions. If you need a color, purple is perfect.

Example: I needed a Fleet's enema pre-op. The nurse asked if she should give it to me or if I wanted to use it myself in the bathroom. Of course, I offered to do it myself. I found I had difficulty once I got in the bathroom by myself. Bad decision on my part. The nurse should have not given me the option. (We do not want to appear stupid or show our flaws so we may do something to show we are still capable when we may not be.)

I know they always ask the patient for their full name and birthdate -- that may be hard at times for us. I can become confused on a good day, in the hospital it can be worse because of pain medication or being awakened suddenly. Maybe another way can be figured out. (Before a name tag is placed on a dementia patient it may require 3 or 4 staff individuals to ask the patient for that information and each must identify the same information before the ID is placed. This will insure the wrong tag is not placed on the patient. Use the verbal ask on critical things like surgery and drugs given the first time the nurse may see the patient)

Do not always consider a patient being confused as a part of the dementia, but it could be much worse due to the drugs they are on. When I was on pain killers my wife could not even get a response from me that made much sense, and she knows what's normal for me.

A real concern exists on what type of drugs the patient may receive for Anesthesia. Pain killers will also have a much greater impact on this type of person.

While the ordering food on the menus is simple, it is very overwhelming for me and to keep track of things and what items may even go together or are even needed.

Don't assume we can figure out how to use items in the room, like TV, Phone, call button, and anything else. Please point them out and provide a simple explanation on their use.

Aides should not be the first point of contact. I am not always good at explaining what I need and the aide was not always good at interpreting what I was trying to say. Aides are okay for follow-up or to help with food menus.

When asking a question, give them a minute or two to answer without going on to some other question. You could even ask them to think about it and come back in 5-10 minutes, no longer. We often need a few minutes to gather our thoughts. We might even answer a question right away and then realize a few minutes later that that wasn't what you asked.

Somehow you need to insure the patient response is really correctly given -- they sometimes give an answer just to not appear stupid or show they did not understand. Maybe some visual aid or clues can be given along with the verbal depending on the stage the patient is in.

Try to keep items and things in the room in the same place once they determine the best location for them.

I personally feel these patients should be kept a bit longer than the average person, for observation. This would just be to make certain there are no issues at time of release.

Offer a pen and paper to keep in the room. Tell them to write down questions they want to remember to ask when the nurse comes in the room.

Keep in mind many patients with dementia can no longer spell correctly and may use the wrong context for words.

ATTACHMENT #2:

If someone with Alzheimer's is stopped, for a sobriety test, and they may fail due because they will have trouble following instructions or poor gate. They are also much lower in there response and may even give you a blind stair due to confusion.

A place to store or remove guns from a home when needed - I came up with a simple way that could be accomplished, without too much impact to the police. A gun safety device can be used to secure the guns in the person's home and the key can be given to someone responsible. There were other suggestions made.

Better and improved driving testing methods for Alzheimer's patients, ones that normal people would also not fail. It's very easy to find fault with someone's driving, but is it really related to Alzheimer's. Just think of the foolish things you have done? If do not have Alzheimer we treated one way, but if you do you react so much differently. I know we want to make the roads safe, but that comes at a cost to others lives.

When a call comes into the 911 system, they should have a way for people to register that a person in that house has Alzheimer's. This would prepare them in advance on how to deal with the person and family and eliminate confusion. This of course would be something the resident would need to register. Just think if there is a fire would that person still know what to do. Having that information could and will save lives.

Sometimes Alzheimer's patients get confused or feel threaten and may make accusation that could land someone else in jail. Be prepared to deal with cases like this. They need to be handled very different then the average person.

If an Alzheimer's patient becomes defensive, do to some argument, they can sometimes become very aggressive and even become threaten. That is the wrong time to try to remove them from a home. They need to be calmed down first, before moving on, otherwise it can become a disaster for that person, since they will not understand what is going on and may escalate even more.

Be prepared on how to deal with people who may seek help when they are lost driving. All because we get lost driving, does not mean they cannot drive. These two issues are very confused by many.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  July 4, 2012

SUBJECT:  nutrition focus for ALZ

Taking care of a loved one during the progressive stages of ALZ includes specialized meal items and feeding techniques that we practice in long term care. Would it be possible to include some information and allow funding for increased needs for nutrition education to minimize malnutrition risks for ALZ patients or is this already considered?

Best regards,

Janet Shufelt, MS RD LDCMDA Nominating Chair/Past PresidentClinical Dietitian LMCEC

[Return to Public Comment Index or This Year's Table of Contents]

JUNE 2012 COMMENTS

DATE:  June 27, 2012

SUBJECT:  We need a gold plan to stop Alzheimer's

Although the official comment period has closed for the NAPA draft plan, I'm writing today to urge you to go bolder with the final plan to be released by HHS later this month.

Alzheimer's is a cruel disease. It slowly steals one's intellect, ability to communicate, independence, and dignity, even control over basic bodily functions like eating and caring for personal hygiene. It also places an overwhelming burden on caregivers -- emotionally, physically, and financially.

The commitment to a 2025 deadline in the draft NAPA plan represents a major step forward in the fight against Alzheimer's. I am pleased that the plan recognizes the need for increasing enrollment in clinical trials, compressing the drug development process, accelerating targeted research, and better coordinating activities with other countries.

However, I am one of many concerned Alzheimer's advocates who believe that this first draft fails to present a strategy aggressive enough to achieve the goal of preventing and treating Alzheimer's within 13 years. It lacks specificity in terms of timelines and deadlines, provides no path to providing significantly greater resources, and does not hold a single high-level office or individual accountable for the overall plan.

I hope that HHS will address these issues so that the next version of the plan will be bolder.

With the number of Alzheimer's patients expected to triple in the coming decades, we must embrace a plan that eschews a "business-as-usual" approach and tackles Alzheimer's with the urgency and aggressiveness it requires. If not, we stand to lose millions more lives -- and trillions of dollars -- to this disease.

Thank you.

Sister Clare Joseph FarabaughDallas, PA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  June 18, 2012

SUBJECT:  Down Syndrome Comment

Attached, please find a letter to Secretary Sebelius from the Congressional Down Syndrome Caucus co-chairs. A hard copied was mailed today.

Thank you,

Karen L. Summar, MD, MSJoseph P. Kennedy Foundation Public Policy FellowOffice of Congresswoman Cathy McMorris RodgersWashington, DC

ATTACHMENT: 

As co-chairs of the Bipartisan Congressional Down Syndrome Caucus, we have reviewed the National Plan to Address Alzheimer's Disease. We commend you on this historic effort to fight Alzheimer's disease and related dementias and for the inclusion of Down syndrome in this National Plan. We are pleased the Plan establishes a taskforce to address the unique care challenges faced by people with younger-onset Alzheimer's disease. Additionally, we are pleased that the Plan includes steps to improve access to long-term services and supports for younger people, including those with Down syndrome.

Alzheimer's disease attacks adults with Down syndrome at a younger age and with increased frequency when compared to the general population. The pathological findings of Alzheimer's disease have been described in the brains of people with Down syndrome since the 1800s There are genetic factors at play that, in part, explain these pathologic and clinical observations. NIH is funding Down syndrome research using natural history studies and imaging techniques to identify early markers of cognitive decline. These studies will undoubtedly help people with Down syndrome, but they will also have a broader application to those individuals in the general population who are at risk for developing Alzheimer's disease. By recognizing the specific link between Down syndrome and Alzheimer's disease, the National Plan will leverage all of the most current scientific data available. More importantly, millions of American's who are at risk for Alzheimer's disease will benefit from the research that is already underway for those with Down syndrome. This is truly a win-win for the entire community.

Again, we thank you for your inclusion of Down syndrome in the National Plan, but are asking you to go a step farther. We respectfully request that a representative from the Down syndrome research community be added to the Advisory Council on Alzheimer's Research, Care, and Services.

Sincerely,

Rep. Cathy McMorris Rodgers
Rep. Chris Van Hollen
Delegate Eleanor Holmes Norton
Rep. Pete Sessions
Congress of the United States

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  June 13, 2012

SUBJECT:  Very important to me

Thanks again for all of your help in the past. This is the most important work, I have ever completed. Please help me make this link below go viral. Please add it to twitter, Facebook, your web site and place it on other websites in comments sections. If this can become viral, this will definitely have a huge impact on Alzheimer's perception.

http://youtu.be/oXKO1Qr5qf0

Thanks for your support,

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money"http://www.michaelellenbogen.comhttp://www.michaelellenbogenmovement.com/

P.S. If you should receive this message more than once I do apologies. My skills are not as good as they use to be.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  June 9, 2012

SUBJECT:  Advisory Council on Alzheimer's Research, Care, and Services

I am a retired public school principal (age 64) and a caregiver for my wife (age 65), who has Alzheimer's Disease (AD). I have written two articles that have recently been published in American Journal of Alzheimer's Disease & Other Dementias. "Alzheimer's and Baby Boomers" was published in their September, 2010 issue, and "Ten Things You Should Do When the Diagnosis is Alzheimer's" appeared in their March, 2011 issue. I also had a third article published, "Forget the Mental Status Test and Learn to Listen," as a lengthy Letter to the Editor in the May issue of Journal of Family Practice. These three articles were written to help doctors improve their process of diagnosis and treatment of AD patients ... and their caregivers ... based upon my experience to date. I am now writing a fourth article to educate the public on the urgent need to increase federal funding though NIH for research. I have appended a draft of that piece to the end of this email.

I respectfully request that your Advisory Council address the issues raised in my three articles, as well as in the attached draft. Aside from the need to increase AD research funding,

Thank you for your time and consideration.

Alzheimer's ... Our New Cancer?Allan Vann

Cancer is the second leading cause of death in this country. Earlier this year, the Centers for Disease Control reported that between 1971-2007, the number of cancer survivors in the United States grew tremendously due to "earlier detection, improved diagnostic methods, and more effective treatment," among other reasons. Furthermore, according to CDC, "about 1.1 million of the (cancer) survivors had lived with the diagnosis for more than 25 years."

Alzheimer's Disease (AD) is the sixth leading and fastest growing cause of death in this country, and the only one of the top ten causes with no means of prevention or cure. Unlike with cancer, CDC cannot report any AD survivors. None. Most people only live for 8-10 years after an AD diagnosis, and between 5-10% of those with Alzheimer's are still in their thirties, forties, and fifties when diagnosed.

Our country faces a huge AD crisis in the years ahead. More than 5 million Americans have already been diagnosed with AD, and with so many baby boomers now turning 65 each day this number is expected to triple in the next 30-40 years.

One politician seeking greater funding for AD research is Maine Senator Susan Collins. She noted that, "We spend one penny on research for every dollar the federal government spends on care for patients with Alzheimer's. That just doesn't make any sense." Care for Alzheimer's patients already costs this country nearly $200 billion a year and, according to Senator Collins, "If nothing is done to slow or stop the disease, Alzheimer's will cost the United States $20 trillion over the next 40 years."

This year, our National Institutes of Health (NIH) will allocate more than $6 billion for cancer research ... but less than $500 million for AD research ... just as was true last year. This doesn't make any sense. Despite the need to reduce overall federal spending, we must increase NIH funding for AD research. Aside from the human cost to AD patients, caregivers, and their families, current research spending is penny wise and dollar foolish. As Senator Collins suggested, without major breakthroughs in treating AD, let alone finding a cure, future long term costs to our Medicare system will be astronomical.

My wife was diagnosed with AD at age 63. No treatment or cure will arrive in time for her. But if our country begins to devote funding for AD research as we have for cancer, then perhaps one day some people will be able to say that they are AD survivors. And perhaps our health care system will be that much further away from bankruptcy.

Allan Vann, Ed.D.Commack, NY

[Return to Public Comment Index or This Year's Table of Contents]

MAY 2012 COMMENTS

DATE:  May 15, 2012

SUBJECT:  Participate

Where do I visit online to find out information about participating in this new study?

Thanks.David McCracken

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  May 15, 2012

SUBJECT:  National Plan to Address Alzheimer's Disease Released

I had an opportunity to see the new site. While it may be a good start, you have sugar coated to many things. People need to know it all and the truth. Especially that people die from this disease.

Michael Ellenbogen

==========

From: NAPA@hhs.govSent: Tuesday, May 15, 2012 2:24 PM Subject: National Plan to Address Alzheimer's Disease Released

Obama Administration Presents National Plan to Fight Alzheimer's Disease

Health and Human Services Secretary Kathleen Sebelius today released an ambitious national plan to fight Alzheimer's disease. The plan was called for in the National Alzheimer's Project Act (NAPA) [national-alzheimers-project-act], which President Obama signed into law in January 2011. The National Plan to Address Alzheimer's Disease [national-plan-address-alzheimer’s-disease] sets forth five goals, including the development of effective prevention and treatment approaches for Alzheimer's disease and related dementias by 2025.

In February 2012, the administration announced that it would take immediate action to implement parts of the plan, including making additional funding available in fiscal year 2012 to support research, provider education and public awareness. Today, the Secretary announced additional specific actions, including the funding of two major clinical trials, jumpstarted by the National Institutes of Health's (NIH) infusion of additional FY 2012 funds directed at Alzheimer's disease; the development of new high-quality, up-to-date training and information for our nation's clinicians; and a new public education campaign and website to help families and caregivers find the services and support they need.

To help accelerate this urgent work, the President's proposed FY 2013 budget provides a $100 million increase for efforts to combat Alzheimer's disease. These funds will support additional research ($80 million), improve public awareness of the disease ($4.2 million), support provider education programs ($4.0 million), invest in caregiver support ($10.5 million), and improve data collection ($1.3 million).

"These actions are the cornerstones of an historic effort to fight Alzheimer's disease," Secretary Sebelius said. "This is a national plan--not a federal one, because reducing the burden of Alzheimer's will require the active engagement of both the public and private sectors."

The plan, presented today at the Alzheimer's Research Summit 2012: Path to Treatment and Prevention, was developed with input from experts in aging and Alzheimer's disease issues and calls for a comprehensive, collaborative approach across federal, state, private and non-profit organizations. More than 3,600 people or organizations submitted comments on the draft plan.

As many as 5.1 million Americans have Alzheimer's disease and that number is likely to double in the coming years. At the same time, millions of American families struggle with the physical, emotional and financial costs of caring for a loved one with Alzheimer's disease.

The initiatives announced today include:

  • Research -- The funding of new research projects by the NIH will focus on key areas in which emerging technologies and new approaches in clinical testing now allow for a more comprehensive assessment of the disease. This research holds considerable promise for developing new and targeted approaches to prevention and treatment. Specifically, two major clinical trials are being funded. One is a $7.9 million effort to test an insulin nasal spray for treating Alzheimer's disease. A second study, toward which NIH is contributing $16 million, is the first prevention trial in people at the highest risk for the disease.
  • Tools for Clinicians -- The Health Resources and Services Administration has awarded $2 million in funding through its geriatric education centers to provide high-quality training for doctors, nurses, and other health care providers on recognizing the signs and symptoms of Alzheimer's disease and how to manage the disease.
  • Easier access to information to support caregivers -- HHS' new website, www.alzheimers.gov, offers resources and support to those facing Alzheimer's disease and their friends and family. The site is a gateway to reliable, comprehensive information from federal, state, and private organizations on a range of topics. Visitors to the site will find plain language information and tools to identify local resources that can help with the challenges of daily living, emotional needs, and financial issues related to dementia. Video interviews with real family caregivers explain why information is key to successful caregiving, in their own words.
  • Awareness campaign -- The first new television advertisement encouraging caregivers to seek information at the new website was debuted. This media campaign will be launched this summer, reaching family members and patients in need of information on Alzheimer's disease.

Today's announcement demonstrates the Obama administration's continued commitment to taking action in the fight against Alzheimer's disease.

In 2013, the National Family Caregiver Support Program will continue to provide essential services to family caregivers, including those helping loved ones with Alzheimer's disease. This program will enable family caregivers to receive essential respite services, providing them a short break from caregiving duties, along with other essential services, such as counseling, education and support groups.

For more information on the national plan to address Alzheimer's disease, visit: www.alzheimers.gov.

##

National Alzheimer's Project Act national-alzheimers-project-act National Plan to Address Alzheimer's Disease national-plan-address-alzheimer’s-disease Alzheimers.gov http://www.alzheimers.gov

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  May 15, 2012

SUBJECT:  Fwd: Why we need to make educated guesses to solve Alzhiemer's disease

I just realized I never sent you the comments I made at the April 17 meeting. Attached please find both Word and PDF files of my comments, which I am providing for the public record. Thank you,

Caroline Rodgers

ATTACHMENT:

Of Alzheimer's, the scientific method & educated guesses

My name is Caroline Rodgers. Some of you may recall that in January, I presented my hypothesis that Alzheimer's disease is caused by dental X-rays shortening the lifespan of the brain cells that keep sustain neurons, fatally stranding them (1). The article it was based on was reviewed by scientists specializing in Alzheimer's, neurology or radiology during manuscript development and in the course of peer review before it was published in Medical Hypothesis last July (2).

But that's not what I am here to talk about.

I am here to talk about the scientific method versus expediting answers. Thomas Edison was a great one for applying scientific method. He exemplified how persistence can conquer multiple failures when he had his lab test 10,000 different filament substances before finding tungsten. That was a great feat, but he was only looking for a way to light up the world that was already aglow with candles.

Alzheimer's is different. Darkness is descending on the minds of the elderly and the not-so-elderly with savage rapidity. Every day we fail to discover what is causing Alzheimer's and how to treat it, countless more individuals are doomed to losing their minds and ultimately, their lives in a manner that does not go gently into the night. We don't have the time to test 10,000 possibilities -- we need ask new questions and to make educated guesses that will vault us into new territory.

Clinical trials are the "gold standard" of evidence-based medicine. But when a treatment does not pass a clinical trial, it is not gold, it is lead. Recently one scientist involved with clinical trials of Alzheimer's drugs said that some 100 treatments were in the works, most of which targeted brain plaques. Since more than one clinical trial of a plaques-clearing treatment has been halted for doing more harm than good, it is time to consider that clearing plaques is not the answer and no alchemy can turn it into gold.

Meanwhile, we can't afford the time and money to be as systematic as Edison -- we need educated guesses that, like leaps of faith, close the gap quickly. The answer is probably a simple one; the very speed with which Alzheimer's has become a killer argues against a complex etiology, since the more factors required for an outcome, the more difficult it is to meet all of the conditions necessary to cause it. Plus, simple answers are easily overlooked, which is why it took nearly 300 years for scientists to discover that rickets was caused by a lack of sunshine.

Are dental X-rays causing Alzheimer's? I can't answer that question because my hypothesis has yet to be tested. But I'm told it would take only about $20,000 to launch a pilot study that could bring us closer to the truth. We need to investigate this and other out-of-the-box ideas. While the Research Subcommittee's draft recommendations call for timelines, strict metrics and cooperation among what it terms "industry players," we need to go beyond these business models and find ways to attract and fund fresh avenues of Alzheimer's research. While scientific method is important, if it is not used to explore creative educated guesses it may be a long time before we strike gold.

Thank you.

  1. http://aspe.hhs.gov/daltcp/napa/Comments/2012PubCom.shtml#CRodgers1
  2. http://www.medical-hypotheses.com/article/S0306-9877(11)00118-6/abstract

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  May 2, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

Although the official comment period has closed for the NAPA draft plan, I'm writing today to urge you to go bolder with the final plan to be released by HHS later this month.

Alzheimer's is a cruel disease. It slowly steals one's intellect, ability to communicate, independence, and dignity, even control over basic bodily functions like eating and caring for personal hygiene. It also places an overwhelming burden on caregivers -- emotionally, physically, and financially.

The commitment to a 2025 deadline in the draft NAPA plan represents a major step forward in the fight against Alzheimer's. I am pleased that the plan recognizes the need for increasing enrollment in clinical trials, compressing the drug development process, accelerating targeted research, and better coordinating activities with other countries.

However, I am one of many concerned Alzheimer's advocates who believe that this first draft fails to present a strategy aggressive enough to achieve the goal of preventing and treating Alzheimer's within 13 years. It lacks specificity in terms of timelines and deadlines, provides no path to providing significantly greater resources, and does not hold a single high-level office or individual accountable for the overall plan.

I hope that HHS will address these issues so that the next version of the plan will be bolder.

With the number of Alzheimer's patients expected to triple in the coming decades, we must embrace a plan that eschews a "business-as-usual" approach and tackles Alzheimer's with the urgency and aggressiveness it requires. If not, we stand to lose millions more lives -- and trillions of dollars -- to this disease.

Thank you.

Available as separate links:
List of the 14 People Who Sent this Form Letter in May 2012/pdf-document/we-need-bold-plan-stop-alzheimers

[Return to Public Comment Index or This Year's Table of Contents]

APRIL 2012 COMMENTS

DATE:  April 30, 2012

SUBJECT:  National AlzheimersPlan Recommendations

I AM A DAUTHER,AN AMERICAN , A VOTER AND A CAREPARTNER FOR A PARENT WITH ALZHEIMERS DISEASE AND THESE ARE MY RECOMMENDATIONS FOR THE NATIONAL ALZHEIMERS PLAN:

Goal One is of vital important-To accomplish this goal, it is imperative that a subgroup is formed to accelerate and streamline efforts to isolate and identify potentially viable drugs that can effectively cross the Blood Brain Barrier and stop and preferably regress the Alzheimersdisease process. This group should consist of a representative from all of the top federal and non-federal agencies that are involved in bringing a drug through the development process into human testing and beyond to becoming FDA approved. This subgroup should consists primarily of a representative from HHS,NIH,NIA,WHO,FDA, Doctors and Researchers , as well as Biotech and Pharmaceutical companies. Similar to the Therapeutics For Rare And Neglected Diseases (TRND) Program-this subgroup should stimulate drug development and research by providing an opportunity to partner with one another in a collaborative environment with the goal of moving promising drugs into human trials in a timely, efficient and highly effective manner. This subgroup should use an application and evaluation process to select collaborators. Selected investigators should provide each separate drug candidates starting points and ongoing biological disease expertise throughout the total project. Each drug composition should be studied individually and separately so that the best possible ones can be accurately identified and focused upon. Therefore each potentially valid treatment and or cure for the alzheimersdisease process is regarded as a separate project or entity ,within the main project; the main project's goal being to create a new and better medicine for the alzheimers disease process and or a cure.

The Alzheimers Disease Summit in May 2012 should be looked upon as a breeding group for potentially valid drug candidates. All and any information gathered and disseminated at the summit should be thoroughly analyzed for the absolute best possible viable candidates to be studied by the subgroup, in a supreme effort to accomplish goal one. A representative from each agency involved in the subgroup should be in attendance at the summit so that they can absorb information and use it accordingly.

To increase public awareness of the disease and its various components a public service announcement should be broadcast across the country on every public tv station. This announcement should show a person with the disease, throughout the various progressive stages and explain to America that alzheimersis much more than a loss of memory but instead a progressive degenerative brain disease that is fatal and desperate for public support and a new and better medicine and or a cure.

Thank you

Carla DanesiGloria's Daughter "Remember Gloria,Gloria Lives"

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 25, 2012

SUBJECT:  Alzheimer's Comment

My name is James Alfano. I am a physical therapy student at Thomas Jefferson University in Philadelphia, PA. I was recently doing some research on Alzheimer's legislation for my "Geriatrics" course when I came across the National Alzheimer's Project Act. After reading more about NAPA online, I was pleased to see that the Advisory Council welcomes public comments. While I understand that the April 17th Advisory Council meeting just passed, if it is at all possible, I would like to include the following comment for consideration at the next meeting.

Having a grandmother with Alzheimer's disease, I understand how emotionally difficult, physically taxing and financially burdensome this disease can be for a family. As my grandfather has become older and less able to take care of her, my mother and aunts have stepped up and given up much of their free time to care for her. However, with all of them working, a home health aide is needed.

Over the past couple of years, my grandmother has had numerous aides because the previous one decided that she could no longer make the commute or take care of my grandmother, among other reasons. While I understand there are legitimate reasons why an aide can no longer work with a particular patient, my family and I often felt that the aides were dictating terms to the home health agency in that they chose when and where they wanted to work and for how long. Their unreliability presented as a burden for my family and was traumatic for my grandmother who has difficulty adjusting to the new people due to her cognitive limitations.

I believe a system that makes the aides more accountable to the individuals they are assigned to care for would be beneficial, possibly through more education or training. I also believe the directors of home health agencies should be required to have a medical background so that they would be better able to understand a patient's needs and assign appropriate aides to the individuals requiring care, especially to those with dementia.

Thank you for your time and consideration of this matter.

James AlfanoPhiladelphia, PA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 23, 2012

SUBJECT:  National Council of Certified Dementia Practitioners Comments regarding Long-Term Services and Supports Subcommittee Recommendations Document April 2012 Handouts

In reading number 6 we wanted to add our comments. We have four recommendations:

Our first recommendation is that the committee should be aware of which states are requiring dementia education and how many hours are required. The regulations are different in every state and for each industry, such as Adult Day Care, Hospice, Home Care, Nursing Homes, Assisted Living, Hospitals, Rehab Centers, Psychiatric Facilities and Locked Dementia Units. Some states require more dementia education such as 20 hours and other states and depending on which industry require less dementia education while others do not have a specific number of hours. Some states may require more than 10 hours of dementia education. So at minimum before your recommendation is passed, you should be aware of what each state is requiring for dementia education and for each industry. At minimum the national standard should be more than 10 hours. We are recommending at minimum 12 hours of Live dementia education for all front line staff and health care professionals.

We recommend live training by a certified Alzheimer's and dementia trainer. In some states the education is permitted per the state regulation via Weimar and video training. We stand against this way of initial Alzheimer's and dementia training because you can not be sure that the person attending the Webinar or video training is in fact that person. Nor can you insure when the material is presented by Webinar or video training that the employee understood the material. "Live Training" is critical in preventing abuse and neglect of our most vulnerable elders by the front line staff and health care professional.

In addition, we recommend ongoing training through out the year to keep the staff up to date on regulatory changes and new advances in all aspects of care. Each year for NCCDP Alzheimer's and dementia Staff Education Week February 14 to 21 and we provide free staff in-services for educators to download from our site which includes the power point, hand outs, pre tests and post tests. This is a free services and is available from November till May. We add many new topics every year. Your recommendations should let the public know of this free service.

Secondly, the wording you have for the education piece is "reliable source". We feel it should be spelled out to specifically state, universities, associations,nationally recognized companies and nationally recognized organizations. such as the National Council of Certified Dementia Practitioner's, National Alzheimer's Association, National Alzheimer's Foundation, Office on Aging, etc. The public should be aware by your office of all of the organizations and companies providing dementia education and not just a select few who are serving on your committee. The institution than can make a choice as to which organization to use for staff training.

Our third recommendation should be that the words "Paraprofessional Caregiver" come out and replace with all Health Care Professionals and Front line staff including Nursing Assistants, Home Health Aides, Personal Care Assistants, Activity and TR professionals, Nurses, Social Workers, Dietary Workers, PT, OT, Speech, Housekeeping, Bus Drivers, Administrators, Assistant Administrators, Pharmacists, Physicians and all other staff who interact with the patient. We feel this needs to be very detailed and specific and not in any way target one specific profession as all professions who interact with the geriatric patient be included in the Alzheimer's and dementia training.

Our fourth recommendation is that Alzheimer's and dementia education be mandated in all colleges, universities, trade schools that provide a medical profession trade or certification or license for any health care related profession regardless if they are entering the geriatric field.

Sandra Stimson, CALA ADC CDP CDCMNational Council of Certified Dementia Practitionershttp://www.nccdp.org

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 20, 2012

SUBJECT:  RE: Why Physician-Assisted Dying is NOT for dementia patients; (response to Mr. Ellenbogen by Stanley A. Terman, PhD, MD, who wrote a NAPA public comment on March 26 2012)

While I agree with some of your statements and there is a flaw. The flaw is not thought my ideas, but the system we created. Many of us think they are god and have the right to make decision for everyone else and they do not look past the religion aspect of things. The perfect world would be based on having doctors put me out based on taken a certain score on the 30 question MMI test (or whatever you call it) they always give you. I am not sure what the number would be, but probably about 15 - 20. That of course would require much more involvement from my doctors so I could truly understand what that all means. It should also be based at taking that test 3 separate times at different times of the day, with at least a week in between. That would all be based by my original request when I was still capable of making a sound decision. I would be happy to discuss it with anyone interested in speaking about it.

Michael Ellenbogen

==========

From: Stanley TermanSent: Friday, April 20, 2012 1:30 PMSubject: Re: Why Physician-Assisted Dying is NOT for dementia patients; (response to Mr. Ellenbogen by Stanley A. Terman, PhD, MD, who wrote a NAPA public comment on March 26 2012)

Why physician-assisted suicide/dying cannot help patients who have dementia

Mr. Ellenbogen brings up an important point, one that concerns many people who worry about dementia: Briefly: Is there a way for them to exit in a dignified way that is also timely?

Mr. Ellenbogen expressed this fear well, and I feel compassion for him. His stated problem begs for an effective solution. Yet the one he proposed is seriously flawed from several points of view: the clinical, practical, ethical, moral, and psychological, as well as legal.

The points of agreement and the one point of disagreement that I have with Michael Ellenbogen is within his key paragraph that I copied below and then respond to, point-by-point, by adding my specific comments:

Mr. Ellenbogen wrote: "You need to make plans when you are still able to think clearly. You must figure out a method so you know what to do when the time comes. The scary part for me is knowingwhen the right time may be. You do not want to go earlier then you have to, but you do not want to wait until the point where you may not be able to decide to do it, or remember how to do it. That is why I am a true believer in assisted suicide. It would be nice to let someone know my wishes far in advance, and when we get to that point they would instruct me on what I had to do. This way, my family and I could get the most out of my life without question."

First a general comment: Mr. Ellenbogen expresses what I have been calling the "Dementia Fear," when he writes: "You do not want to wait until the point where you may not be able to decide to do it, or remember how to do it," since by the word, "IT," he really means suicide. More typical is this blunter statement: "If I don't kill myself now (when I can), I won't be able to kill myself later (when I want to)." The consequence of acting on this fear is "premature dying," which violates the principle of the sanctity/preciousness of life. This is the problem for which Mr. Ellenbogen is searching for a solution.

Now, point-by-point:

Yes, I agree: "You need to make plans while you still have the mental capacity to make end of life treatment decision." Let me add: One way to do this is to create a clear and specific Living Will and to appoint a proxy/agent whom you trust to make sure that others will honor the wishes you previously expressed in your Living Will. The document designates your proxy/agent must give the appointed individuals sufficient power to facilitate your last wishes.

Yes, I agree: "You need to figure out a method so you know what to do." To respond: My personal choice, and what I advise my patients to consider is to forgo the continuation of another person's hand to assist oral feeding and drinking. This is what I have been calling "Natural Dying." Important: food and fluid are always placed near enough to reach so that if you regained the ability to eat independently, you could. Forgoing treatment that has become extraordinary or disproportionate is both legal and moral.

Yes, I agree: "The scary part is knowing when the right time may be." Appreciating that you will lose the ability to decide on that time later means you must make this decision while you still can. The goal of TIMELY DYING is possible if you can trust your proxy/agent and your future physician to engage in the process of "shared decision-making." Then, someday, they will compare your future condition with the decisions you expressed in your clear and specific Living Will to decide if it is time for "Natural Dying."

Important: Assisted suicide is not legal for patients who have dementia, even in Oregon, Washington, or Switzerland. While legal in theory, it is very rarely practiced in Holland because physicians do not feel comfortable killing a patient who cannot contemporaneously express the wish to die. Dutch physicians also do not feel comfortable killing a patient whose major issue is their anticipatory fear of greater suffering and burdens in the future; they insist that patients have unbearable suffering which cannot be relieved in any way other than by dying--which is NOT the case for patients in the early or middle stages of dementia. Even for patients who had such terminal diseases as cancer or neurological diseases (which comprise the majority of patients who used Oregon's "Death With Dignity Act"), only 600 people died this way since 1997. Compare this number to the one to two million people who currently are suffering in the advanced stage of dementia--a number that will triple by mid-century. Thus, physician-assisted dying cannot be a practical, legal, or ethical answer for a prolonged dying with much suffering for patients who reach the stage of advanced dementia.

Yes, I agree: "It would be nice to let someone know my wishes far in advance..." and "This way, my family and I could get the most out of my life without question." This laudable goal can be accomplished by effective Advance Care Planning.

But now, a resounding NO, I do NOT agree: "When we get to that point they would instruct me on what I had to do" (e.g., how to commit suicide). Your family members would risk being indicted for a serious crime with severe penalties. They are also likely to suffer from greater moral angst and grief, if they actively helped you die when they were not sure about--as you put it "when the right time... when [I] get to that point." The best way to reduce the emotional burdens on families is to create your gift of a clear, specific Living Will and to make it clear that you are responsible for the ultimate existential decision, not them.

Let me end with a personal note to Michael Ellenbogen: I am sorry you have the diagnosis of dementia. I am glad that you are still functioning at such a high level. Unfortunately, you cannot be sure, just because each dementia patient is different, just how long you will retain your ability to exercise good judgment about end-of-life medical decisions. Now, you do. Someday... unless you die of another disease first, the irreversible, progressive disease of dementia will likely deprive you of that good judgment. (Perhaps an exception is a very well controlled vascular dementia that remains stable.) This is the reason why it is so important that you make your decisions, memorialize them, and appoint surrogates to facilitate them NOW. It would be an enormous shame and waste of your good life, if you were to commit suicide prematurely, just because you still possessed the mental capacity to make medical decisions. I hope you live as long and as well as possible.

Conflict of interest statement: Stanley A. Terman, PhD, MD, has written three books on this subject and created a deck of illustrated cards that people, even those in early dementia, can use to generate a clear and specific Living Will if they want to attain the goal of a timely and peaceful dying. (The books are "The BEST WAY to Say Goodbye: A Legal Peaceful Choice at the End of Life," "Peaceful Transitions: Stories of Success and Compassion," and "Peaceful Transitions: Plan Now, Die Later--Ironclad Strategy"; the cards are "My Way Cards for Natural Dying" or "Natural Dying Living Will Cards." Dr. Terman is the founder and Medical Director of Caring Advocates, a non-profit organization.)

Stanley A. Terman, PhD, MDBoard Certified in Psychiatry Medical Director and CEO of Caring AdvocatesCarlsbad, CAhttp://www.CaringAdvocates.orghttp://www.MyWayCards.orghttp://www.MyLastWishes.org

==========

From: Michael EllenbogenSent: Fri, Apr 20, 2012 at 7:38 AM Subject: Response to letter from Stanley A. Terman, PhD, MD, dated, March 26 2012 in the NAPA public comments about Michael Ellenbogen

I am writing to you out of frustration to the letter of Stanley A. Terman, PhD, MD, dated, March 26 2012. While I do not know what his credentials are, I can assure you 100% without doubt that he does not have any understanding of what Alzheimer's patients are capable of doing or not doing. While I have heard from all the smart doctors make the statement that if you know one Alzheimer's patient, you only know one as for their symptoms go.

While I may have trouble writing, speaking, do financing and many of the other things I so dearly miss, I am very capable of making very good judgments. In fact I still help many people who do not have dementia to help them with decisions they are unable to make.

Some people like to be in the public spot light for the wrong reasons, which is the case for this individual. If you are going to make statements, you should understand all sides, not just a one side point of view, maybe perhaps poor judgment on his part.

My wife feels that she would have no problem taking care of me all the way to the end. Since she happens to be an RN she feels she could take off for a year to become my private nurse, if and when I became bad. But I have many fears of reaching that point in my life. First of all, I do not want to be remembered as the person who could no longer talk or take care of himself. I want to leave this world with dignity and not make others feel better about themselvesbecause they kept me around to the end. I do not want to frustrate and burden their lives any more than I have. While we have had a great life, those are the thoughts I want to leave my wife with. I also hope that she finds someone new in her life so she can move on. My daughter lives in another state and I do not want her to feel obligated to move back, close to home, just to help her mother. I do not think my wife realizes what a major undertaking this is. While she may be good at what she does, she cannot handle this type of pressure.

Then of course, I do not want to suffer and be tortured for the rest of my life. There are many times, on a daily basis, when I am not always clear on what I need to do to make myself more comfortable or not suffer from pain. In the middle of the night, while sleeping, I become uncomfortable because I'm hot, so I flip the covers off my feet and feel so much better. A few hours go by, and now my feet are cold, so I replace the blanket. Now imagine that you are hot, and there is no way to remove that blanket. I would go crazy because I could not do that and would suffer. That is exactly what would happen if I could no longer do or think for myself.

My wife seems to think that those types of issues would not bother me. Who really knows? However, I do not want to be the one to find out and suffer. Sure, she can want to think it will not happen, for her peace of mind, but what about me?

Let me give you another example. I have major allergy problems and I constantly have a postnasal drip. Its major impact to me is at night and I frequently wake up gagging and coughing in an effort to clear my nose and throat. Sometimes I can waste 45 minutes before I finally resolve the issue. I actually suffer today and feel tortured at times. Can you imagine if that happens to me and I cannot let someone know what's bothering me and cannot do anything for myself. That frightens me to no end. My allergist has run out of options with me. This problem has really become much worse this year.

One last example. I am particular about how my pillow feels when I go to sleep. I like it to be very fluffed up. Usually once during the night I tend to flip it so that I get the fluffed end again, and it feels so much better when I do that.

People may tell you to wait until it gets worse, but they are wrong. You need to make plans when you are still able to think clearly. You must figure out a method so you know what to do when the time comes. The scary part for me is knowing when the right time may be. You do not want to go earlier then you have to, but you do not want to wait until the point where you may not be able to decide to do it, or remember how to do it. That is why I am a true believer in assisted suicide. It would be nice to let someone know my wishes far in advance, and when we get to that point they would instruct me on what I had to do. This way, my family and I could get the most out of my life without question.

There are many other reasons I can go into, but I need to go to a funeral for a family member who final passed away after years of torture. He finally passed from Parkinson Disease the other day. He was zombie and scared and had no life. He had living will that was over ridden because some family member was going to have a wedding and they decide to put feeding tube in when he would have probably died in another day or two. Now that is poor judgment from people like you.

Please see Stanley A. Terman letter below.

Regards,

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money" http://www.michaelellenbogen.comhttp://www.michaelellenbogenmovement.com/

==========

DATE: March 26, 2012SUBJECT: Submitting my COMMENT based on my telephonic statement of March 14, 2012 to the Advisory Council

This letter is very similar to my oral testimony (a few corrected typos and better words)--except for my adding a new paragraph at the beginning--to respond more fully to a public comment that preceded mine:

A person (Michael Ellenbogen?) who currently suffers from mild Alzheimer's dementia concluded his comments by recommending the Advisory Council on Alzheimer's Research, Care, and Services consider the "right-to-die" option. He thus implied that Physician-Assisted Dying could be an option for patients who suffer from dementia. Because of time limitations, I could only disagree briefly by saying that Physician-Assisted Dying will neither help nor is needed. I now explain more: (1) Why would Physician-Assisted Dying NOT help? Where Physician-Assisted Dying is legal, the law requires patients be of "sound mind" when they ask their physician to write a prescription for a lethal dose of medication. Yet dementia patients lose the mental capacity to make medical decisions early in the course of this progressive disease. Thus for dementia patients, Physician-Assisted Dying would compound their tragedy with premature dying. This is because dementia patients can have much good life after they lose capacity--and they can expect more, with further research--so I and many others consider premature dying an act that violates the principle that life is precious. (2) Why is Physician-Assisted Dying NOT needed? Because Living Will forms and the discussions they provoke can be both moral and effective. Combined with other clinical and strategic forms, diligent Advance Care Planning can give people peace of mind, whether they are still well or in the early stage of dementia. They need not worry about being forced to linger for months to years by enduring the huge burdens and suffering that characterize Advanced Dementia. Instead, they can feel confident that others will honor their Known Wishes after they lose the ability to speak for themselves.

Sincerely,

Stanley A. Terman, PhD, MDMedical Director and CEO of Caring AdvocatesCarlsbad, CA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 20, 2012

SUBJECT:  Why Physician-Assisted Dying is NOT for dementia patients; (response to Mr. Ellenbogen by Stanley A. Terman, PhD, MD, who wrote a NAPA public comment on March 26 2012)

Why physician-assisted suicide/dying cannot help patients who have dementia

Mr. Ellenbogen brings up an important point, one that concerns many people who worry about dementia: Briefly: Is there a way for them to exit in a dignified way that is also timely?

Mr. Ellenbogen expressed this fear well, and I feel compassion for him. His stated problem begs for an effective solution. Yet the one he proposed is seriously flawed from several points of view: the clinical, practical, ethical, moral, and psychological, as well as legal.

The points of agreement and the one point of disagreement that I have with Michael Ellenbogen is within his key paragraph that I copied below and then respond to, point-by-point, by adding my specific comments:

Mr. Ellenbogen wrote: "You need to make plans when you are still able to think clearly. You must figure out a method so you know what to do when the time comes. The scary part for me is knowingwhen the right time may be. You do not want to go earlier then you have to, but you do not want to wait until the point where you may not be able to decide to do it, or remember how to do it. That is why I am a true believer in assisted suicide. It would be nice to let someone know my wishes far in advance, and when we get to that point they would instruct me on what I had to do. This way, my family and I could get the most out of my life without question."

First a general comment: Mr. Ellenbogen expresses what I have been calling the "Dementia Fear," when he writes: "You do not want to wait until the point where you may not be able to decide to do it, or remember how to do it," since by the word, "IT," he really means suicide. More typical is this blunter statement: "If I don't kill myself now (when I can), I won't be able to kill myself later (when I want to)." The consequence of acting on this fear is "premature dying," which violates the principle of the sanctity/preciousness of life. This is the problem for which Mr. Ellenbogen is searching for a solution.

Now, point-by-point:

Yes, I agree: "You need to make plans while you still have the mental capacity to make end of life treatment decision." Let me add: One way to do this is to create a clear and specific Living Will and to appoint a proxy/agent whom you trust to make sure that others will honor the wishes you previously expressed in your Living Will. The document designates your proxy/agent must give the appointed individuals sufficient power to facilitate your last wishes.

Yes, I agree: "You need to figure out a method so you know what to do." To respond: My personal choice, and what I advise my patients to consider is to forgo the continuation of another person's hand to assist oral feeding and drinking. This is what I have been calling "Natural Dying." Important: food and fluid are always placed near enough to reach so that if you regained the ability to eat independently, you could. Forgoing treatment that has become extraordinary or disproportionate is both legal and moral.

Yes, I agree: "The scary part is knowing when the right time may be." Appreciating that you will lose the ability to decide on that time later means you must make this decision while you still can. The goal of TIMELY DYING is possible if you can trust your proxy/agent and your future physician to engage in the process of "shared decision-making." Then, someday, they will compare your future condition with the decisions you expressed in your clear and specific Living Will to decide if it is time for "Natural Dying."

Important: Assisted suicide is not legal for patients who have dementia, even in Oregon, Washington, or Switzerland. While legal in theory, it is very rarely practiced in Holland because physicians do not feel comfortable killing a patient who cannot contemporaneously express the wish to die. Dutch physicians also do not feel comfortable killing a patient whose major issue is their anticipatory fear of greater suffering and burdens in the future; they insist that patients have unbearable suffering which cannot be relieved in any way other than by dying--which is NOT the case for patients in the early or middle stages of dementia. Even for patients who had such terminal diseases as cancer or neurological diseases (which comprise the majority of patients who used Oregon's "Death With Dignity Act"), only 600 people died this way since 1997. Compare this number to the one to two million people who currently are suffering in the advanced stage of dementia--a number that will triple by mid-century. Thus, physician-assisted dying cannot be a practical, legal, or ethical answer for a prolonged dying with much suffering for patients who reach the stage of advanced dementia.

Yes, I agree: "It would be nice to let someone know my wishes far in advance..." and "This way, my family and I could get the most out of my life without question." This laudable goal can be accomplished by effective Advance Care Planning.

But now, a resounding NO, I do NOT agree: "When we get to that point they would instruct me on what I had to do" (e.g., how to commit suicide). Your family members would risk being indicted for a serious crime with severe penalties. They are also likely to suffer from greater moral angst and grief, if they actively helped you die when they were not sure about--as you put it "when the right time... when [I] get to that point." The best way to reduce the emotional burdens on families is to create your gift of a clear, specific Living Will and to make it clear that you are responsible for the ultimate existential decision, not them.

Let me end with a personal note to Michael Ellenbogen: I am sorry you have the diagnosis of dementia. I am glad that you are still functioning at such a high level. Unfortunately, you cannot be sure, just because each dementia patient is different, just how long you will retain your ability to exercise good judgment about end-of-life medical decisions. Now, you do. Someday... unless you die of another disease first, the irreversible, progressive disease of dementia will likely deprive you of that good judgment. (Perhaps an exception is a very well controlled vascular dementia that remains stable.) This is the reason why it is so important that you make your decisions, memorialize them, and appoint surrogates to facilitate them NOW. It would be an enormous shame and waste of your good life, if you were to commit suicide prematurely, just because you still possessed the mental capacity to make medical decisions. I hope you live as long and as well as possible.

Conflict of interest statement: Stanley A. Terman, PhD, MD, has written three books on this subject and created a deck of illustrated cards that people, even those in early dementia, can use to generate a clear and specific Living Will if they want to attain the goal of a timely and peaceful dying. (The books are "The BEST WAY to Say Goodbye: A Legal Peaceful Choice at the End of Life," "Peaceful Transitions: Stories of Success and Compassion," and "Peaceful Transitions: Plan Now, Die Later--Ironclad Strategy"; the cards are "My Way Cards for Natural Dying" or "Natural Dying Living Will Cards." Dr. Terman is the founder and Medical Director of Caring Advocates, a non-profit organization.)

Stanley A. Terman, PhD, MDBoard Certified in Psychiatry Medical Director and CEO of Caring AdvocatesCarlsbad, CAhttp://www.CaringAdvocates.orghttp://www.MyWayCards.orghttp://www.MyLastWishes.org

==========

From: Michael EllenbogenSent: Fri, Apr 20, 2012 at 7:38 AM Subject: Response to letter from Stanley A. Terman, PhD, MD, dated, March 26 2012 in the NAPA public comments about Michael Ellenbogen

I am writing to you out of frustration to the letter of Stanley A. Terman, PhD, MD, dated, March 26 2012. While I do not know what his credentials are, I can assure you 100% without doubt that he does not have any understanding of what Alzheimer's patients are capable of doing or not doing. While I have heard from all the smart doctors make the statement that if you know one Alzheimer's patient, you only know one as for their symptoms go.

While I may have trouble writing, speaking, do financing and many of the other things I so dearly miss, I am very capable of making very good judgments. In fact I still help many people who do not have dementia to help them with decisions they are unable to make.

Some people like to be in the public spot light for the wrong reasons, which is the case for this individual. If you are going to make statements, you should understand all sides, not just a one side point of view, maybe perhaps poor judgment on his part.

My wife feels that she would have no problem taking care of me all the way to the end. Since she happens to be an RN she feels she could take off for a year to become my private nurse, if and when I became bad. But I have many fears of reaching that point in my life. First of all, I do not want to be remembered as the person who could no longer talk or take care of himself. I want to leave this world with dignity and not make others feel better about themselvesbecause they kept me around to the end. I do not want to frustrate and burden their lives any more than I have. While we have had a great life, those are the thoughts I want to leave my wife with. I also hope that she finds someone new in her life so she can move on. My daughter lives in another state and I do not want her to feel obligated to move back, close to home, just to help her mother. I do not think my wife realizes what a major undertaking this is. While she may be good at what she does, she cannot handle this type of pressure.

Then of course, I do not want to suffer and be tortured for the rest of my life. There are many times, on a daily basis, when I am not always clear on what I need to do to make myself more comfortable or not suffer from pain. In the middle of the night, while sleeping, I become uncomfortable because I'm hot, so I flip the covers off my feet and feel so much better. A few hours go by, and now my feet are cold, so I replace the blanket. Now imagine that you are hot, and there is no way to remove that blanket. I would go crazy because I could not do that and would suffer. That is exactly what would happen if I could no longer do or think for myself.

My wife seems to think that those types of issues would not bother me. Who really knows? However, I do not want to be the one to find out and suffer. Sure, she can want to think it will not happen, for her peace of mind, but what about me?

Let me give you another example. I have major allergy problems and I constantly have a postnasal drip. Its major impact to me is at night and I frequently wake up gagging and coughing in an effort to clear my nose and throat. Sometimes I can waste 45 minutes before I finally resolve the issue. I actually suffer today and feel tortured at times. Can you imagine if that happens to me and I cannot let someone know what's bothering me and cannot do anything for myself. That frightens me to no end. My allergist has run out of options with me. This problem has really become much worse this year.

One last example. I am particular about how my pillow feels when I go to sleep. I like it to be very fluffed up. Usually once during the night I tend to flip it so that I get the fluffed end again, and it feels so much better when I do that.

People may tell you to wait until it gets worse, but they are wrong. You need to make plans when you are still able to think clearly. You must figure out a method so you know what to do when the time comes. The scary part for me is knowing when the right time may be. You do not want to go earlier then you have to, but you do not want to wait until the point where you may not be able to decide to do it, or remember how to do it. That is why I am a true believer in assisted suicide. It would be nice to let someone know my wishes far in advance, and when we get to that point they would instruct me on what I had to do. This way, my family and I could get the most out of my life without question.

There are many other reasons I can go into, but I need to go to a funeral for a family member who final passed away after years of torture. He finally passed from Parkinson Disease the other day. He was zombie and scared and had no life. He had living will that was over ridden because some family member was going to have a wedding and they decide to put feeding tube in when he would have probably died in another day or two. Now that is poor judgment from people like you.

Please see Stanley A. Terman letter below.

Regards,

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money" http://www.michaelellenbogen.comhttp://www.michaelellenbogenmovement.com/

==========

DATE: March 26, 2012SUBJECT: Submitting my COMMENT based on my telephonic statement of March 14, 2012 to the Advisory Council

This letter is very similar to my oral testimony (a few corrected typos and better words)--except for my adding a new paragraph at the beginning--to respond more fully to a public comment that preceded mine:

A person (Michael Ellenbogen?) who currently suffers from mild Alzheimer's dementia concluded his comments by recommending the Advisory Council on Alzheimer's Research, Care, and Services consider the "right-to-die" option. He thus implied that Physician-Assisted Dying could be an option for patients who suffer from dementia. Because of time limitations, I could only disagree briefly by saying that Physician-Assisted Dying will neither help nor is needed. I now explain more: (1) Why would Physician-Assisted Dying NOT help? Where Physician-Assisted Dying is legal, the law requires patients be of "sound mind" when they ask their physician to write a prescription for a lethal dose of medication. Yet dementia patients lose the mental capacity to make medical decisions early in the course of this progressive disease. Thus for dementia patients, Physician-Assisted Dying would compound their tragedy with premature dying. This is because dementia patients can have much good life after they lose capacity--and they can expect more, with further research--so I and many others consider premature dying an act that violates the principle that life is precious. (2) Why is Physician-Assisted Dying NOT needed? Because Living Will forms and the discussions they provoke can be both moral and effective. Combined with other clinical and strategic forms, diligent Advance Care Planning can give people peace of mind, whether they are still well or in the early stage of dementia. They need not worry about being forced to linger for months to years by enduring the huge burdens and suffering that characterize Advanced Dementia. Instead, they can feel confident that others will honor their Known Wishes after they lose the ability to speak for themselves.

Sincerely,

Stanley A. Terman, PhD, MDMedical Director and CEO of Caring AdvocatesCarlsbad, CA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 20, 2012

SUBJECT:  Question

How do I reach out to Dr. William Shrank, MD at the CMMI?

Dr. Ling sent me his email but no response as of yet. I wish to apply for a demonstration project to improve the quality of care for patient with AD using a "wrap around" at risk approach which was outlined in m letter to you a few weeks back (see attached).

Thank you,

Dr. Joel Ross

ATTACHMENT:

I am Joel S Ross MD. I have provided medical care for over 10,000 victims of Alzheimer's Disease since starting my comprehensive geriatric and Alzheimer's Disease practice in 1986. I would like to present my comments on the NAPA plan. I am a member of the advisory panel of NAPA and through my organization, The Memory Enhancement of America we provide an unprecedented level of care and treatment to all those afflicted with memory loss/mild cognitive impairment and dementia due to Alzheimer's Disease.

I would desire to discuss the urgent need to open a demonstration project in our 6th congressional district.

This Memory Evaluation and Treatment Center (METC) will provide complete and comprehensive management for mild, moderate and severe stages of Alzheimer's Disease. Funded in part by the a portion of the 83 million dollars signed into law by President Obama it shall include but not limit itself to providing medical/nursing/social/psychological care of AD patients as well as offer physical and occupational therapy; address the many ethical, financial and legal challenges this deadly disease poses to patients, caregivers and society in general. This METC will show cost effectiveness by reducing unnecessary hospitalization, reducing need for emergency room visits, delay nursing home if not eliminate the need for such placement as well as be a center of excellence for all other 434 Congressional districts in our wonderful nation. Pharmaceutical research of the highest caliber testing safety and efficacy of the latest medications in development will be a further extension of METC.

All at no cost to the patient. I propose that Medicare/Medicaid and a portion of NAPA money be used to test this METC concept and in a randomized study using a group of 200 AD patients assigned to traditional (fragmented and inefficient, standard of care) and comparing them to a similarly matched group of 200 AD patients assigned to METC care.

I and my many colleagues and other professional associates and organizations believe quite strongly and will prove a METC is the only place for AD patients to receive comprehensive, compassionate and welcomed care.

My bio is attached for your review.

I welcome the opportunity to speak at the April 17th meeting on behalf of the nearly 5.5 million victims of AD as well as for those who have died from this dreadful 100% fatal disorder.

Thank you for the time to consider my suggestions,

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 20, 2012

SUBJECT:  Response to letter from Stanley A. Terman, PhD, MD, dated, March 26 2012 in the NAPA public comments about Michael Ellenbogen

I am writing to you out of frustration to the letter of Stanley A. Terman, PhD, MD, dated, March 26 2012. While I do not know what his credentials are, I can assure you 100% without doubt that he does not have any understanding of what Alzheimer's patients are capable of doing or not doing. While I have heard from all the smart doctors make the statement that if you know one Alzheimer's patient, you only know one as for their symptoms go.

While I may have trouble writing, speaking, do financing and many of the other things I so dearly miss, I am very capable of making very good judgments. In fact I still help many people who do not have dementia to help them with decisions they are unable to make.

Some people like to be in the public spot light for the wrong reasons, which is the case for this individual. If you are going to make statements, you should understand all sides, not just a one side point of view, maybe perhaps poor judgment on his part.

My wife feels that she would have no problem taking care of me all the way to the end. Since she happens to be an RN she feels she could take off for a year to become my private nurse, if and when I became bad. But I have many fears of reaching that point in my life. First of all, I do not want to be remembered as the person who could no longer talk or take care of himself. I want to leave this world with dignity and not make others feel better about themselvesbecause they kept me around to the end. I do not want to frustrate and burden their lives any more than I have. While we have had a great life, those are the thoughts I want to leave my wife with. I also hope that she finds someone new in her life so she can move on. My daughter lives in another state and I do not want her to feel obligated to move back, close to home, just to help her mother. I do not think my wife realizes what a major undertaking this is. While she may be good at what she does, she cannot handle this type of pressure.

Then of course, I do not want to suffer and be tortured for the rest of my life. There are many times, on a daily basis, when I am not always clear on what I need to do to make myself more comfortable or not suffer from pain. In the middle of the night, while sleeping, I become uncomfortable because I'm hot, so I flip the covers off my feet and feel so much better. A few hours go by, and now my feet are cold, so I replace the blanket. Now imagine that you are hot, and there is no way to remove that blanket. I would go crazy because I could not do that and would suffer. That is exactly what would happen if I could no longer do or think for myself.

My wife seems to think that those types of issues would not bother me. Who really knows? However, I do not want to be the one to find out and suffer. Sure, she can want to think it will not happen, for her peace of mind, but what about me?

Let me give you another example. I have major allergy problems and I constantly have a postnasal drip. Its major impact to me is at night and I frequently wake up gagging and coughing in an effort to clear my nose and throat. Sometimes I can waste 45 minutes before I finally resolve the issue. I actually suffer today and feel tortured at times. Can you imagine if that happens to me and I cannot let someone know what's bothering me and cannot do anything for myself. That frightens me to no end. My allergist has run out of options with me. This problem has really become much worse this year.

One last example. I am particular about how my pillow feels when I go to sleep. I like it to be very fluffed up. Usually once during the night I tend to flip it so that I get the fluffed end again, and it feels so much better when I do that.

People may tell you to wait until it gets worse, but they are wrong. You need to make plans when you are still able to think clearly. You must figure out a method so you know what to do when the time comes. The scary part for me is knowing when the right time may be. You do not want to go earlier then you have to, but you do not want to wait until the point where you may not be able to decide to do it, or remember how to do it. That is why I am a true believer in assisted suicide. It would be nice to let someone know my wishes far in advance, and when we get to that point they would instruct me on what I had to do. This way, my family and I could get the most out of my life without question.

There are many other reasons I can go into, but I need to go to a funeral for a family member who final passed away after years of torture. He finally passed from Parkinson Disease the other day. He was zombie and scared and had no life. He had living will that was over ridden because some family member was going to have a wedding and they decide to put feeding tube in when he would have probably died in another day or two. Now that is poor judgment from people like you.

Please see Stanley A. Terman letter below.

Regards,

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money" http://www.michaelellenbogen.comhttp://www.michaelellenbogenmovement.com/

==========

DATE: March 26, 2012SUBJECT: Submitting my COMMENT based on my telephonic statement of March 14, 2012 to the Advisory Council

This letter is very similar to my oral testimony (a few corrected typos and better words)--except for my adding a new paragraph at the beginning--to respond more fully to a public comment that preceded mine:

A person (Michael Ellenbogen?) who currently suffers from mild Alzheimer's dementia concluded his comments by recommending the Advisory Council on Alzheimer's Research, Care, and Services consider the "right-to-die" option. He thus implied that Physician-Assisted Dying could be an option for patients who suffer from dementia. Because of time limitations, I could only disagree briefly by saying that Physician-Assisted Dying will neither help nor is needed. I now explain more: (1) Why would Physician-Assisted Dying NOT help? Where Physician-Assisted Dying is legal, the law requires patients be of "sound mind" when they ask their physician to write a prescription for a lethal dose of medication. Yet dementia patients lose the mental capacity to make medical decisions early in the course of this progressive disease. Thus for dementia patients, Physician-Assisted Dying would compound their tragedy with premature dying. This is because dementia patients can have much good life after they lose capacity--and they can expect more, with further research--so I and many others consider premature dying an act that violates the principle that life is precious. (2) Why is Physician-Assisted Dying NOT needed? Because Living Will forms and the discussions they provoke can be both moral and effective. Combined with other clinical and strategic forms, diligent Advance Care Planning can give people peace of mind, whether they are still well or in the early stage of dementia. They need not worry about being forced to linger for months to years by enduring the huge burdens and suffering that characterize Advanced Dementia. Instead, they can feel confident that others will honor their Known Wishes after they lose the ability to speak for themselves.

Sincerely,

Stanley A. Terman, PhD, MDMedical Director and CEO of Caring AdvocatesCarlsbad, CA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 19, 2012

SUBJECT:  Eldercare Workforce Alliance NAPA Comments

Thank you for the opportunity to provide comments at the meeting of the Advisory Council on Alzheimer's Research, Care, and Services on Tuesday. A hard copy of the oral comments we shared is attached as well as a copy of the written comments we submitted previously.

Gail MacInnesPolicy Advisor & AnalystEldercare Workforce Alliance

ATTACHMENT #1:

On behalf of the Eldercare Workforce Alliance, a coalition of 29 national organizations committed to addressing the immediate and future workforce crisis in caring for an aging America, we thank you and the Advisory Council on Alzheimer's Research, Care, and Services for your work to forumulate the Draft National Plan to Address Alzheimer's Disease.

We commend the Council for its recognition of the vital importance of a strong workforce for realizing the goals of the Plan, as demonstrated in strategies 2.A and 2.C, which call for the building of a workforce with the skills to provide high-quality care, as well as the strategies under Goal 3, in support of family caregivers.

While the action items located under Strategy 2.A are significant, we remain concerned that the essential workforce goals identified by the Council cannot be realized without the investment of additional resources. Specifically, the action items calls for additional and enhanced activities within Geriatric Education Centers (GEC), the Comprehensive Geriatric Education Program (CGEP), the Geriatric Academic Career Awards Program (GACA), the Geriatric Training for Physicians, Dentists, and Behavioral and mental Health Providers (GTPD) program, and the Direct-Care Workforce training program. These programs, which are administered through the Health Resources and Services Administration (HRSA) under the Title VII and VIII of the Public Health Service Act, are in constant danger of defunding and have experienced stagnant funding that has not kept up with the pace of inflation, even as the need for preparation to care for older adults has skyrocketed. To implement these additional and enhanced activities in order to realize the goal of enhancing care quality and efficiency for the growing number of older adults with Alzheimer's disease and other multiple chronic conditions additional funding must be invested.

We believe that access to quality health care for older adults with cognitive impairment is vital to healthy aging and we commend you for your efforts. As the work of the committee continues, we welcome opportunities to work with you.

Sincerely,

Nancy Lundebjerg, MPA
EWA Co-Convener

Michele J. Sanders, DMD, MS, MPH
EWA Co-Convener

ATTACHMENT #2:

Eldercare Workforce Alliance Comments for
The Advisory Council on Alzheimer's Research, Care, and Services
April 17, 2012

On behalf of the Eldercare Workforce Alliance, a coalition of 29 national organizations committed to addressing the immediate and future workforce crisis in caring for an aging America, thank you for your work to formulate recommendations for operationalizing the Draft National Plan to Address Alzheimer's Disease.

We commend the Council for its recognition of the vital importance of a strong workforce for realizing the goals of the Draft Plan, outlined in strategy 2.A, which calls for the building of a workforce with the skills to provide high-quality care, as well as the strategies under Goal 3, in support of family caregivers.

While the action items outlined in the Draft Plan and the recommendations you have voted on here today are significant, EWA strongly urges the Council to consider the following comments in order to achieve the essential workforce goals identified in the Draft Plan: -

  • EWA strongly supports the Clinical Care Subcommittee's Recommendation #8 to invest additional funding in multidisciplinary geriatrics education and training programs under Title VII and VIII of the Public Health Service Act. Action items under Strategy 2.A of the Draft Plan call for additional and enhanced activities within these programs; however, they have experienced stagnant funding and constant threats of defunding, even as the need for preparation to care for older adults has skyrocketed. Some of the programs authorized in the Affordable Care Act have yet to receive appropriations. To implement the additional activities called for in the Draft Plan to enhance care quality and efficiency for the growing number of older adults with Alzheimer's disease and other multiple chronic conditions, additional funding must be invested.
  • EWA strongly supports the Clinical Care Subcommittee's recommendation to increase funding for loan repayments and other incentives for those who study geriatrics and gerontology. We recommend that geriatrics and gerontology be made permanently eligible via statute for federal loan forgiveness and other efforts to boost enrollment in these medical disciplines.
  • EWA strongly supports the Council's recommendations with regard to promotion of geriatric education offerings and the dissemination of information about Alzheimer's disease, dementia care, and support systems. EWA believes that geriatric competencies and dementia training should be included in training for all primary care clinicians and staff to improve detection, treatment and care for people with Alzheimer's disease.
  • EWA strongly supports the Long-Term Services and Supports Subcommittee's recommendations for health care provider training and for adequate training and compensation for paraprofessional caregivers. More specifically, we recommend that certified nursing aides and home care aides and their supervisors be required to take at least 120 of training, including explicit geriatric care and gerontological content; and that minimum training standards/competencies for non-clinical direct-care workers should be created and that they should be adequately compensated.
  • EWA urges the Council to consider more specific recommendations on improving access to Medicare and Medicaid funded home- and community-based care services to allow individuals with Alzheimer's disease to stay in their homes as long as possible.
  • EWA strongly supports the Council's recommendations to expand and increase funding for AoA programs such family planning and social services, research and development projects, and training in the field of aging; respite care; support services for family caregivers that can help reduce their burden.

We believe that access to quality health care for older adults with cognitive impairment is vital to healthy aging and we commend you for your efforts. As the work of the Council continues, we welcome opportunities to work with you to achieve the goals of the National Plan.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 18, 2012

SUBJECT:  Follow up RE: Comments on Draft National Plan to Address Alzheimer's Disease; Down syndrome

I am writing to follow up on my previous email below that included attached comments concerning the Draft National Alzheimer's Plan, to make sure that you did receive my email & comments (I have also attached another copy to this email). I understand that the next NA Plan Advisory Council meeting is scheduled for tomorrow, April 17, and also wanted to be sure the copy of my comments was submitted to the Advisory Council for consideration and appropriate discussion.

Could you confirm?

I understand the Advisory Council meeting tomorrow will be available for live streaming via the internet; am I correct that there will be no teleconference of the meeting or opportunities for external input?

Are there other recipients (or postings) relevant to the development of the Plan to which it would be appropriate to provide these comments?

Thank you very much,

Michael M. Harpold, Ph.D.Chief Scientific OfficerChair, Scientific Advisory BoardDown Syndrome Research and Treatment Foundation

==========

From: Michael HarpoldSent: Thursday, March 29, 2012 7:08 AM Subject: Comments on Draft National Plan to Address Alzheimer's Disease; Down syndrome

I am uncertain whether my comments on the Draft National Plan to Address Alzheimer's Disease (see attached) are most appropriate to be sent to you, as liaison with the Advisory Council, and/or napa@hhs.gov (representing address for public comments), as I am unclear whether there is a distinction. I believe my comments may be most appropriate and relevant for the Advisory Council and their considerations, and therefore sending to you. Please let me know if I should also send directly to napa@hhs.gov.

I appreciate the opportunity to participate in the March 14 Advisory Council teleconference as well as the opportunity to submit my comments on the Draft National Plan to Address Alzheimer's Disease and its importance for the more than 400,000 individuals with Down syndrome in the US and their families and caregivers as well as associated stakeholders. More explicit inclusion of Down syndrome as integral to the Plan, particular concerning fundamental, translational and clinical research, will be important for accelerating progress and success not only for individuals with Down syndrome, and associated very high Alzheimer's disease neuropathology and dementia, but also for the entire population that will develop or currently have Alzheimer's disease.

Should you have any additional questions etc., please do not hesitate to contact me.

Thank you,

Michael M. Harpold, Ph.D.Chief Scientific OfficerChair, Scientific Advisory BoardDown Syndrome Research and Treatment Foundation

ATTACHMENT:

Comments Regarding
Draft National Plan To Address Alzheimer's Disease
March, 2012

Thank you for the development of the Draft National Plan to Address Alzheimer's Disease, and for the opportunity to submit comments.

The Down Syndrome Research and Treatment Foundation is a national/international 501(c)(3) nonprofit organization with the mission to stimulate and support biomedical research that will accelerate development of treatments to significantly improve cognition, including memory, learning and speech, for children and adults with Down syndrome. The major objectives include creating new opportunities for all Individuals with Down Syndrome to: 1) Lead more independent lives; 2) Participate more successfully in schools & employment; and 3) Prevent additional early cognitive decline with aging & Alzheimer's disease. Since its founding in 2004, DSRTF, through its novel research strategy and grants program, has identified and substantively supported much of the research that has led to the recent rapid and unprecedented advances in Down syndrome cognition research and the first clinical trial with a novel drug candidate to focus on as a primary indication and specifically address overcoming cognitive and behavioral impairments in individuals with Down syndrome by a major international pharmaceutical company, Roche.

We acknowledge and appreciate the explicit recognition, inclusion and designation of attention to intellectual disabilities populations as unequally burdened by Alzheimer's disease within Strategy 2.H: Improve care for populations disproportionally affected by Alzheimer's disease and for populations facing care challenges. However, this is far too limited within the overall plan; it is more than just initiatives addressing only care. As discussed further below, there is a very strong rationale to explicitly include Down syndrome in each of the strategies, and designated strategic sub-actions, comprising the National Alzheimer's Plan and resulting initiatives, and Strategy 1 involving fundamental, translational and clinical research in particular.

As research has documented, virtually all individuals with Down syndrome, now numbering more than 400,000 individuals in the US, develop the characteristic neuropathology associated with Alzheimer's disease by age 40. Research has also shown that, very conservatively, at least 25% increasing to 75% or more of the individuals with Down syndrome between the ages of 40-60 develop the signs and symptoms of Alzheimer's-type dementia and the percentage increases with age. These facts underscore the very significant and important relevance of this population as a key and explicit element to be included not only in the National Alzheimer's Plan but also in the development and implementation of all aspects of the Plan, including research (fundamental, translational, and clinical) to effectively prevent and treat Alzheimer's disease, enhancing care quality and delivery, and expanding supports for people with Alzheimer's disease and their families. Given these facts, explicit and integral inclusion and consideration of Down syndrome in the Plan and associated initiatives can not only significantly address the significant number of individuals with Down syndrome but also the larger non-Down syndrome population developing or with Alzheimer's disease. This requires significant increases in awareness and rational considerations among researchers and clinicians, which can be partly addressed through explicitly including Down syndrome more prominently in the Plan as well as in resulting initiatives and increased proportional funding.

Given the significant size of the Down syndrome population (>400,000 in the US, and up to 10-times that number worldwide) and the virtual certainty that the individuals will develop the characteristic neuropathology of Alzheimer's disease and ultimately the associated dementia further compromising their cognition and life, inclusion of Down syndrome, particularly in the research initiatives (fundamental, translational, and clinical) would significantly contribute important novelty, unavailable otherwise, to as well as enhance and accelerate essentially all aspects of the major objectives specified under Goal 1: Prevent and Effectively Treat Alzheimer's Disease by 2025 as well as Goal 2. NIH grants and funding for all of Down syndrome research have remained disproportionately very low, e.g. $20M in FY 2011. This includes a much smaller and too limited subset of research grants investigating the aspects of Alzheimer's disease associated with Down syndrome. As only one contrasting example, explicit and significant attention and funding by NIH and its Alzheimer's disease research initiatives, both basic and translational, have been targeted to so-called dominantly inherited Alzheimer's disease, both basic and translational (see e.g., the DIAN initiative) that is much more rare and with a much smaller population. In both Down syndrome and dominantly inherited Alzheimer's disease myriad research has confirmed the significant involvement of the same gene, APP, and its products (The APP gene is located on human chromosome 21, the chromosome trisomic in Down syndrome, as are a number of additional genes demonstrated to be involved in mechanisms associated with Alzheimer's disease.). Through more detailed and sufficient investigations in the Down syndrome population, researchers can obtain invaluable insight into how and why Alzheimer's disease develops, and can compare and extend their findings to the much more common late-onset sporadic Alzheimer's disease as well as enhance and accelerate development of new therapeutics. The relevant trajectory to Alzheimer's disease and size of the Down syndrome population provides a strong rationale for greater recognition and explicit inclusion in the National Alzheimer's Disease Plan and resulting Alzheimer's disease fundamental, translational and clinical research initiatives.

Although by no means an attempt to thoroughly include detailed or exhaustive rationale and recommendations in these comments here, in addition to the suggestions and requests above with respect to more prominent and explicit integral recognition and inclusion of Down syndrome in the ultimate version of the National Alzheimer's plan, I submit the following recommendations for further consideration:

  • Explicitly recognize and include discussion and components specifically involving Down syndrome in Goal 1 as well as each of the proposed "Actions" under Strategy 1A, including Actions 1.A.1-5.
  • Explicitly recognize and include discussion and components specifically involving Down syndrome in Strategy 1.B. including Actions 1.B.1-6. This would include not only research in animal models of Down syndrome, but with respect to human clinical studies explicit designation and inclusion of relevant and appropriate cohorts of individuals with Down syndrome, together with and/or in parallel/addition to those clinical studies initiatives involving non-Down syndrome cohorts. The results would be expected to be mutually informative and beneficial.
  • Explicitly recognize and include discussion and components specifically involving Down syndrome in Strategy 1.C. including Actions 1.C.1-2. Again, given that essentially every individual with Down syndrome develops the characteristic neuropathology associated with Alzheimer's disease by age 40 with a significant proportion also developing the signs and symptoms of Alzheimer's-type dementia and further increases with age earlier, inclusion of relevant and appropriate cohorts of individuals with Down syndrome, together with and/or in parallel/addition to these research initiatives involving non-Down syndrome cohorts would uniquely provide important relevant and additional information, insights, direction and acceleration of success.
  • As is true for Alzheimer's disease research and development, relevant Down syndrome research is ongoing, and increasing, internationally. It will be important to coordinate with and expand relevant Down syndrome research internationally and collaboratively. Therefore, explicitly recognize and include discussion and components specifically involving Down syndrome in Strategy 1.D. including Actions 1.D.1-2.
  • Explicitly recognize and include discussion and components specifically involving Down syndrome in Strategy 1.E. including Actions 1.E.1-3. With respect to Action 1.E.1., again, given that essentially every individual with Down syndrome develops the characteristic neuropathology associated with Alzheimer's disease by age 40 with a significant proportion also developing the signs and symptoms of Alzheimer's-type dementia and further increases with age earlier, inclusion of relevant and appropriate cohorts of individuals with Down syndrome, together with and/or in parallel/addition to these research initiatives involving non-Down syndrome cohorts would uniquely provide important relevant and additional information, insights, direction and acceleration of success. With respect to Action 1.E.2., inclusion of private-public collaborations and partnerships between Federal entities such as NIH and non-governmental nonprofit organizations such as DSRTF with its focus on Down syndrome cognition research will enhance productivity, accelerate significant progress and success as well as minimize duplications of efforts and resources. With respect to Action 1.E.3., the critical importance of the increasing development and very significant impact of Alzheimer's disease on individual with Down syndrome and their families and care givers underscores the importance of involvement and communication with this community and associated stakeholders.
  • As indicated above, given the particular and significant relevance and importance of and impact of Alzheimer's disease on the relatively large population of individuals with Down syndrome, their families and caregivers as well as the healthcare system, it is not sufficient to generally designate "intellectual disabilities" in only Strategy 2.H. "Down syndrome" should be explicitly included in proposed Strategies 2.A.-H., 3.A.-E., 4.A.-B. and each of the Actions included under those strategies. Therefore, explicitly recognize and include discussion and components specifically involving Down syndrome in Strategies 2.A.-H., 3.A.-E., 4.A.-B. and each of the Actions included under those strategies.
  • Finally, based on the comments, rationale and recommendations outlined above, we would encourage and recommend that a representative from the Down syndrome community be added to the National Alzheimer's Project Act (NAPA) Advisory Council, as the important deliberations, priorities and implementation will have mutual benefits to science/research, clinical care, and long term care not just additionally for individuals with Down syndrome and associated Alzheimer's disease but also for the broader population and research efforts involving Alzheimer's disease.

I would be very pleased to further discuss, as may be helpful and informative, any aspects of the above concerning the importance of explicit inclusion and considerations of Down syndrome relating to Alzheimer's disease in further detail with those involved in developing the National Plan, including members of the Advisory Committee. I have registered for and plan to attend the upcoming May 14-15 NAPA/NIH Alzheimer's Disease Research Summit in Bethesda, and look forward to the opportunity for further discussion of the importance and relevance of Down syndrome for the Plan and its successful implementation as outlined above.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 17, 2012

SUBJECT:  Family Caregiver Alliance Input on Today's Meeting

Family Caregiver Alliance would like to submit the attached comments into the official record for today.

Thank you,

Sean Coffey, MPAPolicy SpecialistNational Center on Caregivingon behalf of Kathy Kelly, Executive Director of Family Caregiver Alliancehttp://www.caregiver.org

ATTACHMENT:

I am writing on behalf of family caregivers throughout the United States who are struggling to provide care for their loved ones with Alzheimer’s disease and related dementias. The National Center on Caregiving at Family Caregiver Alliance supports many of the recommendations contained in the presentation handout and would like this letter submitted for the formal record.

Long-Term Services and Supports Subcommittee Recommendations

1) HHS should provide Federal Funds to support a state lead entity in every state and territory. This entity would coordinate available public and private LTSS, conduct service gap analysis, identify opportunities for efficiency, and enable ongoing stakeholder input to address needs across all sectors and systems. Bullet point #7: HHS should fully fund the costs of cognitive impairment and caregiver surveillance through the Behavioral Risk Factor Surveillance System (BRFSS) in every state.

FCA: We support using the caregiver module in BRFSS in every state. However, in our communication with states that have included the caregiver module in their BRFSS, not all states had the funding or infrastructure to properly analyze the data after it was collected. Therefore, HHS should also include funding for the analysis of the data after it has been collected.

4) Fully fund Caregiver Supports under AoA. AoA currently has a Caregiver Support Program, a component of which can be expanded to better meet the needs of caregivers of individuals with Alzheimer’s disease and other dementias.

FCA: An article in American Family Physician, released in 2011, (“Caregiver Care”) focused on the importance of caregiver assessment. In it, the authors noted that the National Family Caregiver Support Program (NFCSP) received $154 million in federal funding in FY 2009, “approximately one-twentieth of 1 percent of the value of caregiver contributions.” Family Caregiver Alliance strongly supports fully funding this program that helps families navigate the many complexities of long-term care for a loved one.

5) Assure a robust, dementia capable system of Long Term Services and Supports (LTSS) is available in every state. Bullet Point #6: CMS should provide guidance to all states on adding adult day services as a state optional service under Medicaid.

FCA: Caregivers in California were faced with the elimination of the Adult Day Health Care program (stopped only by a lawsuit) in 2011 because it is an “optional” benefit in Medi-Cal. Given the nature of caregiving for a person with dementia, especially in its advanced stages, services like adult day programs are not “optional” for caregivers. They are vital sources of respite for families who may also be balancing jobs and raising children. Therefore, we believe that the conversation should focus on how to ensure that every family has access to adult day services. When a service like Adult Day Health Care is considered “optional,” it often lands on the chopping block during economic downturns, (as California caregivers experienced in 2011) and families are left to try and piece together alternatives.

12) HHS and State Lead Entities should assure that caregiver physical health/ behavioral health risk is assessed and addressed regularly. Caregiver illness and mortality contribute to the enormous personal and financial cost of Alzheimer’s disease. The health and well-being of a caregiver has a direct impact on the health and quality of life of a person with Alzheimer’s disease.

FCA: While we support assessing caregivers and connecting them with services, we also advocate for a person and family-centered approach to care. While the health of the caregiver does have an impact on the health and quality of life of a person with Alzheimer’s disease, the opposite is also true. People who become caregivers face increased risks of depression, stress, exhaustion, cognitive decline, and higher mortality rates. Instead of viewing the caregiver’s needs merely in relation to how this will support their caregiving role, it is also important to recognize caregivers and their health (psychological, emotional, physical, and financial) as a separate priority in addition to the care receiver.

Family Caregiver Alliance is grateful for the opportunity to provide our input on ehalf of the over 15 million Americans currently caring for a loved one with lzheimer’s and related dementias. b A Sincerely, Kathleen Kelly, MPA, Executive Director

Sincerely,

Kathleen Kelly, MPA, Executive Director

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 17, 2012

SUBJECT:  Comments

Attached, please find comments relating to the National Plan to Address Alzheimer's Disease from national public health organizations. These comments address the public health elements of the Plan. A paper copy of the comments were also sent on April 6, 2012.

Thank you.

Catherine Morrison

ATTACHMENT:

As national public health organizations representing state and local public health practitioners, educators, providers, agency officials, and academicians, we are writing to urge you to ensure that the National Plan to Address Alzheimer’s Disease includes public health as a key feature of its structure and implementation.

We applaud the department’s effort to utilize the resources of the aging network traditionally drawn upon in dealing with Alzheimer’s disease. However, the Plan does not fully engage the public health community at federal, state, and local levels. This risks overlooking the work of the Centers for Disease Control and Prevention (CDC) and specifically the Healthy Aging Program’s work. Additionally, states have begun to use their public health networks to confront Alzheimer’s as broadly as possible. We believe the most successful implementation of the Plan will be through a population based, public health approach.

Therefore, as your agency develops the final version of the Plan, we urge you to include these critical elements:

(1) A clear statement of Alzheimer’s disease as a public health crisis and its burden. Alzheimer’s and other dementias are a major public health issue and will increasingly affect the health and well-being of the population until effective interventions are available. In the United States, 5.4 million Americans are living with Alzheimer's disease, costing society an estimated $200 billion this year. In addition, more than 15 million friends and family members provide unpaid care to those with Alzheimer’s and other dementias -- care valued at over $210 billion. Public health takes a broad view of health care and seeks to achieve lasting change in the health of entire populations, extending far beyond the medical treatment of individual people. The tools and techniques of public health are expansive in scope and required for successful implementation of the Plan.

(2) Addressing the connection between Alzheimer’s and other multiple chronic conditions from a public health perspective. At least three-quarters of people with Alzheimer’s and other dementias have one or more other chronic conditions. Yet, the National Plan to Address Alzheimer’s Disease does not mention chronic disease or multiple chronic conditions from a public health perspective. Additionally, the Plan does not mention the HHS Initiative on Multiple Chronic Conditions, which includes both individuals with cognitive impairment and their caregivers as important considerations. The role of state and local health departments in coordinating efforts to reduce disabilities, improve functioning, and enhance quality of life for individuals with multiple chronic conditions is vital to the implementation of the Plan. Examples of these programs include Chronic Disease Self-Management and Falls Prevention programs. The importance of recognizing, effectively treating, and minimizing the impact of multiple chronic conditions, including the impact that Alzheimer’s has on managing other chronic conditions, could be highlighted in Goals 2 and 4.

(3) Surveillance. The Plan rightly includes Goal 5 to improve data to track progress, but it omits important surveillance and data collection work by the CDC and its state level partners. Work conducted through the Behavioral Risk Factor Surveillance Survey (BRFSS), the world’s largest telephone-based health interview survey, now allows states to conduct surveillance on cognitive impairment (CI) and caregiving. These data are essential to understand the burden and impact of Alzheimer’s, cognitive impairment, and caregiving at state and local levels -- data that does not currently exist. With similar data in the areas of obesity, diabetes, and arthritis, state and local leaders have been able to make impressive gains in public health programs and policies using BRFSS information. The CDC has been a leader in the development and implementation of these questions, with a majority of states now having used or currently using the CI module. The CDC Healthy Aging Program is working with partners, including the states, to ensure that all 50 states have used the module at least once by 2013. An additional action should be included in Strategy 5.A to support the important surveillance work being conducted by the CDC and its partners.

(4) A rigorous, public health-driven awareness campaign. As written, the Plan either relies on the aging network or does not comment on available public health resources to disseminate and educate the public on early diagnosis, reducing stigma around Alzheimer’s, and caregiver services. For example, the CDC Healthy Aging Program has studied diverse groups of older adults to understand communication strategies. State public health officials are skilled in working with aging adults and caregivers, efforts that could inform the Plan. Consideration of the role of public health should be included in Action 3.C.1 and Strategy 4.A.

We appreciate your commitment thus far on the issue of Alzheimer’s and on the development of a strong National Plan to Address Alzheimer’s Disease. The public health community at the local, state, and federal level is vital to the successful implementation of the Plan and to improving the lives of individuals affected by Alzheimer’s disease and their caregivers.

Thank you for considering our recommendations.

Sincerely,

National Association of Local Boards of Health
The Association of State and Territorial Directors of Nursing
The Center for Technology and Aging
FASGI Community Wellness Center
National Association of Chronic Disease Directors
National Association of County and City Health Officials
Public Health Foundation
Public Health Institute
Society for Public Health Education

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 17, 2012

SUBJECT:  Comments for Research Subcommittee Recommendations for Points 7 and 12

I would like to include the following comments for discussion at the Research Subcommittee Recommendations, Points 7 and 12.

I'm very concern about point 7, specifically sub-points (A & B), recommending HHS use existing authority to reduce drug development and taking immediate steps by HHS to go after patents and intellectual property. If the goal of this committee is to spur innovation and drug development then why attack businesses incentive to invest in the disease? If this point is passed, it may have a chilling effect for small pharmaceutical and private research organizations who's members demand a "return on investment".

And again for Point 12, the aspect of industry being made to share intellectual property because this committee votes on a process or mechanism to side step inventors patent rights or industries trade secrets will again send a chilling signal to the investment community by making investors think twice about investing in Alzheimer's Disease research and thereby creating the opposite effect this committee is trying to accomplish.

Overall, this committee needs to be pragmatic in the understanding that a cure will be discovered when a group of factors is satisfied not because of a lofty marketing idea of a cure by 2020. These factorsinclude, advancement in medical technology, better understanding of human genetics, and overall better medical training.

Thank you,

Brian Sexton

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 15, 2012

SUBJECT:  RE: April 17 meeting attendance

Attached is my letter to be read at the NAPA April 17 meeting. I tried to keep it as short as possible, but I was afraid I would lose part of the message I was trying to convey. I would have liked to focus on only one or two points, but I felt they were all very important. Maybe some were in the middle of reading you can slam a book down to get everyone's attention to refocus at my request since I am not there to get their attention. I'll be watching.

Is there a way I can send you an email to a blackberry or something if I hear something that I would like to bring up last minute as I attend the meeting from home?

Thank you again for all this. You have no idea what it means to me to be able to be a participant in this project.

Michael Ellenbogenhttp://www.michaelellenbogenmovement.com/

ATTACHMENT:

I cannot express enough the Urgency and need for interim goal at 2020 or earlier, victims cannot wait for treatment.

Resources ... 2020/2025 is goal critical but we need to mobilize the will, the plan and the resource to get there as quickly.

Save time, money and lives, by not reinventing the wheel. Use the finished HIV model. I am a firm believer that the people before us have laid the framework needed to get started so we are not wasting a lot of time on the basics. The only approach I always followed along with that is, to delete, enhance and critique to make the plan even better. Ask the previous plan makers what they did wrong and what would they do different. Ninety percent of that framework came from the best of many minds. I really believe the input and suggestions made by Bruce Lamb, in his letter from January 13, 2012 should be discussed when building this framework.

One thing that keeps coming to mind is the disparity issue related to AD. Am I the only one that sees this, or do we all just not want to talk about it? For example, AD was first identified and named in 1906, while AIDS was identified in 1981. I see us now in the same stages as HIV was in 1988, when a focused effort was begun towards treatment or cure, with the creation of The Office of AIDS Research. It took an additional 5 years to strengthen this OAR (The NIH Revitalization Act), which really made a huge difference. Within three years of that day and by 1996 we started to finally have an impact on AIDS.

Let's not make a similar mistake as we did with HIV. Let's create a diseased focused agency for AD, with all the necessary strength, as of day one. Just think you can make up for the disparity that has been created and just maybe we could have a cure in less than 5 years.

Leadership ... the President himself needs to speak out because we need everybody at the table -- not just Federal government, but industry, research community, victims and affected families, people of all ages -- and only he is in a position to provide that leadership.

Government should consider offering a large sum of money to anyone who can come up with the cure for this disease first. While I am not sure what that amount should be, it can be in cash and partial tax credits. I think that will drive many more into this arena and more efforts if the pie is big enough.

Bruce Lamb shared his viewpoints on January 13, 2012, which were very interesting. I really like these paragraphs below and we should all learn from them. Bruce makes very good points on how to evaluate the adequacy of Alzheimer's funding.

If one assumes that funding for HIV/AIDS was right sized to enable translation of basic discoveries to successful therapies, then given the lack of effective AD therapies, one possible implication is that funding for AD has been insufficient. A quick comparison of funding levels for HIV/AIDs relative to AD in the United States suggests this may be at least one factor that has hindered the translation of AD discovery to effective therapies. Based on publicly available data, National Institute of Health funding for HIV/AIDS in the United States is currently approximately $3 billion [5]. With approximately 1 million HIV-positive subjects in the United States, this equates to $3,000 of NIH funding per person with HIV/AIDs. In contrast, current NIH funding for AD is at a level of approximately $450 million [5], with perhaps another approximately $100 million to $200 million in NIH funding that might have some relevance to the study of AD (cognitive decline in aging, related neuro degenerative conditions). With a current prevalence of approximately 5 million individuals affected with AD in the United States, this equates to a maximum of $130 of NIH funding per person affected with the disease. So, on a per affected individual basis, NIH funding for HIV/AIDs is 23 times the level of that for AD.

Of course, there are many different ways to evaluate proportional or relative funding. Another one that is quite germane is economic impact. For AD in the United States this is estimated at more than $170 billion per year (and worldwide at $600 billion per year) [6]. Again focusing only on the United States, the yearly funding for research by the NIH represents 0.4% of the yearly costs of the disease in the United States. In other words, for every $2 the disease costs the United States, we spend less than 1 cent on research.

I would like to thank everyone for their hard work to date, but even more important is for you to actually follow through on the promises and plans. I am counting on you!

Michael Ellenbogen - 53 year old, living with Alzheimer's and trying to make difference.
http://www.michaelellenbogenmovement.com/

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 14, 2012

SUBJECT:  new medicare policy

I was asked to comment on the NAPA which I did. However, a more serious situation has arisen where Medicare has placed an unsurmontablehurdle in the treatment of and research with early Alzheimer's patients. I would hope you could direct my information to the appropriate groups.

I would like to inform you that National Government Services, the large carrier for Medicare in the Northeast and Midwest, has reversed their previous position and now DO NOT allow treatment of Alzheimer's patients with cognitive rehabilitation services including memory training. Despite the NIH report and AA recommendations as well as the National Alzheimer's Project Act calling for the dropping of hurdles in Medicare, NGS has removed cognitive rehabilitation as an acceptable treatment for memory loss IF it is due to a chronic disease such as Alzheimer's. If the brain disease is due to injury it is still allowed. The clear purpose of this change in the Rehabilitation LCD is to exclude Medicare recipients who suffer with AD from the services they require

I would greatly appreciate it if you could post this on a blog or other vehicle that can be read by Alzheimer advocates

Thank you

Peter

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 12, 2012

SUBJECT:  FYI

Maybe you could share this article with your people. I knew a new person gets Alzheimer's in the US every 68 seconds, but this report that just came out yesterday blew me away. I have attached it for your viewing and sharing. This was copied from an article.

Have a great day?

I know realize my mission is even more important than ever. Please, please help me.

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money"http://www.michaelellenbogen.comhttp://www.michaelellenbogenmovement.com/

ATTACHMENT:

Alzheimer's News 4/11/2012

Alzheimer's Association commends recognition of Alzheimer's and dementia as global health threat

The Alzheimer's Association strongly supports the call to action in the newly released World Health Organization (WHO) report Dementia: A Public Health Priority, which asks for all nations to develop and implement a national Alzheimer's plan, conduct greater efforts in early detection and diagnosis, and increase support of Alzheimer's disease research.

The Alzheimer's Association is pleased that the WHO, in partnership with Alzheimer's Disease International (ADI), has released its first-ever major report on Alzheimer's disease and dementia. Alzheimer's and dementia affects more than 35 million people worldwide today, and the report reveals the astonishing fact that today someone in the world develops dementia every 4 seconds; by the middle of the century more than 115 million people will be affected by the disease.

It is hoped that the comprehensive report will serve to elevate much-needed international attention to the grave health threat Alzheimer's and dementia pose to the global community today and in the years ahead.

"The World Health Organization lending its powerful voice and support to elevating awareness and understanding about Alzheimer's and dementia is very significant," said Harry Johns, Alzheimer's Association president and CEO. "It underscores the organization's recognition that Alzheimer's is a public health crisis requiring urgent global attention and action. These conditions will continue to be a major public health threat increasingly affecting the social and fiscal well-being of the global community until a concerted international effort is launched to combat it."

Already, the global cost of Alzheimer's and dementia consumes one percent of the global Gross Domestic Product (GDP), according to an ADI report. In the United States, the direct costs of Alzheimer's disease to American society will escalate from an estimated $200 billion this year to $1.1 trillion in 2050, largely due to baby boomers at increased risk for developing the disease as they age. In addition to the $200 billion dollars in care costs largely borne by government programs, Medicare and Medicaid, more than 15 million family members and friends provide unpaid care valued at $210 billion.

The new report urges countries to take a public health approach to addressing the Alzheimer's and dementia crisis while developing and strengthening policies that improve the quality of life for those living with Alzheimer's. Other goals included strong surveillance systems that allow for earlier detection of dementia and a stronger commitment to support scientific research that could one day lead to effective treatments that could stem the crisis.

The report discusses efforts in countries throughout the world to develop national plans, including highlighting the steps that the Alzheimer's Association took to mobilize advocates to urge passage and enactment of the National Alzheimer's Project Act. This legislation authorized the process currently underway in the United States to create this country's first national Alzheimer's plan. The Alzheimer's Association continues to work closely with U.S. leaders to shape a strong national plan, which will hopefully serve as a model for other countries. Fourteen countries, including France, Australia, Northern Ireland and Japan, currently have national Alzheimer's/dementia plans.

The Alzheimer's Association has long recognized the international impact of Alzheimer's and other dementias and has made significant contributions globally toward the goal of a "world without Alzheimer's." As the world's leading Alzheimer's nonprofit, the Alzheimer's Association provides premier global forums for the greatest minds in Alzheimer's science to collaborate, connect across disciplines, address common challenges and share new discoveries. This is most notably demonstrated through the Alzheimer's Association International Conference, the largest gathering of Alzheimer's scientists and researchers annually. This year's conference will take place on July 14-19 in Vancouver and is expected to be attended by nearly 5,000 of the world's foremost Alzheimer's researchers.

The Alzheimer's Association International Grants Program has been instrumental in advancing the scientific enterprise and shaping the ever evolving Alzheimer's landscape. The Association currently fund grants in 24 countries across the spectrum of Alzheimer's research from molecular biology to medical systems investigations and has awarded grants in excess of $292 million to more than 2,000 projects. In March, the Alzheimer's Association awarded its largest ever research grant -- nearly $4.2 million dollars over four years -- to the Dominantly Inherited Alzheimer's Network-Therapeutic Trials Unit (DIAN-TTU), based at Washington University School of Medicine in St. Louis, to enable the program to move forward more quickly with innovative drug and biomarker trials in people with genetically-based, young-onset Alzheimer's disease.

"The Alzheimer's Association applauds the leadership of both the WHO and ADI in their efforts to elevate global attention to Alzheimer's and dementia. It signals an understanding that the knowledge, insights and resources of all nations must be leveraged to confront the daunting public health threat of Alzheimer's and dementia," said Johns. "The Association remains committed to working with these organizations, other international bodies and countries throughout the world to illuminate the human and economic toll of the disease until the vision of a world without Alzheimer's is realized."

Alzheimer's Association
The Alzheimer's Association is the world's leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer's. For more information, visit http://www.alz.org.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 10, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

I am writing to you because of a request from USAgainstAlzheimer's, however, I'd like to make you aware of a book that has been written by Mary T. Newport, MD titled "Alzheimer's Disease, What if There Was A Cure?". She has done research on Coconut Oil which has shown significant change in her husband's Alzheimer's. In her book, she mentions that she attempted to attend an International Conference on Alzheimer's Disease.

They would not let her speak at the conference or allow her to pass out information on her research.

I find that inexcusable.

I lost my eldest sister in 2008 of the disease. It was one of the worst things I have ever been through after losing another older sister of ALS in 1996.

Thank you for you attention to this matter.

Sincerely

Michael A. DurocherCovington, LA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 10, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

Although the official comment period has closed for the NAPA draft plan, I'm writing today to urge you to go bolder with the final plan to be released by HHS later this month.

Alzheimer's is a cruel disease. It slowly steals one's intellect, ability to communicate, independence, and dignity, even control over basic bodily functions like eating and caring for personal hygiene. It also places an overwhelming burden on caregivers -- emotionally, physically, and financially.

The commitment to a 2025 deadline in the draft NAPA plan represents a major step forward in the fight against Alzheimer's. I am pleased that the plan recognizes the need for increasing enrollment in clinical trials, compressing the drug development process, accelerating targeted research, and better coordinating activities with other countries.

However, I am one of many concerned Alzheimer's advocates who believe that this first draft fails to present a strategy aggressive enough to achieve the goal of preventing and treating Alzheimer's within 13 years. It lacks specificity in terms of timelines and deadlines, provides no path to providing significantly greater resources, and does not hold a single high-level office or individual accountable for the overall plan.

I hope that HHS will address these issues so that the next version of the plan will be bolder.

With the number of Alzheimer's patients expected to triple in the coming decades, we must embrace a plan that eschews a "business-as-usual" approach and tackles Alzheimer's with the urgency and aggressiveness it requires. If not, we stand to lose millions more lives -- and trillions of dollars -- to this disease.

Thank you.

There now appears to be evidence that Alzheimer's is related in part to silver filling i.e. mercury. Please see below reference; http://articles.mercola.com/sites/articles/archive/2012/04/07/dangers-of-mercury-contamination.aspx?e_cid=20120407_DNL_art_1

Story at-a-glance

Studies show that mercury is the MOST toxic heavy metal to your body; this excellent new documentary film, Mercury Undercover, exposes the dangers of mercury contamination to human health and to the environment

The number one source of mercury pollution is coal-fired power plants. Second position is held by dental practices due to amalgam fillings, which are 50 percent mercury

Dental amalgams, used for more than 150 years, continue to be used by half of the dentists in North America despite a mountain of evidence they slowly leak toxic mercury into your body, and are particularly dangerous for children and pregnant women

Mercury becomes a "biochemical train wreck in your body," causing your cell membranes to leak, and inhibit key enzymes your body needs for energy production and removal of toxins. Mercury toxicity can lead to major inflammation and chronic illnesses such as Alzheimer's disease and Parkinson's disease

The FDA, in partnership with the ADA, have been successful for many years in concealing the dangers of amalgam from the public, but organizations such as the Consumers for Dental Choice are making inroads toward getting mercury banned from dentistry worldwide--but they need your help

By Dr. Mercola

I strongly encourage you to watch the new documentary film Mercury Undercover, which exposes just how far those in power will go to prevent you from learning the truth about mercury contamination from dental amalgam--all in the name of money.

Dental amalgam is a primitive, pre-Civil War product that is 50 percent mercury, still commonly used in dental fillings.

Angeleah DolfaySeattle, WA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 9, 2012

SUBJECT:  National Plan to Address Alzheimer's

I am pleased to see that Alzheimer's and other dementias are on the minds of our elected officials. As an adult protection worker and daughter of a mother with dementia I have seen what these diseases/illnesses can do to individuals and to their families. What is needed, especially in rural areas, is funding for more support programs/providers and education of families and providers to better understand the individual and to serve them with dignity. Each individual is unique in their deterioration, their needs, and how they should be served. Please keep the focus on Alzheimer's and other dementias in the forefront, it WILL affect you or someone you know.

Catherine C. MartinSocial WorkerPierce County, WI

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DATE:  April 6, 2012

SUBJECT:  April 17th meeting attendance

I am Joel S Ross MD. I have provided medical care for over 10,000 victims of Alzheimer's Disease since starting my comprehensive geriatric and Alzheimer's Disease practice in 1986. I would like to present my comments on the NAPA plan. I am a member of the advisory panel of NAPA and through my organization, The Memory Enhancement of America we provide an unprecedented level of care and treatment to all those afflicted with memory loss/mild cognitive impairment and dementia due to Alzheimer's Disease.

I would desire to discuss the urgent need to open a demonstration project in our 6th congressional district. This Memory Evaluation and Treatment Center (METC) will provide complete and comprehensive management for mild, moderate and severe stages of Alzheimer's Disease. Funded in part by the a portion of the 83 million dollars signed into law by President Obama it shall include but not limit itself to providing medical/nursing/social/psychological care of AD patients as well as offer physical and occupational therapy; address the many ethical, financial and legal challenges this deadly disease poses to patients, caregivers and society in general. This METC will show cost effectiveness by reducing unnecessary hospitalization, reducing need for emergency room visits, delay nursing home if not eliminate the need for such placement as well as be a center of excellence for all other 434 Congressional districts in our wonderful nation. Pharmaceutical research of the highest caliber testing safety and efficacy of the latest medications in development will be a further extension of METC.

All at no cost to the patient. I propose that Medicare/Medicaid and a portion of NAPA money be used to test this METC concept and in a randomized study using a group of 200 AD patients assigned to traditional (fragmented and inefficient, standard of care) and comparing them to a similarly matched group of 200 AD patients assigned to METC care.

I and my many colleagues and other professional associates and organizations believe quite strongly and will prove a METC is the only place for AD patients to receive comprehensive, compassionate and welcomed care.

My bio is attached for your review.

I welcome the opportunity to speak at the April 17th meeting on behalf of the nearly 5.5 million victims of AD as well as for those who have died from this dreadful 100% fatal disorder.

Thank you for the time to consider my suggestions,

Dr. Joel RossPresident, Memory Enhancement Centers of America Inc. Eatontown, NJhttp://www.memorycenternj.comClinical Associate Professor of Medicine, Mount Sinai Medical CenterNew York, NY

ATTACHMENT: 

Biographical Sketch:

Joel S Ross, M.D., FACP, AGSF, CMD CPI - Dr Ross is a Primary Care Geriatrician and Principal Investigator at Memory Enhancement Centers of America located in Eatontown, Monroe Township and Toms River, New Jersey. Dr. Ross is the Founder and Chief Executive Officer of the Memory Enhancement Centers of America which are state of the art facilities dedicated to improving the quality of lives of those struggling with dementia such as Alzheimer's Disease including the caregivers. By working closely the pharmaceutical industry and the Food and Drug Administration our centers conduct the most state of the art diagnostic and therapeutic intervention using latest medications under development.

Dr. Ross has been Principal Investigator or Sub-investigator on nearly every medications tested for Alzheimer's disease in clinical trials since 1994 including the four FDA approved medications: Aricept/Exelon/Razadyne and Namenda. Dr Ross has conducted over one hundred Alzheimer's Disease research protocols as the Principal Investigator. He has lectured worldwide on Alzheimer's Disease. Dr Ross received his medical degree from Downstate Medical Center, Brooklyn, New York, where he graduate Cum Laude. He completed his internship and residency at Nassau County Medical Center, in East Meadow, New York, where he then became Chief Resident. He is certified in Geriatric Medicine, Internal Medicine and a Certified Physician Investigator by the Association of Clinical Research Professionals. He was the founding member of the geriatric fellowship program at Jersey Shore Medical University and in 2000 was recognized as an "advocate for excellence" as program director-Geriatric Residency at Jersey Shore Medical University. Dr Ross was awarded the "top doctor" in the field of Geriatric Medicine in New Jersey by his peers.

Dr. Ross has an adjunct Associated Professor of Medicine appointment to Mount Sinai Medical School New York, New York since 2002 and is a Clinical Associate Professor of Medicine at UMDNJ-School of Osteopathic Medicine, Stratford, New Jersey since 1996. Dr Ross was appointed to the Drexel University School of Medicine as a Clinical Adjunct Professor of Medicine in 2009. He is on the staff of Monmouth Medical Center, Long Branch, NJ.

Dr Ross received the Humanitarian of Year Award in 2011 from the Alzheimer's Disease Caregivers of Central NJ.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 6, 2012

SUBJECT:  National Plan to Address Alzheimer's Disease

As national public health organizations representing state and local public health practitioners, educators, providers, agency officials, and academicians, we are writing to urge you to ensure that the National Plan to Address Alzheimer's Disease includes public health as a key feature of its structure and implementation.

We applaud the department's effort to utilize the resources of the aging network traditionally drawn upon in dealing with Alzheimer's disease. However, the Plan does not fully engage the public health community at federal, state, and local levels. This risks overlooking the work of the Centers for Disease Control and Prevention (CDC) and specifically the Healthy Aging Program's work. Additionally, states have begun to use their public health networks to confront Alzheimer's as broadly as possible. We believe the most successful implementation of the Plan will be through a population based, public health approach.

Therefore, as your agency develops the final version of the Plan, we urge you to include these critical elements:

  1. A clear statement of Alzheimer's disease as a public health crisis and its burden. Alzheimer's and other dementias are a major public health issue and will increasingly affect the health and well-being of the population until effective interventions are available. In the United States, 5.4 million Americans are living with Alzheimer's disease, costing society an estimated $200 billion this year. In addition, more than 15 million friends and family members provide unpaid care to those with Alzheimer's and other dementias -- care valued at over $210 billion. Public health takes a broad view of health care and seeks to achieve lasting change in the health of entire populations, extending far beyond the medical treatment of individual people. The tools and techniques of public health are expansive in scope and required for successful implementation of the Plan.

  2. Addressing the connection between Alzheimer's and other multiple chronic conditions from a public health perspective. At least three-quarters of people with Alzheimer's and other dementias have one or more other chronic conditions. Yet, the National Plan to Address Alzheimer's Disease does not mention chronic disease or multiple chronic conditions from a public health perspective. Additionally, the Plan does not mention the HHS Initiative on Multiple Chronic Conditions, which includes both individuals with cognitive impairment and their caregivers as important considerations. The role of state and local health departments in coordinating efforts to reduce disabilities, improve functioning, and enhance quality of life for individuals with multiple chronic conditions is vital to the implementation of the Plan. Examples of these programs include Chronic Disease Self-Management and Falls Prevention programs. The importance of recognizing, effectively treating, and minimizing the impact of multiple chronic conditions, including the impact that Alzheimer's has on managing other chronic conditions, could be highlighted in Goals 2 and 4.

  3. Surveillance. The Plan rightly includes Goal 5 to improve data to track progress, but it omits important surveillance and data collection work by the CDC and its state level partners. Work conducted through the Behavioral Risk Factor Surveillance Survey (BRFSS), the world's largest telephone-based health interview survey, now allows states to conduct surveillance on cognitive impairment (CI) and caregiving. These data are essential to understand the burden and impact of Alzheimer's, cognitive impairment, and caregivingat state and local levels -- data that does not currently exist. With similar data in the areas of obesity, diabetes, and arthritis, state and local leaders have been able to make impressive gains in public health programs and policies using BRFSS information. The CDC has been a leader in the development and implementation of these questions, with a majority of states now having used or currently using the CI module. The CDC Healthy Aging Program is working with partners, including the states, to ensure that all 50 states have used the module at least once by 2013. An additional action should be included in Strategy 5.A to support the important surveillance work being conducted by the CDC and its partners.

  4. A rigorous, public health-driven awareness campaign. As written, the Plan either relies on the aging network or does not comment on available public health resources to disseminate and educate the public on early diagnosis, reducing stigma around Alzheimer's, and caregiver services. For example, the CDC Healthy Aging Program has studied diverse groups of older adults to understand communication strategies. State public health officials are skilled in working with aging adults and caregivers, efforts that could inform the Plan. Consideration of the role of public health should be included in Action 3.C.1 and Strategy 4.A.

We appreciate your commitment thus far on the issue of Alzheimer's and on the development of a strong National Plan to Address Alzheimer's Disease. The public health community at the local, state, and federal level is vital to the successful implementation of the Plan and to improving the lives of individuals affected by Alzheimer's disease and their caregivers.

Sincerely,

National Association of Local Boards of HealthThe Association of State and Territorial Directors of NursingThe Center for Technology and AgingFASGI Community Wellness CenterNational Association of Chronic Disease DirectorsNational Association of County and City Health Officials Public Health FoundationPublic Health InstituteSociety for Public Health Education

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 5, 2012

SUBJECT:  Comments

Attached are my comments on the draft HHS plan for the National Alzheimer's Project Act. My contact information is in the attached comments should you have any questions.

Thank you for the opportunity to comment on HHS's draft plan.

Bob Southworth

ATTACHMENT:

COMMENTS ON THE UNDATED DRAFT
NATIONAL PLAN TO ADDRESS ALZHEIMER'S DISEASE

March 31, 2012

INTRODUCTION

The comments presented in this paper are based on my experience as the primary care giver for someone with Alzheimer's dementia and on a book that I read as part of my research on Alzheimer's dementia. The book is titled The Myth of Alzheimer's Disease by Dr. Peter Whitehouse, a leading researcher in Alzheimer's disease for over 30 years.

Eight years ago at age 60, my wife was diagnosed with Alzheimer's Dementia (AD). She lived at home for four and a half years, and has lived in an assisted living facility for the past three years and nine months. She has had three different kinds of brain scans (CAT, MRI, and PET), been evaluated for vitamin B-12 deficiency, been evaluated for "water on the brain", been evaluated at the University of Virginia and John Hopkins University, seen four different neurologists, and has taken both of the medications typical given to people with AD all to no avail. I concluded several years ago that the only thing left was to ensure that she is taken care of. Not only to pay for the care but to participate in it, which I do on a daily basis.

Dr. Whitehouse's book summarizes most of the experiences that I have been through in the last eight years and confirms my conclusion about care for my wife. In my view, everyone who has a loved one diagnosed with AD should read this book. I also believe that Dr. Whitehouse should be considered for inclusion on the Advisory Council established by the National Alzheimer's Project Act (NAPA).

The last part of this paper contains a brief discussion of a grant program through which funding could be provided for the care of people with AD.

GENERAL COMMENT

I agree with the goals in the draft plan. I do not agree, however, with the distribution of funding for the goals. Of the $156 million dollars included in the draft plan, $130 million (83 percent) are allocated for research. Only $26 million are allocated for care. In my view, the funds for research and care should be reversed. At some point, everyone with either AD or another type of dementia is going to need care. That is where most of the federal funds and private funds should be spent.

The final plan should include more details for each of the goals. This includes the office responsible for each strategy and the tentative completion date, funds, and expected outcomes or products for each strategy. Without the details, there is no way to tract the progress on each strategy. The plan also should indicate who will provide oversight for each strategy.

SPECIFIC COMMENTS

1. Care

As mentioned above, I concluded several years ago that the only thing that I can do for my wife is to see that she is taken care of. For this reason, I believe that the first goal on Page 6 of the national plan should address care and that care should be the major theme throughout the plan.

I am not recommending that no research be done on AD. Certainly, research should continue on AD, but not at the funding distribution in the draft plan (i.e., 83 percent of the total amount in the draft plan). In my view, the only way to find a cure for AD is to find a cure for the aging process. This is highly unlikely.

2. Use of the Word "Disease"

In his book, Dr. Whitehouse concludes that Alzheimer's is not disease. It is aging of the brain that can be caused by a number of factors (e.g., stroke, lifestyle, injury, or environmental exposure). Because it is not a disease, there is no cure for AD.

I recommend that the work "disease" no longer be used to describe Alzheimer's dementia . Use of the word stigmatizes the person with AD often resulting in depression, loss of friends, and lack of understanding on what is really occurring. Even though the end result is the same (all persons with AD and other dementias need care), calling the condition what it really is (i.e., dementia) is a better approach for dealing with the condition. In his book, Dr. Whitehouse described an approach whereby the patient and the patient's family are told that the patient has dementia and then given help through a team approach. The team consists of the doctor, a dietitian who helps the patient improve their diet, a physical therapist who works with the patient to increase their physical activity, and a social worker who emphasizes the importance of staying connected both mentally and socially. Use of the team approach is more compassionate then just telling the patient they have Alzheimer's disease, and to take Aricept and come back for another doctor's visit in six months, which is what happened to my wife. Using the word "disease" to describe AD implies there is a cure for AD. This gives the patient and the patient's family false hope because, as previously mentioned, I do not believe there is a cure for AD.

3. Ethnic and Racial Minority Populations

During the eight years that I have had direct involvement with AD, I have never read anything or had any experiences that indicate ethnic and racial minority populations have higher cases of AD than the general population. Unless there is compelling evidence that those populations do experience disproportionate cases of AD, I recommend that this issue not be emphasized in the national plan. In my view, it is more important to spend funds on the care of all people with AD.

4. Assisted Living Facilities

The draft plan fails to recognize that a viable option for people with AD is care in a secure area at an assisted living facility. My wife has been cared for in such facility for three years and nine months, and I expect her to continue to be cared for in an assisted living facility for many more years (she is very healthy except for AD).

An issue related to caring for a person with AD in an assisted living facility is cost. Funds are not available from either Medicare or Medicaid for people who receive care in an assisted living facility. In my view, there is no difference between care of a person with AD in a nursing home and care of such a person in a secure area of an assisted living facility. This disparity needs to be addressed. An example of the cost of care in an assisted living facility is the $75,600 annual fee for my wife plus the cost of incontinence supplies and medications. At present, my long term care insurance pays for part of these costs and I pay the remaining part. When my long term care insurance expires, I will have to pay the total costs.

5. Strategy 2.A

Emergency Medical Technicians (EMTs) and emergency room personnel should be included in the healthcare providers who receive education in AD. In my experience, general physicians also need to be educated about AD. All too often, they just want to prescribe a medication. For example, seroquel often is prescribed for people with AD. Every article that I read on seroquel said that it is not recommended for people with dementia. When I told the doctor that, he said they give it to people with AD anyway.

6. Action 2.A.4

The training discussed in this action should be made available to all direct-care workers and not just workers in nursing homes. In particular, direct-care workers in assisted living facilities and those who provide home care should receive this training.

7. Action 2.B.2

My wife was diagnosed with AD through a process of elimination. In her first visit to a neurologist, she could not pass some simple tests. At later appointments, those same tests were given to her with worst results that the results of the earlier tests. Eventually, the neurologist concluded she had AD. In my view, this process is most likely the only way to diagnose AD.

8. Action 2.E.2

In my experience, the cost of home care for a person with AD is not that much less than the cost of care in an assisted living facility. In addition, home care is much more difficulty for the primary care giver even with the help of direct-care personnel who come to the home. In too many cases, the primary care giver is the one who suffers the most when care is provided in the home.

9. Strategy 2.H

As mentioned above, I have not seen that racial and ethnic minorities are affected disproportionally by AD. All people with AD need care no matter what their race or ethic group. The available resources should be spent on improving care for all AD patients instead of focusing on any racial or ethnic group.

10. Action 3.D.1

It is extremely important that primary care givers understand the legal documents a person with AD should have. These include a general power of attorney, a medical power of attorney, a will, and, where appropriate, a trust. Also, the primary care giver should ensure their name is on the appropriate bank accounts. The importance of these documents should be stressed in the plan.

11. Goal 5

I agree that it is important to track progress on all of the strategies in the plan. As part of that effort, oversight on all strategies and actions must be provided. Without oversight, there is no way to assess progress.

CARE PROPOSAL

Throughout the above comments I have emphasized the importance of care for people with AD. To provide quality care, funding is required. One way to provide that funding is through a grant program.

To help defray the cost of care for people with AD, a grant could be provided to nursing homes, assisted living facilities, home heath care companies, and, potentially, to individuals. Such a program could be administered by the Department of Health and Human Services or funds could be provided to a state and they could administer the program. To receive a grant, specific requirements would have to be met. In addition, oversight would have to provided to ensure that the grants funds are spent properly.

  • Grant funds could be used to.
  • Develop standards of the care of AD patients.
  • Develop design standards for new facilities or modifications to existing facilities where care for people with AD is provided.
  • Construct new facilities or modifications to existing facilities where care for people with AD is provided.
  • Train direct-care workers
  • Provide funds to increase the pay of direct-care workers. . " Provide funds to defray the costs that family members have to pay for care.
  • Provide funds for the oversight of the grant requirements and to ensure quality care is provided.

To receive a grant, an entity would have to submit an application to the agency who administers the grant program. The application would have to contain detailed information about on the facility and the care they provide.

Thank you for the opportunity to submit the above comments. Questions on my comments should be addressed to:

Robert M. Southworth
Marshall, Virginia

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 2, 2012

SUBJECT:  FasterCures' comments on the National Plan to Address Alzheimer's Disease

Thank you for the opportunity to comment on the draft National Plan to Address Alzheimer's Disease. Attached are FasterCures'comments for your consideration. Please confirm that you have received this submission.

Please let me know if you have any questions.

Sincerely,

Cecilia O. ArradazaDirector, Communications & MarketingFasterCuresWashington, DChttp://www.fastercures.org

ATTACHMENT:

Thank you for the opportunity to comment on the draft National Plan to Address Alzheimer's Disease. We at FasterCures have been observing with great interest the development of this agenda for some time and were significantly engaged in providing feedback on its precursor, the plan of the Alzheimer's Study Group.

FasterCures' mission is to improve the medical research system irrespective of disease area, to speed up the time it takes to get important new medicines from discovery to patients. As a result, our concerns often relate to the importance of tackling problems with the research process as well as the science. While we might wish that the language in the Plan were a little bit stronger and more direct on this score, we are pleased that many of the process issues we care about and raised with the Alzheimer's Study Group are reflected in it, including:

  • Promoting a more outcomes-oriented approach to research, particularly translation and drug development. (The Plan does not, however, offer specific ideas about the changes necessary for this to happen -- e.g. how might this impact the traditional investigator-initiated model of grantmaking by the NIH?)
  • Mapping the landscape of current Alzheimer's disease (AD) research, not just within federal agencies but by all players;
  • Identifying priority areas for research investment;
  • Encouraging and facilitating collaboration among sectors; and
  • Building patient awareness of and participation in research.

There are other issues we see as critical to progress toward new treatments that we do not believe are adequately reflected in the Plan, including:

  • Creating shared resources available to AD researchers. There are occasional references to this subject in a number of places in the plan, but we believe it should be an important focus. Any inventory of AD research investments should explicitly include resources such as databases, electronic health records collections, and tissue banks that already exist and should be shared, and any effort to identify research priorities should explicitly include new shared resources that need to be created.
  • Engaging regulators in strategizing about how to accelerate approval. Again, the plan does mention FDA on occasion, but in our view there is not enough emphasis on the importance of this. Approval of new therapies can be significantly accelerated if regulators can be involved in discussions about clinical trials at early stages, so that time is not lost at the end of the process having to go back to the drawing board. The Foundation for the NIH's Biomarker's Consortium is an excellent example of the utility of involving FDA at the earliest stages of research.
  • Making sure that all existing federal efforts (not just those already specifically targeted at AD) are applying themselves to the challenges faced by AD. For example, the new National Center for Advancing Translational Sciences (NCATS) at NIH, the FDA's focus on improving regulatory science at the agency, and the efforts of the Office of the National Coordinator for Health IT at HHS to accelerate the adoption of electronic health records and information exchange. These are significant efforts by the federal government that will have an impact on the research environment and should reflect the priority the federal government is placing on AD.
  • Examining the pipeline of clinical researchers in AD. There is appropriate emphasis in the Plan on training of providers and caregivers, but not on the future research corps. AD already suffers from a shortage of clinicians trained in the complex care of elderly patients, and the shortage of clinical researchers in this area is probably even more dire. Attention should be paid to the recruitment and training of researchers capable of working in this field.

Thank you once again for the opportunity to comment on what we believe is a strong draft National Plan to Address Alzheimer's Disease. We are happy to discuss our views further with HHS or the Advisory Council on Alzheimer's Research, Care and Services at any time.

Sincerely,
Margaret Anderson
Executive Director
FasterCures
Washington, DC
http://www.fastercures.org

FasterCures is a nonprofit, nonpartisan center of the Milken Institute dedicated to improving the medical research system so that we can speed up the time it takes to get important new medicines from discovery to patients. Through our programmatic activities, we work with many patient advocacy, venture philanthropy, and medical research organizations across the disease spectrum to improve the effectiveness and efficiency of the medical research enterprise, and transform the way we pursue, fund, and conduct medical research.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 2, 2012

SUBJECT:  Comments from an Alzheimer's Caregiver and Research Scientist

I am very impressed by the Draft National Plan to Address Alzheimer's Disease (and Related Dementias). It is well written and quite comprehensive from my perspective. But I do have some concerns and suggestions.

My wife was diagnosed with Alzheimer's Disease in February 2010. I am her primary caregiver and health advocate. Fortunately, long-term care insurance has afforded us the opportunity to have two very good caregivers thus providing me the ability to work part time as a research scientist at CNA, a Federally Funded Research and Development Center (FFRDC). My wife and I have experienced both the classical, traditional clinical medical approach and, more recently, the alternative complementary medical approach. In addition, I am a member of two caregiver support groups: one offered by a Ministry to the Aging at my church, and the second offered by the Alzheimer's Family Day Center of Fairfax, VA.

From this base of experience and education, I offer my observations and suggestions:

  1. The plan seems to lack a sense of urgency. While the goal "to prevent and effectively treat AD by 2025" is laudable, the selection of 2025 along with the general tone of the plan does not convey the urgency I believe is necessary. Selecting either 2020, because it's sooner and a nice round number, or 2022, as it comes 10-years after the release of the National Plan and is akin to President Kennedy's announcement in 1960 of manned flight to the moon by the end of that decade, would be better. Both years signal a message of boldness and ambition more so than does 2025. I believe caregivers and family members would be encouraged by such ambitious goals.
  2. The plan appears to display certain biases that may restrict the search for alternative solutions.
    1. First, there seems to be an emphasis on searching for "pharmacological" solutions. Certainly, the plan recognizes other approaches, e.g. "While research on AD has made steady progress, there are no pharmacological or other interventions to definitively prevent, treat, or cure the disease" and "non-pharmacological management of physical, cognitive, and behavioral symptoms." But it does not clearly state what such "other, non-pharmacological" approaches might be. This suggests to me a bias toward pharmaceutical solutions and therefore a favoring of the pharmaceutical industry, which seems to be more motivated by profits than solutions. I encourage that these other approaches be specified. The effectiveness of public health communications necessitates clear, plain-English language.
    2. There also seems to be a bias toward the time-consuming approach of clinical trials. The plan clearly recognizes the need to the pharmaceutical bias, I think.
    3. The plan rightly includes "related dementias" in defining Alzheimer's Disease. But it identifies only Lewy body, frontotemporal, and vascular dementias as examples. Unless recognized but not stated by the drafters, I suggest including other neurological diseases such as Parkinson's, Huntington's, ALS/Lew Gehrig, and MS. Such an expansion might introduce synergies and efficiencies and potentially a considerably more significant effect.

Admittedly, my own personal research into AD is limited. I have only recently begun to dig more deeply into the subject. Much of my motivation comes from frustration over the silence and apparent helplessness of the traditional medical community toward my wife's disease. I have recently read two books that have strongly influenced me: "Alzheimer's Disease---What If There Was a Cure"---The Story of Ketones" by Dr. Mary Newport, and "Stop Alzheimer's Now! How to Prevent and Reverse Dementia, Parkinson's, ALS, Multiple Sclerosis and Other Neurodegenerative Disorders" by Dr. Bruce Fife.These books introduced me to the "Type 3 Diabetes" aspect of AD, which I find most intriguing and compelling. If what they say is true about insulin-deficiency and insulin-resistance in the brain and the resultant "starvation" of neurons, and that nutritional substitutes in the form of ketone bodies from medium-chain triglyceride fatty acids already exist on the shelves of health food stores in the forms of coconut oil and MCT oils, THIS IS HUGE. Considering that I might be "starving" my wife's neurons by not providing this source of fuels (already used by neonatologists, according to Dr. Newport and in pediatrics, according to my RN daughter), ignoring this evidence is morally unconscionable to me. Also if true, this nutritional approach could be a "silver bullet" of vast consequence.

Thank you for soliciting comments from the public in reaction to the draft plan. I apologize for missing the March 30 deadline. Such tardiness has become commonplace for me as an Alzheimer's caregiver and health advocate. And thank you for your contribution to this important work.

With regards.

Gregory N. Suess, Ph.D.Annandale, VA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 1, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

Although the official comment period has closed for the NAPA draft plan, I'm writing today to urge you to go bolder with the final plan to be released by HHS later this month.

Alzheimer's is a cruel disease. It slowly steals one's intellect, ability to communicate, independence, and dignity, even control over basic bodily functions like eating and caring for personal hygiene. It also places an overwhelming burden on caregivers -- emotionally, physically, and financially.

The commitment to a 2025 deadline in the draft NAPA plan represents a major step forward in the fight against Alzheimer's. I am pleased that the plan recognizes the need for increasing enrollment in clinical trials, compressing the drug development process, accelerating targeted research, and better coordinating activities with other countries.

However, I am one of many concerned Alzheimer's advocates who believe that this first draft fails to present a strategy aggressive enough to achieve the goal of preventing and treating Alzheimer's within 13 years. It lacks specificity in terms of timelines and deadlines, provides no path to providing significantly greater resources, and does not hold a single high-level office or individual accountable for the overall plan.

I hope that HHS will address these issues so that the next version of the plan will be bolder.

With the number of Alzheimer's patients expected to triple in the coming decades, we must embrace a plan that eschews a "business-as-usual" approach and tackles Alzheimer's with the urgency and aggressiveness it requires. If not, we stand to lose millions more lives -- and trillions of dollars -- to this disease.

Thank you.

Available as separate links:
List of the 8,267 People Who Sent this Form Letter in April 2012We need a bold plan to stop Alzheimer's!

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 1, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

I am a retired RN. However, I now provide non-medical home care to individuals with Dementia and Alzheimer's Disease at a reasonable cost.

I also serve as their healthcare advocate, assisting the family to find good medical care for their loved one.

I think the world of you. Thank-you for attending to the needs of the aging population.

I am 66 years old. My client is also Sixty-Six, and requires constant care and attention. She is also a Registered Nurse. She responds so well to loving care. I am so fortunate to have these skills.

Your Truly,

Georgette VianniOrinda, CA

[Return to Public Comment Index or This Year's Table of Contents]

MARCH 2012 COMMENTS

DATE:  March 31, 2012

SUBJECT:  NAPA Strategic Plan Input

This is an excellent document and we applaud your initiative and efforts to make this comprehensive and inclusive. It is with that objective in mind that we make the following observations:

Under Action 1.B.5 you note the importance of clinical trials on "Pharmacologic interventions." In B.6. you mention the importance of these for "lifestyle interventions."However, another key area is dietary or nutritional interventions. While this is often assumed by some under lifestyle, it is not always understood as such, especially by the public, and in light of recent research seems significant enough to warrant it's own mention. At least in terms of prevention, diet and nutrition is arguably at least as important, if not much more so, than any pharmaceutical intervention yet devised. (see evidence below). The rationale for it not being assumed under lifestyle is as follows:

Dictionary.com defines lifestyle as: the habits, attitudes, tastes, moral standards, economic level, etc., that together constitute the mode of living of an individual or group.

While tastes may imply dietary choices, that's not necessarily so, as they could imply one's taste for clothing, cars, companionship, etc., which do not equate to food or nutritional choices.

Dictionary.com provides this example of it's use in a sentence: Much of what we're told about diet, lifestyle and disease is based on epidemiologic studies.

Here you see they clearly do not consider "diet" to be synonymous with "lifestyle."

Perhaps this oversight, or confounding of the variables, is due to the heavily biased and fretfully flawed FDA tendency to lump anything therapeutic under the heading of pharmaceutical or "drug." That however is confusing and misleading to the public, and we feel a disservice to the thousands of great scientists who have worked and are working with nutrition and nutritional formulas -- many of whom your agencies have funded, who in the past have made better inroads into preventing or arresting AD symptoms than the pharmaceutical industry. In fact, Dr. William Grant in his landmark epidemiological study of "what causes Alzheimer's," including studies from 11 different countries, argued strongly that Alzheimer's disease was "primarily caused" not by genetics, which you pay great attention to, but by unhealthy dietary choices.[1] Moreover, the experimental peer reviewed studies, also show that findings in the field of nutrition have been more promising to date,[2], [3], [4], [5], [6], [7], [8], [9] at least for the prevention of Alzheimer's than the much more costly pharmaceutical trials. It is logically inconsistent therefore to emphasize pharmaceutical trials in the context of prevention and neglect to even use the words diet, nutrition or exercise in this proposal.

So, wouldn't it be appropriate in light of the above noted research, to include here "nutritional" or "dietary" in para 1.B.6 before "lifestyle" as the dictionary has above. In other words to note "the importance of clinical trials on nutritional or dietary interventions." And encourage the FDA to expedite the approval, implementation and public awareness of positive outcomes in these areas, instead of dragging their feet as they historically have done, in this area. Or worse yet proposing a moratorium on new formulations, as they recently have proposed. (If you would like evidence of this let me know.)

We recommend, as you discuss prevention and early intervention, that you at least make mention of the fact that Alzheimer's is seen by many good researchers as a condition of elderly malnutrition,[10], [11] and there is a great deal of good research, such as that conducted by Dr. Suzanne Craft at the University of Washington, which the Alzheimer's 'Association highlighted in their 2010 ICAD conference and in their HBO series, which suggests that healthy foods and the nutrients they contain, may be among the most important factors to consider in our efforts to prevent Alzheimer's. In fact in that video she notes that by following some simple dietary guidelines people "could at the least delay the onset of Alzheimer's" and by doing so "reduce the number of Alzheimer's cases nearly in half" -- thus enabling you to achieve your objective.

Of course we're just using Dr. Craft as an example. In fact that Assoc and NIH have sponsored many good studies which suggest that various nutrients, like folic acid, grape seed and other antioxidants, key amino acids, etc can make a major dent in preventing Alzheimer's. Remember the famous Cache Senior memory study where they found that high consumption of antioxidants -- C and E "reduced AD prevalence by about 78% (adjusted odds ratio, 0.22; 95% confidence interval [CI], 0.05 - 0.60) and incidence by about 64% (adjusted hazard ratio, 0.36; 95% CI, 0.09 - 0.99)."[12] Then there were the Chicago fish studies5 and the MIDAS study presented in the 2009 ICAD conference which showed fish and DHA's potential to reduce risk by more than half. And we could go on -- see the references noted above.

You get our point. If you are going to specify pharmaceutical and lifestyle trials, we feel you should also note dietary or nutritional trials.

p.s. please reply so that I know you received this.

David R. Larsen, MFHDIndependent Alzheimer's Researcher and National Post Graduate Instructor for Health Education NetworkWriting for Innovations in Health Associates

References

  1. Grant, W B, (1997) Dietary Links to Alzheimer's Disease. Alzheimer's Disease Review 2, 42-55.
  2. Karin Yurko-Mauroa, McCarthya, D., Romb, D., Mary Stedmand, on behalf of the MIDAS Investigators, et al. Beneficial effects of docosahexaenoic acid on cognition in age-related cognitive decline. (Nov 2010) Alzheimer's & Dementia: The Journal of the Alzheimer's Association, Vol 6, Issue 6, Pp 456-464
  3. Ellinson, M, Thomas, J, Patterson, A.. A critical evaluation of the relationship between serum vitamin B12, folate and total homocysteine with cognitive impairment in the elderly. J Hum Nutr Diet. 2004;17:371-383.
  4. Smith, AD, Smith, SM, de Jager, CA, Whitbread, P, Johnston, C, et al. 2010 Homocysteine-Lowering by B Vitamins Slows the Rate of Accelerated Brain Atrophy in Mild Cognitive Impairment: A Randomized Controlled Trial. PLoS ONE 5(9): e12244. doi:10.1371/journal.pone.0012244
  5. Scarmeas, Nicholas Mediterranean Diet, Alzheimer's Disease, and Vascular Mediation. Archives of Neurology, vol 63, Dec 2006, 1709-1717.
  6. Morris MC, Evans DA, Bienias JL, et al. Consumption of fish and omega-3 fatty acids and risk of incident Alzheimer disease. Arch Neurol. 2003 Jul;60(7):940-6. Morris MC, Evans DA, Tangney CC, Bienias JL, Wilson RS. Fish consumption and cognitive decline with age in a large community study. Arch Neurol.2005 Dec;62(12):1849-53.
  7. Zandi, PP, Anthony, JC, Khachaturian, AS, et al. Reduced Risk of Alzheimer Disease in Users of Antioxidant Vitamin Supplements. Arch Neurol. 2004;61:82-88.
  8. Chan A, Paskavitz J, Remington R, Rasmussen S, and Shea TB, Efficacy of a vitamin/nutriceutical formulation for early-stage Alzheimer's disease: a 1-year, open-label pilot study with an 16-month caregiver extension. Am J Alzheimers Dis Other Demen, 2008. 23(6): p. 571-85.
  9. Karp, Anita; et al. "Mental Physical and Social Components in Common Leisure Activities in Old Age in Relation to Dementia: Findings from the Kungsholmen Project." Presented at the Alzheimer's Association 9th International Conference on Alzheimer's Disease and Related Disorders, Philadelphia, Penn., July 17 - 22, 2004. Abstract published in Neurobiology of Aging, July 2004, Vol. 25, S2: p. S313.
  10. Shatenstein B, Kergoat MJ, Reid I (2007) Poor nutrient intakes during 1-year follow-up with community-dwelling older adults with early-stage Alzheimer dementia compared to cognitively intact matched controls. J Am Diet Assoc 107, 2091-2019.
  11. Shea, TB, Remington, R, (2012) Nutrition and Dementia: are we asking the right questions? J Alzheimer's Disease, in press. See also David Perlmutter, M.D. (2004) The Better Brain Book, Riverhead books; and Mark Hyman, M.D. (2009) The Ultra Mind Solution.
  12. Barclay, L (MD) Vitamins E, C May Reduce Risk of Alzheimer's Disease, Medscape Medical News 2004. Jan. 20, 2004 commenting on the article that appeared in the Archives of Neurology. 2004;61:82-88.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 31, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

My dad died with dementia. It's not a pleasant thought to look forward to!

Thank you.

Elizabeth HavilandEllensburg, WA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 31, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

Unless you have cared for a family member throughout their demise due to Alzheimer's, you cannot possibly imagine the horror and sadness this disease inflicts upon a family. It took eleven years for our beloved mother to finally succumb to this wretched disease. It completely destroyed our father, as the primary caregiver, depleted ALL of our parents' savings, and left our family penniless and in a shambles. Our dear father's health was so comprised as her caregiver, that he is now in a nursing home, dying. I cannot stop crying. We have not only lost both parents, but also all hope of any chance of happiness for their children and grandchildren. I hope you do not have to experience this first hand before you understand how devastating Alzheimer's truly is. Turning your back on an opportunity to stop this dreadful disease will surely prove to be a failure to act to save someone in your OWN family from this tragedy. Alzheimer's is no respecter of persons. Please help.

Sharon RussellOakland, CA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 31, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

I had worked in nursing homes as an Activities Assistant for years, and saw the debillitating effects of the disease on the people who had the disease, as well as their loved ones. I also have an aunt with the disease, and know of the toll this is taking on her children. We need the HHS to take action to find a way to prevent this disease and cure it.

There needs to be more research done on Alzheimer's Disease, so that this disease may be combatted.

Respectfully yours,

Ellen HelySt. Louis, MO

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

Dr. Oz backs the research behind this existing drug to treatAlzheimers. This article explains it better than I can. My mother was recently diagnosed and it is a painful disease to watch. The mental decline in someone so vibrant and otherwise very healthy is devastating. Please support an aggressive pursuit of this new promising treatment for Alzheimers.

http://www.doctoroz.com/blog/mike-roizen-md/alzheimer-s-breakthrough-shows-promise

Thank you very much.

Dr. Jessica L. MadsenCincinnati, OH

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

My father died a slow death from Altzheimer's, essentially losing his life before it actually killed him. In the process, it drained my mother's life to the point where she neglected her own health to devote 100% of her time to his care, and she died soon after. It drained me and my brother's as well, and now we live in fear of developing this disease ourselves.

The current NAPA plan, though well intentioned, is as effective as a Get Well Soon card. Please work to make the next version of the plan effective by putting some muscle behind it. It is hard to believe even in the current partisan environment that it would not receive bi-partisan support.

Thank you.

NicholasKourosHarvard, MA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

My mother once spoke four languages, got her master's from Tufts School of International Law and Diplomacy and had one of the sharpest wits ever.

She's 89 now, and think she thinks I'm an overly friendly nursing home staffer who kisses her and tells her how much Istilllove her. She has disappeared so slowly, I'm not even sure when I said goodbye to the mother I once knew.

I am saddened and scared. I am scared now that I, too, will suffer this fate. And that my children will one day wonder where I went and who is this apparition is who looks like me but seems lost at sea.

I am heartened by the commitment to a 2025 deadline in the draft NAPA plan to fight Alzheimer's. The clinical trial are crucial and I am strong believer in targeted research and coordinating resources. We cannot afford to waste resources!

But I fear good intentions without benchmakrs will mean wasted time, effort and money. We need timelines, deadlines and accountability.

I hope that HHS will tackle this issue in the coming months the only way to address this disease -- with courage, coordination and bold action.

Sincerely,

Karen LoweGlendale, CA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

Alzheimer's is a cruel disease. It slowly steals one's intellect, ability to communicate, independence, and dignity, even control over basic bodily functions like eating and caring for personal hygiene. It also places an overwhelming burden on caregivers -- emotionally, physically, and financially.

Sadly it seems the Republican party is inflicted with this horrible disease. If for no other reason, do it for the GOP!

Michael BergSan Francisco, CA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

I feel sure you have been exposed to Alzheimers there are very few people now that haven't been affected by it, so there is no need to explain what it does, all we need is help.

Once the damage is done it can't be reversed, so please encourage urgent research to stop Alzheimers.

Sue SmithCanton, NC

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

For the past 3 years I've watched my partner of 48 year decline into the darkness of Alzheimer's disease. His physical condition is to the point that I must place him in a nursing home. This is by far the most difficult decision I have ever made. I want a time to come that no one must make such a decision because of Alzheimer's disease.

I am pleased that your draft plan recognizes the need for increasing enrollment in clinical trials, compressing the drug development process, accelerating targeted research, and better coordinating activities with other countries.

From what I can tell there needs to be more resources promised and some more explanation of the steps to be taken.

I hope that HHS will address these issues in the coming months so that the next version of the plan will be bolder. Our nation cannot afford the costs of inaction.

Thank you.

Alan BakerAlpine, TX

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DATE:  March 30, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

Alzheimer's is a traumatic way to end one's sacred time here on this planet. The disease is paralleled with strong (negative) personality shifts and loss of memory related cognitive abilities in all types of memory. Further fueling this disease is the social treatment of it. Family members interact cautiously, and the person suffering Alzheimer's disease often witnesses their social structures disappear. My grandma, who suffers Alzheimer's, has been fighting with my grandfather for two years now, convinced that he is slyly stealing all of her things. My grandfather cannot even be in the same room alone with her anymore without being emotionally trampled. This is not her, and this is not the person my whole family grew up with. This has happened with both my grandmothers.

This needs to be dealt with, and it can. Research has identified many of the neural and microbiological mechanisms behind this neurodegenerative disease. If we can learn to cure this, that would be amazing. However, more funding can allow us to really treat it, which involves both traditional AND preventative medicine. Education of our public is highly important. Teaching appropriate and healthy behaviors (nutrition, physical AND mental exercise, having social relationships, etc.) which are highly linked to prevention are important. Funding of projects both in research and education is of extreme importance, especially given the future financial costs all of us will be covering for these individuals.

It is our national duty to fix this. Please take the necessary steps forward! Thank you for your time.

Glenn CarsonCandidate for B.A. in Intensive Psychology and B.S. in Neuroscience at UC Santa CruzSanta Cruz, CA

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DATE:  March 30, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

The devastation caused by Alzheimer's disease to so many families is well known. Please see to it that the resources needed to really push this plan forward are made available. We're depending on you.

Thank you.

Toby HorowitzBrooklyn, NY

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DATE:  March 30, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

My Mother died of Alzheimer's, it was a long, cruel and horrible spiral to death....so sad.

Thank you.

Dale NovakSaginaw, MI

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DATE:  March 30, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

Alzheimer's is a cruel disease. I saw my Grandma go from an active, sweet person to a woman who thought the person reflected in her mirror was another woman. I saw my Grandpa's heart break as the person he planned to spend the rest of his life with dwindled away to a woman who thought he was her father.

It's time for something to be done to eradicate this disease. It is a cruel disease that robs a person of their dignity and leaves the family feeling angry and cheated.

Please do what is needed to stop this disease.

Thank you.

Tami SuttonAustin, TX

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DATE:  March 30, 2012

SUBJECT:  Comments on Draft National Plan to Address Alzheimer's Disease

Having been associated with the Alzheimer Society of Washington for thirty years I have seen many changes in the recognition, support and care for person affected by dementia. The scope of the Draft National Plan makes it clear that leaders in the nation have recognized the need to bring together governmental and private agencies to develop a plan. I applaud the work that has been done and have only a few comments:

  1. Even though the prevalence of Alzheimer's disease and related dementias (AD) increases with age it is not an "aging" issue. AD is a chronic disease and designating many of the programs that serve people affected by dementia to, or through, the National Institutes on Aging or through Older Americans Act programs shifts a chronic health problem to an aging issue. The National Institutes of Health (NIH) could be assigned to oversee all Chronic Disease and Disability programs – then AD supportive services could fall under the auspices of NIH. This action would make AD more likely to be seen as a chronic disease and should elicit preventive health-related responses, even though there is not currently a cure for AD.
  2. While this report addresses reducing stigma and bringing better understanding to the needs of people with dementia, it still reflects the medical bias that can occur in so much of health care. In the Draft National Plan, Action 2.A.4: Strengthen the direct-care workforce it says, "The training will be released in Spring 2012, and will be available to all nursing homes to share with their staff." I recommend the language be changed to say,"...will be available to all "organizations providing dementia care." My reason for expanding the beneficiaries of the training is that many organizations in the community provide care to people with dementia. Offering training to all organizations that provide supportive services, daycare and home care, and less medically-oriented care, and not limiting the training to nursing homes, can help the person with dementia remain in the community longer -- and reduce healthcare costs.
  3. Funds designated for research should specifically include Social Innovations. As I indicated in the paragraph above, there are many organizations that are providing support to people affected by dementia.

Our organization has sponsored two such innovative social programs:

  1. The Early Memory Loss (EML) program, conducted at least yearly, is for the person with dementia and his/her care partner(s). The initial program lasts ten weeks. Participants gather, then are divided. People with dementia are in one group; the family care partners are in another. The same topic is addressed in each group, but in a way that is appropriate for the person with dementia or the family members. Upon completion of the weekly EML program the group "graduates" into a follow-up support group that is made up of attendees from previous classes and meets monthly.
  2. The second program is called "Staying Connected" and is for people with early memory loss. Participants attend a small (up to 8 people) 3-hour weekly group that provides physical, social and mental stimulation. Over the past three years many of the participants have retained their mental capacity and have continued to benefit from the program. Their care partners have benefitted, too, by having this supportive community program.

Research into Social Innovations could help provide credibility and more support for these kinds of programs.

Thank you for asking for comments from the public.

Josselyn WinslowAlzheimer Society of Washington Board MemberBellingham, WA

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DATE:  March 30, 2012

SUBJECT:  NASUAD Comments on the Draft National Plan to Address Alzheimer's Disease

The National Association of States United for Aging and Disabilities (NASUAD) appreciates the opportunity to comment on the Department of Health and Human Services (HHS) Draft National Plan to Address Alzheimer's Disease, as published on February 22, 2012.

NASUAD represents the nation's 56 state and territorial agencies on aging and disabilities. As part of the National Aging Network, each of our members oversees the implementation of the Older Americans Act (OAA), through funds awarded by the Administration on Aging (AoA). Additionally, many member-states also serve as the operating agency for Medicaid home and community based services (HCBS) waivers that serve older adults, and in some cases, individuals with disabilities. The Association's principal mission is to design, improve, and sustain state systems delivering home and community based services and supports for people who are older or have a disability, and their caregivers.

The enactment of the National Alzheimer's Project Act (NAPA) has created a long-overdue opportunity to focus the nation's attention on Alzheimer's disease, and the Association applauds the Administration's recognition of both the vital need to address the many challenges facing people with the disease, their families, and caregivers; and the urgency with which this must be done. Additionally, we find the draft plan's guiding principles, which seek to optimize existing resources and improve and coordinate ongoing activities, to support public-private partnerships, and to transform the way we approach Alzheimer's disease, to be an appropriate reflection of the ambitious, yet attainable, goals embodied by the plan itself.

Guided by a vision of a nation free of Alzheimer's disease, the Draft National Plan to Address Alzheimer's Disease outlines goals, strategies and actions that directly affect the Aging Network. Consequently, NASAUD respectfully submits for your consideration the following comments and recommendations.

Action 2.A.5: Strengthen state aging workforces.NASUAD applauds the Department's efforts to strengthen state aging workforces that are "capable and culturally competent" through AoA. While implementing this action, it is important that efforts to improve state strategies do not further burden states' abilities to apply for and utilize funds from AoA. States should maintain flexibility to implement strategies that address the unique needs of the state populations through their state infrastructures.

Action 2.A.6: Support state and local Alzheimer's strategies. NASUAD applauds states for recognizing the need to develop comprehensive plans to address Alzheimer's disease, but we are concerned that these plans are being conceptualized and developed without involvement from the Aging Network. State agencies on aging and disabilities play a critical role in the oversight and delivery of services that are designed to support older adults, including those with Alzheimer's disease, in their homes and communities. For these reasons, NASUAD recommends that state agencies on aging and disabilities, and other relevant stakeholders, should be involved at all stages of Alzheimer's state plan development.

Additionally, in accordance with the Older Americans Act, state agencies must develop a State Plan on Aging, which is envisioned by AoA as a comprehensive plan document that articulates the direction in which state long-term care efforts are moving, key strategies to address the strong desires of the rapidly growing new generation of long-term care consumers to be served in their homes and communities, and how the state will address the challenges of America's budgetary constraints and competing priorities in today's society. Given these existing requirements, State Plans on Aging may be the most appropriate place for states to describe their short and long-term strategies for addressing Alzheimer's disease. The integration of Alzheimer's state plans into State Plans on Aging would align with the need for a holistic approach to combatting the disease itself, as well as AoA's intent that State Plans serve as valuable tools for planning and tracking all of the state's efforts on behalf of older adults.

Action 2.B.1: Link the public to diagnostic and treatment services. NASUAD supports the Department's approach of expanding linkages between existing disease support and community information centers supported by AoA and the National Institutes of Health (NIH). In order to successfully connect members of the public with the necessary services and supports, NASUAD recommends that HHS also examine the capacity of these existing structures, particularly those within the Aging Network, such as ADRCs, I&R/A, and SHIPs, to ensure that these resources are adequately funded to meet the needs of this growing population.

Action 2.C.2: Enhance assistance for people with AD and their caregivers to prepare for care needs. NASUAD recommends that any strategy to strengthen the Aging Network's capacity to provide families and people with AD access to appropriate services and specialized long-term care planning should be implemented in such a manner that does not overly burden these existing systems. Rather, any approach should provide the Aging Network with the necessary resources to meet these unique needs and to develop innovative practices for doing so. In addition, HHS should compile an inventory of tools to assist caregivers from federal and state agencies, as well as patient advocacy organizations, and make these tools readily available within the next year for distribution through the Aging Network.

Action 2.F.2: Implement and evaluate new care models to support effective care transitions for people with Alzheimer's disease.NASAUD supports the Department's recognition of the potential for the ADRC Evidence Based Care Transitions program to implement evidence-based care transition models that meaningfully engage older adults, individuals with disabilities, and their informal caregivers. Throughout this evaluation process, NASUAD recommends that HHS consider the impact that additional resources could have on the ability of ADRCs to build their capacity and successfully support effective care transitions for people with Alzheimer's disease.

Action 2.F.3: Develop an AD-specific toolkit on care transitions. NASUAD recommends that this toolkit be developed in consultation with state agencies on aging and disabilities, and be available for distribution throughout the Aging Network within the year.

Action 2.H.2: Identify steps to ensure access to long-term services and supports for younger people with AD.NASUAD supports the proposed collaboration between the Administration on Aging (AoA), the Office on Disability, and Administration on Developmental Disabilities (ADD) to address access to long-term services and supports across the lifespan, and believes these agencies should be consulted as stakeholders throughout the plan's development and implementation.

Action 3.A.1: Identify culturally sensitive materials and training.NASUAD supports HHS efforts to give caregivers the information and training that they need in a culturally sensitive manner, and recommends that plans to do so include input from the Aging Network. To facilitate the identification and distribution of culturally-appropriate materials to caregivers, NASUAD recommends that within the year, HHS should convene an expert panel to develop an inventory of culturally-sensitive materials and trainings that are currently available, and identify gaps that should be filled by government and patient advocacy organizations.

Action 3.A.2: Distribute materials to caregivers.NASUAD recommends that HHS utilize its current inventory of federal agency programs and materials and make these resources readily available to all caregivers through the Aging Network.

Action 3.B.2: Identify and disseminate best practices for caregiver assessment and referral through the long-term services and supports system. NASUAD recommends that HHS distribute the identified best practices in a manner that recognizes the variance in long-term services and supports systems across, and within, states. Since what may be a promising practice in one state may be ineffective in another, NASUAD encourages HHS to recognize the importance of state flexibility in meeting the unique needs of individuals within each state.

Action 3.B.3: Review the state of the art of evidence-based interventions that can be delivered by community-based organizations. NASUAD recommends that this action include identifying interventions that are successful in improving the health and wellness of people with Alzheimer's disease and other dementias. Many successful evidence based programs have been proven to work for both people with Alzheimer's and other dementias, so it is important that the evaluation of such programs not be limited to only Alzheimer's specific interventions.

Action 3.B.4: Develop and disseminate evidence-based interventions for people with Alzheimer's disease and their caregivers.To successfully implement the strategies defined in Action 3.B.3, NASUAD recommends that HHS quickly work to ensure that more people with Alzheimer's disease, and their families, have access to successful evidence based intervention programs. There are existing programs that NASUAD recommends HHS should expand as part of this effort:

  • Older Americans Act -- Reauthorization of this legislation would ensure grants to states for community planning and social services, research and development projects, and personnel training in the field of aging. Funding should also be increased for the programs funded by the Act.
  • Lifespan Respite Care Act -- Reauthorization of this legislation would authorize grants to statewide respite care service providers. Grants can be used for various purposes, including training and recruiting workers and volunteers, training family caregivers and providing information about available services. Additional funds should be allocated to the Act.
  • National Family Caregivers Support Program -- At a minimum, funding levels should meet the recommended levels of the President's FY12 budget ($192 million). This program provides grants to states and territories to pay for a range of programs assisting family and informal caregivers to care for loved ones at home and for as long as possible.

Action 3.B.5: Provide effective caregiver interventions through AD-capable systems.As HHS works to connect caregivers with appropriate supportive services, NASUAD recommends that HHS build upon the existing capacity of ADRCs to serve as "No Wrong Doors" through which individuals, their families, and caregivers can access available services and programs.

Action 3.B.6: Share lessons learned through VA caregiver support strategies with federal partners. NASUAD recognizes and applauds the successes of the VA in providing home and community based care, and realizes the importance of sharing lessons learned from the implementation of these programs across agency and state lines. NASUAD recommends that the quarterly meetings identified in this action step commence as soon as possible, so that important information is gathered and shared not only among federal programs, but also throughout the Aging Network.

Action 3.C.1: Examine awareness of long-term care needs and barriers to planning for these needs. Once HHS completes this barrier-identification process, NASUAD recommends that HHS work with federal stakeholders, including CMS and AoA, as well as state and local agencies on aging, to develop and implement solutions to the identified obstacles.

Action 3.C.2: Expand long-term care awareness efforts.In looking to expand public outreach and awareness about Alzheimer's disease and the importance of long-term care planning, NASUAD recommends that HHS build upon the successes of the Aging Network in providing outreach and education, such those achieved by ADRCs, I&R/A, SHIPs, and state and local agencies.

Strategy 3.D: Maintain the dignity, safety and rights of people with Alzheimer's disease.To successfully implement this strategy, NASUAD recommends that HHS consider implementing the Elder Justice Act (EJA), as established by the Affordable Care Act (ACA). The EJA fully realizes the need to protect our most vulnerable citizens from financial exploitation, as well as from physical and emotional abuse and neglect, and it creates structures and programs for doing so. Though the EJA was signed into law in 2010, it has yet to receive any federal dollars. Without a strong financial commitment to address the growing problem of abuse and neglect among older adults, it will be impossible to fully secure the dignity, safety, and rights of people with Alzheimer's disease. NASUAD recommends that HHS work with Congress to fully fund the Elder Justice Act.

Action 3.D.1: Educate legal professionals about working with people with Alzheimer's disease.NASAUD recommends that these efforts take into consideration the existing framework and resources for legal services that are available through the OAA. Additionally, training should be offered to legal professionals throughout the Aging Network, and the curriculum should address the importance of cultural competence. Training should also be extended to state Adult Protective Services workers as well as to other individuals as appropriate.

Action 3.D.2: Monitor, report, and reduce inappropriate use of anti-psychotics in nursing homes.To leverage existing successful systems, NASUAD recommends that federal and state representatives from AoA's National Long-Term Care Ombudsman Program be involved in this collaborative effort.

Action 3.E.1: Explore affordable housing models.NASUAD recommends that this action include the evaluation of innovative interventions aimed at helping older adults and individuals with disabilities, including those with Alzheimer's and other dementias, remain in the community rather than in institutional settings. With a focus on programs and strategies undertaken by AoA, state agencies on aging and disabilities, and area agencies on aging, NASUAD recommends that HUD and HHS work with the Aging Network to identify innovative practices, barriers to success, and solutions to these barriers.

New Recommendation: Ensure adequate resources for programs and services supported by AoA's Alzheimer's Disease Supportive Services Program (ADSSP). ADSSP's focus is to expand the availability of diagnostic and support services for persons with Alzheimer's disease and other dementias and their caregivers, as well as to improve the responsiveness of the home and community based care systems to persons with dementia. The program focuses on serving hard-to-reach and underserved persons using proven and innovative models. In order to achieve Goal 3 in the Draft Plan, funding for ADSSP should be increased rather than reduced so that evidence based programs can continue to support the growing number of people with Alzheimer's disease and other dementias and their families at the community level.

New Recommendation: Include services for mental and behavioral health services.Mental and behavioral health services must be included in the wide array of necessary health services available to individuals with Alzheimer's and other dementias, their families, and their caregivers. Mental and behavioral health providers should be represented on interdisciplinary health care teams that work with these individuals, their families, and caregivers in primary care, institutional, and home and community based settings. Cognitive impairment alone does not preclude the ability to benefit from various forms of effective behavioral and mental health interventions.

Action 4.A.1: Design and conduct a national education and outreach initiative.NASUAD recommends that HHS use existing "No Wrong Door" systems, such as ADRCs, to link individuals to accurate information, resources, services, and supports, in a manner that recognizes the potential need to enhance the capacity of ADRCs.

Action 4.B.1: Convene leaders from state and local governments. NASUAD recommends that HHS include state directors on aging and disabilities in this collaboration, as well as state long-term care directors.

On behalf of NASUAD, I thank you for the opportunity to comment on this proposed rule. We look forward to continuing to work with HHS to develop a National Plan to Address Alzheimer's Disease that seeks to achieve the vision of a nation free of the disease, while maintaining the dignity and independence of those with Alzheimer's disease, their families and their caregivers. Please do not hesitate to contact me, or Lindsey Copeland, NASUAD's Director of Policy and Legislative Affairs to further discuss any of these issues.

Sincerely,

Martha A. RohertyExecutive DirectorNational Association of States United for Aging and DisabilitiesWashington, DC

Lindsey CopelandDirector of Policy and Legislative AffairsNational Association of States United for Aging and DisabilitiesWashington, DC

ATTACHMENT:

The National Association of States United for Aging and Disabilities (NASUAD) appreciates the opportunity to comment on the Department of Health and Human Services (HHS) Draft National Plan to Address Alzheimer's Disease, as published on February 22, 2012.

NASUAD represents the nation's 56 state and territorial agencies on aging and disabilities. As part of the National Aging Network, each of our members oversees the implementation of the Older Americans Act (OAA), through funds awarded by the Administration on Aging (AoA). Additionally, many member-states also serve as the operating agency for Medicaid home and community based services (HCBS) waivers that serve older adults, and in some cases, individuals with disabilities. The Association's principal mission is to design, improve, and sustain state systems delivering home and community based services and supports for people who are older or have a disability, and their caregivers.

The enactment of the National Alzheimer's Project Act (NAPA) on January 4, 2011, has created a long-overdue opportunity to focus the nation's attention on Alzheimer's disease, and the Association applauds the Administration's recognition of both the vital need to address the many challenges facing people with the disease, their families, and caregivers; and the urgency with which this must be done. Additionally, we find the Draft Plan's guiding principles, which seek to optimize existing resources and improve and coordinate ongoing activities, to support public-private partnerships, and to transform the way we approach Alzheimer's disease, to be an appropriate reflection of the ambitious, yet attainable, goals embodied by the plan itself.

Guided by a vision of a nation free of Alzheimer's disease, the Draft National Plan to Address Alzheimer's Disease outlines goals, strategies and actions that directly affect the Aging Network. Consequently, NASUAD respectfully submits for your consideration the following comments and recommendations.

Action 2.A.5: Strengthen state aging workforces.
NASUAD applauds the Department's efforts to strengthen state aging workforces that are "capable and culturally competent" through AoA. While implementing this action, it is important that efforts to improve state strategies do not further burden states' abilities to apply for and utilize funds from AoA. States should maintain flexibility to implement strategies that address the unique needs of the state populations through their state infrastructures.

Action 2.A.6: Support state and local Alzheimer's strategies.
NASUAD applauds states for recognizing the need to develop comprehensive plans to address Alzheimer's disease, but we are concerned that these plans are being conceptualized and developed without involvement from the Aging Network. State agencies on aging and disabilities play a critical role in the oversight and delivery of services that are designed to support older adults, including those with Alzheimer's disease, in their homes and communities. For these reasons, NASUAD recommends that state agencies on aging and disabilities, and other relevant stakeholders, should be involved at all stages of Alzheimer's state plan development.

Additionally, in accordance with the Older Americans Act, state agencies must develop a State Plan on Aging, which is envisioned by AoA as a comprehensive plan document that articulates the direction in which state long-term care efforts are moving, key strategies to address the strong desires of the rapidly growing new generation of long-term care consumers to be served in their homes and communities, and how the state will address the challenges of America's budgetary constraints and competing priorities in today's society. Given these existing requirements, State Plans on Aging may be the most appropriate place for states to describe their short and long-term strategies for addressing Alzheimer's disease. The integration of Alzheimer's state plans into State Plans on Aging would align with the need for a holistic approach to combatting the disease itself, as well as AoA' s intent that State Plans serve as valuable tools for planning and tracking all of the state's efforts on behalf of older adults.

Action 2.B.1: Link the public to diagnostic and treatment services.
NASUAD supports the Department's approach of expanding linkages between existing disease support and community information centers supported by AoA and the National Institutes of Health (NIH). In order to successfully connect members of the public with the necessary services and supports, NASUAD recommends that HHS also examine the capacity of these existing structures, particularly those within the Aging Network, such as ADRCs, I&R/A, and SHIPs, to ensure that these resources are adequately funded to meet the needs of this growing population.

Action 2.C.2: Enhance assistance for people with AD and their caregivers to prepare for care needs.
NASUAD recommends that any strategy to strengthen the Aging Network's capacity to provide families and people with AD access to appropriate services and specialized long-term care planning should be implemented in such a manner that does not overly burden these existing systems. Rather, any approach should provide the Aging Network with the necessary resources to meet these unique needs and to develop innovative practices for doing so. In addition, HHS should compile an inventory of tools to assist caregivers from federal and state agencies, as well as patient advocacy organizations, and make these tools readily available within the next year for distribution through the Aging Network.

Action 2.F.2: Implement and evaluate new care models to support effective care transitions for people with Alzheimer's disease.
NASUAD supports the Department's recognition of the potential for the ADRC Evidence Based Care Transitions program to implement evidence-based care transition models that meaningfully engage older adults, individuals with disabilities, and their informal caregivers. Throughout this evaluation process, NASUAD recommends that HHS consider the impact that additional resources could have on the ability of ADRCs to build their capacity and successfully support effective care transitions for people with Alzheimer's disease.

Action 2.F.3: Develop an AD-specific toolkit on care transitions.
NASUAD recommends that this toolkit be developed in consultation with state agencies on aging and disabilities, and be available for distribution throughout the Aging Network within the year.

Action 2.H.2: Identify steps to ensure access to long-term services and supports for younger people with AD.
NASUAD supports the proposed collaboration between the Administration on Aging (AoA), the Office on Disability, and Administration on Developmental Disabilities (ADD) to address access to long-term services and supports across the lifespan, and believes these agencies should be consulted as stakeholders throughout the plan's development and implementation.

Action 3.A.1: Identify culturally sensitive materials and training.
NASUAD supports HHS efforts to give caregivers the information and training that they need in a culturally sensitive manner, and recommends that plans to do so include input from the Aging Network. To facilitate the identification and distribution of culturally-appropriate materials to caregivers, NASUAD recommends that within the year, HHS should convene an expert panel to develop an inventory of culturally-sensitive materials and trainings that are currently available, and identify gaps that should be filled by government and patient advocacy organizations.

Action 3.A.2: Distribute materials to caregivers.
NASUAD recommends that HHS utilize its current inventory of federal agency programs and materials and make these resources readily available to all caregivers through the Aging Network.

Action 3.B.2: Identify and disseminate best practices for caregiver assessment and referral through the long-term services and supports system.
NASUAD recommends that HHS distribute the identified best practices in a manner that recognizes the variance in long-term services and supports systems across, and within, states. Since what may be a promising practice in one state may be ineffective in another, NASUAD encourages HHS to recognize the importance of state flexibility in meeting the unique needs of individuals within each state.

Action 3.B.3: Review the state of the art of evidence-based interventions that can be delivered by community-based organizations.
NASUAD recommends that this action include identifying interventions that are successful in improving the health and wellness of people with Alzheimer's disease and other dementias. Many successful evidence based programs have been proven to work for both people with Alzheimer's and other dementias, so it is important that the evaluation of such programs not be limited to only Alzheimer's specific interventions.

Action 3.B.4: Develop and disseminate evidence-based interventions for people with Alzheimer's disease and their caregivers.
To successfully implement the strategies defined in Action 3.B.3, NASUAD recommends that HHS quickly work to ensure that more people with Alzheimer's disease, and their families, have access to successful evidence based intervention programs. There are existing programs that NASUAD recommends HHS should expand as part of this effort:

  • Older Americans Act - Reauthorization of this legislation would ensure grants to states for community planning and social services, research and development projects, and personnel training in the field of aging. Funding should also be increased for the programs funded by the Act.
  • Lifespan Respite Care Act -- Reauthorization of this legislation would authorize grants to statewide respite care service providers. Grants can be used for various purposes, including training and recruiting workers and volunteers, training family caregivers and providing information about available services. Additional funds should be allocated to the Act.
  • National Family Caregivers Support Program - At a minimum, funding levels should meet the recommended levels of the President's FY12 budget ($192 million). This program provides grants to states and territories to pay for a range of programs assisting family and informal caregivers to care for loved ones at home and for as long as possible.

Action 3.B.5: Provide effective caregiver interventions through AD-capable systems.
As HHS works to connect caregivers with appropriate supportive services, NASUAD recommends that HHS build upon the existing capacity of ADRCs to serve as "No Wrong Doors" through which individuals, their families, and caregivers can access available services and programs.

Action 3.B.6: Share lessons learned through VA caregiver support strategies with federal partners.
NASUAD recognizes and applauds the successes of the VA in providing home and community based care, and realizes the importance of sharing lessons learned from the implementation of these programs across agency and state lines. NASUAD recommends that the quarterly meetings identified in this action step commence as soon as possible, so that important information is gathered and shared not only among federal programs, but also throughout the Aging Network.

Action 3.C.1: Examine awareness of long-term care needs and barriers to planning for these needs.
Once HHS completes this barrier-identification process, NASUAD recommends that HHS work with federal stakeholders, including CMS and AoA, as well as state and local agencies on aging, to develop and implement solutions to the identified obstacles.

Action 3.C.2: Expand long-term care awareness efforts.
In looking to expand public outreach and awareness about Alzheimer's disease and the importance of long-term care planning, NASUAD recommends that HHS build upon the successes of the Aging Network in providing outreach and education, such those achieved by ADRCs, I&R/A, SHIPs, and state and local agencies.

Strategy 3.D: Maintain the dignity, safety and rights of people with Alzheimer's disease.
To successfully implement this strategy, NASUAD recommends that HHS consider implementing the Elder Justice Act (EJA), as established by the Affordable Care Act (ACA). The EJA fully realizes the need to protect our most vulnerable citizens from financial exploitation, as well as from physical and emotional abuse and neglect, and it creates structures and programs for doing so. Though the EJA was signed into law in 2010, it has yet to receive any federal dollars. Without a strong financial commitment to address the growing problem of abuse and neglect among older adults, it will be impossible to fully secure the dignity, safety, and rights of people with Alzheimer's disease. NASUAD recommends that HHS work with Congress to fully fund the Elder Justice Act.

Action 3.D.1: Educate legal professionals about working with people with Alzheimer's disease.
NASUAD recommends that these efforts take into consideration the existing framework and resources for legal services that are available through the OAA. Additionally, training should be offered to legal professionals throughout the Aging Network, and the curriculum should address the importance of cultural competence. Training should also be extended to state Adult Protective Services workers as well as to other individuals as appropriate.

Action 3.D.2: Monitor, report, and reduce inappropriate use of anti-psychotics in nursing homes.
To leverage existing successful systems, NASUAD recommends that federal and state representatives from AoA' s National Long-Term Care Ombudsman Program be involved in this collaborative effort.

Action 3.E.1: Explore affordable housing models.
NASUAD recommends that this action include the evaluation of innovative interventions aimed at helping older adults and individuals with disabilities, including those with Alzheimer's and other dementias, remain in the community rather than in institutional settings. With a focus on programs and strategies undertaken by AoA, state agencies on aging and disabilities, and area agencies on aging, NASUAD recommends that HUD and HHS work with the Aging Network to identify innovative practices, barriers to success, and solutions to these barriers.

New Recommendation: Ensure adequate resources for programs and services supported by AoA's Alzheimer's Disease Supportive Services Program (ADSSP).
ADSSP's focus is to expand the availability of diagnostic and support services for persons with Alzheimer's disease and other dementias and their caregivers, as well as to improve the responsiveness of the home and community based care systems to persons with dementia. The program focuses on serving hard-to-reach and underserved persons using proven and innovative models. In order to achieve Goal 3 in the Draft Plan, funding for ADSSP should be increased rather than reduced so that evidence based programs can continue to support the growing number of people with Alzheimer's disease and other dementias and their families at the community level.

New Recommendation: Include services for mental and behavioral health services.
Mental and behavioral health services must be included in the wide array of necessary health services available to individuals with Alzheimer's and other dementias, their families, and their caregivers. Mental and behavioral health providers should be represented on interdisciplinary health care teams that work with these individuals, their families, and caregivers in primary care, institutional, and home and community based settings. Cognitive impairment alone does not preclude the ability to benefit from various forms of effective behavioral and mental health interventions.

Action 4.A.1: Design and conduct a national education and outreach initiative.
NASUAD recommends that HHS use existing "No Wrong Door" systems, such as ADRCs, to link individuals to accurate information, resources, services, and supports, in a manner that recognizes the potential need to enhance the capacity of ADRCs.

Action 4.B.1: Convene leaders from state and local governments.
NASUAD recommends that HHS include state directors on aging and disabilities in this collaboration, as well as state long-term care directors.

On behalf of NASUAD, I thank you for the opportunity to comment on the Draft National Plan to Address Alzheimer's Disease. We look forward to continuing to work with HHS to develop an approach that seeks to achieve the vision of a nation free of the disease, while maintaining the dignity and independence of older adults, individuals with disabilities, their families, and their caregivers. Please do not hesitate to contact me, or Lindsey Copeland, NASUAD's Director of Policy and Legislative Affairs to further discuss any of these issues.

Sincerely,

Martha A. Roherty
Executive Director

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Comments on NAPA draft from NP with 30 years in Alzheimer's

Please confirm that you received this message. I know today is the last day for submission.

I was hoping to get it in earlier, but my dad passed away recently.

Thank you for this opportunity to include our comments!

Warmest regards,

Susan Scanland

ATTACHMENT:  

Comments on NAPA from an Alzheimer's expert with 30 years of dementia experience

NAPA's outline is a comprehensive masterpiece which I am grateful for the opportunity to offer comments…I've waited decades for this!

I want to thank President Obama, for keeping the promise he made in response to my Town Hall question in Scranton PA during his initial campaign. My question to him was: "What do you plan to do about the Alzheimer's epidemic?"

Action 2.A.2: Encourage providers to pursue careers in geriatric specialties
Only 1% of physicians specialize in geriatrics; even fewer are experts in Alzheimer's and dementia. Less than 5% of nurse practitioners are certified as gerontological nurse practitioners. Similar statistics exist for psychiatrists who specialize in geriatrics or dementia care. We are about 13,000 geriatric physicians short now: the American Geriatrics Society estimated it will get worse: a 36,000 deficit of geriatric physicians by 2030. Is there hope?

The lack of Medicare reimbursement for comprehensive geriatric assessment, dementia assessments, family caregiver support, counseling and education have deterred young medical students from entering geriatrics. Geriatricians' salaries are considerably than physicians in sub-specialties. If the annual threat to cut Medicare continues, elders and Baby Boomers will suffer even further access to elder care specialists. If NAPA has any influence in this area, it is essential to have Alzheimer's experts for the dementia bubble ready to burst!

I, as a Gerontological Nurse Practitioner, taught family medicine residents Alzheimers and dementia care in nursing homes, assisted living facilities and on house calls between 1987-1999. Most medical students during the nineties were graduating with less than 10 hours of lectures specific to geriatrics: with no little or curriculum on Alzheimer's, dementia or geriatric pharmacology. Geriatric rotations were not common in many primary care residencies at that time. Even today, primary care provider attendance is lacking at continuing education programs on Alzheimer's disease. I suggest that NAPA offers funding for Alzheimer's CE programs to be offered by geriatric educators. I recommend at least four hours of annual mandatory CE for practicing physicians and other primary care providers on the following topics:

  1. Geriatric Prescribing: This should include emphasis on the Beers List of potentially inappropriate medications in elders. Adverse drug events affect elders more than any other age group. Persons with Alzheimer's disease are at even greater risk for delirium due to their low levels of brain acetylcholine. There are over 6 million elders on one or more potentially inappropriate medications for elders. Adverse drug reactions in seniors are a leading cause of ER visits and hospitalizations; hence further driving up US health care costs. Many providers remain uneducated re the Beers list. This has been confirmed by many nurses who participated in my 600+ seminars in over 40 states).
  2. Alzheimer's Disease (Late Onset and Early Onset) Vascular Dementia, Lewy Body Dementia, Parkinson's Dementia, and Frontotemporal Dementia: Primary health care providers need to be comfortable diagnosing and differentiating the major types of dementia, performing a dementia workup and treating Alzheimer's Disease/dementias using clinical guidelines. There are simply not enough dementia specialists for PCP's to refer to. The waiting times for families to see a dementia expert are much too long!
  3. Behavioral and Psychological Symptoms of Dementia: All prescribers treating elders need to fully understand the risks of antipsychotic therapy, paradoxical effects of benzodiazepines in frail elders, and the non-pharmacological approaches to dementia behaviors. Providers should become familiar with the evidence-based research on these topics. This will enable them to help patients and their families learn the benefits of antidementia medications and the risks of antipsychotics and benzodiazepines in elders.

Action 2.A.4: Strengthen the direct-care workforce
With a rate of 50% turnover of nursing assistants and direct care staff in states like my own (PA), we need to make LTC a setting where staff remain, ensuring continuity for resident care. Direct care workers are at risk of physical injury and disability. Administrators face rising workman's compensation costs when behaviors of dementia re not optimally treated. Staffing issues, poor retention, burnout and lack of dementia education contribute.

I request that national dementia experts who are entrepreneurs have opportunities to partner in business with governments and state agencies in educating the direct care workforce. I feel that at least 50% of training should be live; to allow staff to ask questions relevant to the patients they serve. Video and online learning can be a supplement, but should we not give the best to the staff that spend the most time with Alzheimer's residents? The #1 reason they resign is because they don't feel that they are respected. Honoring their efforts with live dementia education is an excellent strategy that will save money that is being spent on training a transitory workforce.

Many of us have been working in the community trenches of Alzheimer's care, outside of academic or research settings for decades and want to share our wealth of knowledge and experience. I've been educating nursing assistants, nurses and interdisciplinary staff for 12 years! The National Council for Certified Dementia Practitioners offers a full-day live curriculum that could lead national certification as a CDP: Certified Dementia Practitioner.

Dementia education should not be limited to nursing assistants. It should be available and funded for LPNs (who run most LTC units). Dementia research changes daily to weekly, so updates need to be shared with RN's, administrators, social workers, pharmacists, physical, occupational, recreational and speech therapists, social workers, and dieticians. Only through interdisciplinary education will senior communities be on the "same page" for best practices in long-term care, assisted living, CCRC's and home and hospice care.

I request that dementia education businesses that have clinical experience in dementia care be included in the force to strengthen the direct care workforce.

Action 2.A.5: Strengthen state aging workforces
HHS will coordinate with states to develop aging workforces that are AD-capable and culturally competent.
AoA will ask states to specify strategies to improve the AD-capability of the workforce.

I would request that state agencies will have grants and opportunities to partner with for-profits dementia education corporations, especially those that are reaching families currently though the power of social networking.

Strategy 2.B: Ensure timely and accurate diagnosis
I have been diagnosing Alzheimer's and dementia for 30 years. I still see nursing home residents, home care patients or nursing home residents who are not yet diagnosed until the moderate or late stage of Alzheimer's disease. I've met families in which loved ones were killed in auto accidents due to a driver with undiagnosed dementia, spouses who have been bankrupted by their husband's undiagnosed Alzheimer's disease. Part of the problem is family denial, apathy, fear, and helplessness. The remaining problem is that some health care providers lack knowledge of the dementia workup and evidence-based clinical guidelines for treatment. Continuing education is essential for providers: families need to be educated of the warning signs and know where to go for help.

Supporting people with Alzheimer's disease and their families and educating the public and providers.
This is HUGE. Families are starved for direction, information, support and resources. I have provided approximately 200 caregiver workshops in 40 states across the country. The lack of information on Alzheimer's disease causes family turmoil and division. I've seen cases of anger and elder abuse between family members who misinterpreted the personality changes of Alzheimer's as intentional behaviors. Many families have shared with me their frustrations with dementia care in the current health care setting. Seminars should be funded in the community, in senior centers, or in faith communities; where access is easy for stressed families and friends.

Action 1.E.3: Educate the public about the latest research findings
Translating research on dementias to professionals and the public has been the main focus of my dementia and geriatric education businesses for the past 12 years. I would request that HHS, VA, federal agencies, ADEAR will also partner with for-profit businesses who have been sharing Alzheimer's information in their businesses.

Action 2.C.1: Educate physicians and other healthcare providers about accessing long-term services and supports
Action 2.E.1: Evaluate the effectiveness of medical home models for people with AD

Interdisciplinary collaboration needs to be initiated at the undergraduate level in the health sciences, including pre-med. I have taught graduate level geriatrics for 25 years. Evidence-based studies on quality of life, morbidity and mortality, functional state in elders consistently show that the interdisciplinary team approach offers better outcomes than standard medical care. Teams consistently outperform the hierarchical model of care. This should not be surprising, as Alzheimer's care and general geriatric care is functional, medical, psychological, pharmacological, social, spiritual, legal and financial. Alzheimer's care needs to be shared jointly, not "directed" by a single profession. Re the medical home concept, I would request that nurse practitioner with Alzheimer's or gerontological experience, be included as leaders in the Alzheimer's medical home model.

Action 3.B.2: Identify and disseminate best practices for caregiver assessment and referral through the long-term services and supports system
I would request that Medicare reimbursement codes be established for comprehensive caregiver assessments and that providers can choose the caregiver assessment instrument that works best for them; rather than be directed by a 3rd party. Suggested instruments are the The Zarit Burden Interview or the Modified Caregiver Strain Index (CSI). Reimbursement should be allowed for both initial diagnosis and counseling as well as ongoing caregiver assessment and support.

Action 3.D.1: Educate legal professionals about working with people with Alzheimer's disease
I feel that for-profit Alzheimer's/dementia education corporations, non-profit dementia educators; Alzheimer's Association chapters should have the ability and financial incentives to educate attorneys. My opinion is that only attorneys who are CELAs (Certified Elder Law Attorneys) should be able to title themselves as elder care experts. There is a national examination and certification for other attorneys who are committed to the senior population who desire this certification.

Action 3.D.2: Monitor report and reduce inappropriate use of anti-psychotics in nursing homes
I have prescribed medications in LTC units over three decades. Over the past 20 years, OBRA had some impact on dementia antipsychotic use in nursing homes, but not as much as was hoped for. Despite a nearly doubled risk of mortality (1.7x) due to stroke, pneumonia, cardiovascular disease, antipsychotics are still routinely prescribed for behaviors related to dementia. Many prescribers are not aware that antipsychotic effectiveness for dementia was less than 20% effective in the CATIE study. Several studies revealed that staff dementia education was more effective than antipsychotic treatment for dementia behaviors. Funding should be available to educate prescribers regarding risks of antipsychotics for dementia. 88% of reimbursement claims submitted to Medicare for antipsychotic drugs prescribed for nursing home residents during a six-month review period (January to June 2007) were for residents diagnosed with dementia! So I applaud the recent work of Dan Levinson and the Office of Inspector General to reduce antipsychotic use for behaviors in dementia.

Please contact me if my 30 years in the "dementia trenches" will be of assistance to your remarkable action plan.

Respectfully submitted,

Susan Scanland, MSN, CRNP, GNP-BC, CDP
CEO & Founder, Dementia Connection®LLC
Clarks Summit PA
http://Dementiaconnection.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Alzheimer's Poetry Project

Please find attached a letter for the public comments on the National Alzheimer's Project Act.

Sincerely,

Gary GlaznerExecutive DirectorAlzheimer's Poetry ProjectBrooklyn, NYhttp://www.alzpoetry.com

ATTACHMENT:

Arts and Aging Research

Thank you for inviting the public to comment on the U.S. Department of Health and Human Services "Draft Framework for the National Plan to Address Alzheimer's Disease." As a pioneer in Art and Aging programming and recipient of the 2012 MetLife Foundation Creativity and Aging in America Leadership award in the category of Community, the Alzheimer's Poetry Project welcomes the opportunity to provide recommendations for your consideration.

We believe that the five goals outlined in the plan which form the foundation of the National Plan is well formulated and seeks to offer a comprehensive and multi-faceted approach. In comparing the National Plan to the most recent work of the three Sub-Committees, we felt the need to underscore a role for arts and aging research.

While our ultimate goal is a world without Alzheimer's, we recognize those living with the disease today and tomorrow will require the best possible care we can offer. We are concerned that the ultimate research agenda will be too narrow in scope and leave research relative to care practices as a back-burner issue, instead of integrated as a significant component.

Among the areas in NAPA that arts programming could be especially effective include educating family and the public about the disease and under lessening the stigma of the disease. A number of arts groups including the Alzheimer's Poetry Project have this effect when we hold workshops for family members and students. Our public arts events such as "Alzheimer's Poetry Day" held at among other locations, the National Hispanic Cultural Center held in Albuquerque, New Mexico on November 5th 2011 in English and Spanish is one such example.

A few arts programs serving people living with Alzheimer's disease and related dementia and their families, that have extensive experience in helping to educate caregivers and in demonstrating the role that creativity can play in the health of people navigating memory loss, that have show promise in research studies include:

  • "Meet Me at MoMA," The Museum of Modern Arts dementia program.
  • "Time Slips," a Storytelling project with people with Alzheimer's disease and their caregivers.
  • SONGWRITING WORKS., which engages elders, older adults and families in hands- on songwriting and performance using an internationally recognized method proven to restore health and community.
  • "The Dancing Heart," Kairos Dance, which vitally engages those with mid-to-late stage Alzheimer's, in a weekly dance and storytelling playshop that has shown to positively improve the health of participants.

One agency missing from the list of participating inter-agency departments and government agencies tasked to help support the development of the national plan is the National Endowment for the Arts (NEA). Recently, this agency partnered with the U.S. Department of Health and Human Services in creating the white paper "The Arts and Human Development: Learning across the Lifespan," which frames a national research agenda for the arts, health and well-being. We recommend that the NEA have an opportunity to weigh in and support efforts in creating NAPA.

In the NEA, "Creativity and Aging Study The Impact of Professionally Conducted Cultural Programs on Older Adults," 2006 they write, "...In conclusion, these results point to powerful positive intervention effects of these community-based art programs run by professional artists. They point to true health promotion and disease prevention effects."

In addition, we would like to bring to your attention to two among many studies that show the impact of non-pharmaceutical interventions in improving the health and quality of life for people living with Alzheimer's disease and related dementia including: "Singing while caring for persons with dementia1," and "Using poetry to improve the quality of life and care for people with dementia.2"

We must ask our selves what immediate help can we provide to people living with Alzheimer's disease and related dementias and how can we help them to continue to actively participate in the life of a community. Arts based dementia programming offers a chance to improve the quality of life of people living with dementia and their caregivers today. Thank you for the opportunity to share our thoughts and recommendations.

Sincerely,

Gary Glazner
Founder and Executive Director, Alzheimer's Poetry Project
New Mexico Literary Arts
Santa Fe, NM

  1. "Singing while caring for persons with dementia," Lena Marmsta°l Hammara,b*, Eva Go..tella,b and Gabriella Engstro..mc aMa..lardalen University, School of Health, Care and Social Welfare, Va..stera°s, Sweden; bKarolinska Institute, Department of Neurobiology, Care Science and Society, Division of Nursing, Stockholm, Sweden;cMa..lardalen University, School of Health, Care and Social Welfare, Eskilstuna, Sweden Arts & Health Vol. 3, No. 1, March 2011, 39.50
  2. "Using poetry to improve the quality of life and care for people with dementia," Helen Gregory University of Gloucestershire, Natural and Social Sciences, Cheltenham, UK (Received 9 December 2010; final version received 20 March 2011), Arts & Health Vol. 3, No. 2, September 2011, 160.172

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Comments on draft National Plan to Address Alzheimer's Disease from Researcher & former Alz Assn leader

Thank you so much for signing NAPA and putting creation of our first National Plan to Address Alzheimer's Disease on the fast track.

I preface my comments with brief personal history.

I joined the national Alzheimer's Association early in 1980, co-founded both the Chicago and Detroit area chapters as I moved around the country, joined the National Board of Directors circa 1981 and rose to become a national Vice Chair and Chair of the Public Policy Committee. In 1984 I co-founded the Alzheimer's Disease International. I am also proud to have single-handedly suggested the idea of what became the federally funded program to states to create innovative Alzheimer's programs with special emphasis on serving minority populations. While Chair of the Public Policy Committee for the national Alzheimer's Association I was also successful in getting our board to hire full time professional public policy staff, create our annual spring "Public Policy Forum" to bring our citizen advocates to Washington DC to be educated and meet with their Congressional representatives. We also developed our first coalition efforts, e.g. with the then Long Term Care campaign, and the National Citizen's Coalition for Nursing Home Reform and helped support the nursing home reform bill that became law (OBRA 1987). We also held our first meetings with members of the CBO and Medicare/Medicaid administration officials to examine what information was needed to start developing a plan for how to meet the service and funding needs of people with dementia and their families. Later, in the 1990's while at Wellesley Centers for Women we looked at the scary prospects of the diminished numbers of people available (the baby bust era e.g. my children's birth cohort) to serve as care partners to those baby boomers who would be developing Alzheimer's and other brain/body diseases in 2040-2050. I then was asked to join Boston University's NIH funded Alzheimer's Disease Center and Department of Neurology to continue my clinical intervention studies; I currently have a small phase I trial of nutritional supplements underway, funded by the U.S. Alzheimer's Association.

My work over the past 30 plus years on behalf of Alzheimer's disease and now the broader field of brain health, is all inspired by my mother Frances Fink Emerson who developed Alzheimer's disease in her early 50's, lived 25 years and died in 1990 with no ability for willed action or movement of any sort, and a brain shrunk to half its original size. She received great care both at home -9 years-and in a nursing home -- 16 years- (and thus lived a long time despite her disabilities....no other health issues) in an era when we knew only a fraction of what we know now, thanks primarily to the work of the Alzheimer's Association, and research funding by NIH, Alzheimer's Association and WHO and other organizations and caring people around the world.

Today I am an Alzheimer's researcher connected with Boston University School of Medicine, actively serve on my local chapter board (Alz. Assn of Massachusetts and New Hampshire) as member of the Medical Scientific Advisory Committee, serve as a Board Member Emeritus of the national Alzheimer's Association (an inactive role), and actively attend and present scientific papers or posters at the Alzheimer's Disease International. I also have a small business that brings evidence-based knowledge about brain healthy lifestyles to organizations and individuals and families. My centerpiece is the evidence-based Memory Preservation Nutrition program, which I am proud to be bringing to 6 Boston area Assisted Living communities to help them improve the healthfulness of the foods their residents are served and eating. I am also a popular speaker, mainly on the topic of "Healthy Eating for a Healthy Brain and Body." And was featured as part of a Medical Journal TV news report on Boston Channel 5's Chronicle on March 20, 2012 and November 18, 2011.

I am excited by the breadth and content of the draft national Alzheimer's plan and want to make just a few pointed comments about moving forward. I am also attaching a couple documents that might be of interest in summarizing some of the recent work related to brain healthy lifestyles and reducing risk of Alzheimer's and other brain diseases. Here also is the direct link to the article I wrote for Sage Encyclopedia 'Alzheimer's Disease: Encyclopedia of Lifestyle Medicine and Health' See it at: http://www.sage-ereference.com/abstract/lifestylemedicinehealth/n18.xml

First, I am gratified that the draft plan calls for research and program development in the realm of healthy lifestyles, not just innovations in the realm of pharmaceutical and medical research, which of course is needed as we would all like to find the magic bullet(s) to prevent and cure this disease. But given the complexity of this mysterious disease and the delicacy and intricacy of the brain, such magic bullets may not exist. Alzheimer's may be as challenging to reduce risk as has been heart disease, stroke and diabetes, since they are all interrelated in ways we are still seeking to understand. Thus major public health initiatives based on evidence uncovered in the fields of nutrition, physical exercise, sleep, stress reduction and much more may be what works to help our society avoid the catastrophe of doubling, then quadrupling the numbers of Americans with Alzheimer's disease as the numbers of people who could serve as care partners and paid professional providers shrinks in relative numbers.

Second, as an active member of the international Alzheimer's research and practice communities I strongly urge that the HHS Administrative offices charged with designing, refining and implementing the plan be in close liaison with international efforts to combat Alzheimer's disease. People in the US are often very parochial and have no idea of the great strides being made elsewhere. Also, because our healthcare system is presently dominated by for-profit organizations and pharmaceutical companies, it is harder for us to see clearly public health priorities that might be the best use of resources. The international community faces graver restraints in resources but at the same time has the power of being able to find collective solutions that benefit the most people. For instance at our most recent conference of ADI, held in London, the closing debate was whether enough evidence now exists to mount a major public health initiative targeting improvements in healthy lifestyles for middle-aged adults....vs. an even broader public health initiative to improve the health and wellbeing, especially nutrition, of babies and pregnant women and through that route decrease the numbers of future adults with brain diseases. Meanwhile we are all gearing up to try to be ready to serve the millions of adults who already have Alzheimer's, who will develop it if we don't find a way to slow down the progression and delay the age of onset.

Alzheimer's Disease International's small but very competent staff (Mark Wortman is the CEO, based at the UK Alzheimer's offices in London) and with several groups of collaborative research groups who are keyed in on finding practical solutions to this world wide crisis we are all facing together.

One of these research groups is called "10-66" which receives both NIH and WHO funding to conduct important cross-cultural studies in the developing world to establish true and comparable prevalence/incidence rates of both Alzheimer's disease and Mild Cognitive Impairment, has conducted international clinical trials of caregiver interventions to determine usefulness and costs in a variety of different countries and financial settings, and is now looking at some broader public policy and public health issues. Their annual reports can be found on the ADI website:

In addition, there is a collaborative effort of several country based large research projects examining whether certain lifestyle interventions could help reduce the incidence and prevalence of Alzheimer's disease, or delay the age of initial symptoms. Each initiative has different founding sources and different specific research objectives and methods, but by combining and collaborating they hope to increase the robustness of their findings. One of the three studies is taking place in Finland, led by Miia Kivipelto with major funding from Finland's Health Department, and some additional funding from the U.S. Alzheimer's Association and perhaps other sources as well. I touch on that study in one of the two papers I have attached to this email.

Another perspective that was discussed at this last London meeting was, how best to proceed in planning CARE in the depressing scenario that we can't prevent most of the cases of Alzheimer's. What public policy is best. One that is disease specific, or that is based on disabilities, across diseases and health conditions. This was very interesting to me arising among a group of people who has fought hard for over 25 years to get their home countries to give proper recognition to Alzheimer's disease and other dementias, and to develop national plans. But once one has raised awareness, achieved sufficient specific research dollars and developed specific care programs, then one is freer to look at the broader public policy perspectives and see what is the best use of resources for a country, and what is most likely to be politicall feasible.

As you could gather from my resume, I stand ready to volunteer my time and attention to helping you in your efforts should you see a way I could be helpful.

In the meantime I applaud all the work you are doing and say THANK YOU. You all are fulfilling a dream I've held since the 1980's of a true national effort to combat Alzheimer's disease, both through research, public health and programmatic efforts at the local, state and federal levels.

Sincerely,

Nancy B. Emerson Lombardo, Ph.D.PresidentHealthCare Insights, LLCActon, MA

Adjunct Research Assistant Professor of NeurologyBoston University School of MedicineDept. of Neurologyhttp://buedu/alzresearchhttp://healthcareinsights.net

ATTACHMENT #1:

Alzheimer's Disease & Lifestyle

Entry Citation:

Lombardo, Nancy B. Emerson. "Alzheimer's Disease." Encyclopedia of Lifestyle Medicine and Health. Ed. James M. Rippe, MD. Thousand Oaks, CA: SAGE, 2012. 120-42. SAGE Reference Online. Web. 29 Feb. 2012. 6000 words on-line accessed 2 29 2012

This entry (a) describes the evolving definition of Alzheimer's disease (AD) and its prevalence; (b) summarizes evidence for nutrition, physical exercise, and other healthy lifestyle interventions that may delay onset, prevent occurrence, or slow the progression of AD and other dementias and maintain the emotional and physical health of both the person with dementia and his or her care partners; (c) identifies key lifestyle strategies for preserving brain health--both cognitive and emotional--and how they may be related to body health strategies; and (d) highlights some clinical trial results and introduces a groundbreaking multi-domain study under way in Finland and the body of evidence leading to this seminal trial.

Readers may take away confirmation of the importance of some of the things they are already doing and gain ideas and motivation to adopt brain-healthy nutrition and lifestyles.

Prevalence

The World Alzheimer Report 2010: The Global Economic Impact of Dementia, published by Alzheimer's Disease International, reported that around 0.5% of the world's total population live with dementia, predominantly AD, and that the total estimated worldwide costs of dementia were US$604 billion in 2010, equivalent to around 1% of the world's gross domestic product. The Alzheimer's Association reports that there are nearly 15 million caregivers for Alzheimer's and dementia patients in the United States. AD is currently the sixth leading cause of death in the United States and the one growing most rapidly (by 50% from 2000 to 2007). The growth rate of this epidemic is expected to further accelerate with the aging of the baby boomer generation, increasing personal costs to families, which provide the bulk of care, and rapidly escalating economic costs from $172 billion today to more than $1 trillion by 2050. The U.S. National Alzheimer's Project Act was enacted into law in January 2011 to create a coordinated national strategy to address this national public health emergency with widespread social and economic consequences.

Definition of AD and Diagnostic Criteria

AD is the most common form of dementia, causing multiple impairments in thinking and cognition, including planning and organization (executive function), attention, short-term episodic memory (especially the recording of events and experiences), and sometimes visual-spatial function. The pathological hallmarks of AD are extracellular plaques composed of a protein called beta-amyloid (also called "A-beta") and the intracellular accumulations of neurofibrillary tangles, the insoluble paired helical filaments of an abnormally phosphorylated tau protein, and a cytoskeletal protein critical to the brain cell structure. Studies suggest that the soluble forms of A-beta, not the more visible plaques, are the toxic form. The normal function of A-beta is to kill microbes, as part of the innate immune system. It is the large amount of A-beta present in AD that is abnormal. Moreover, plaques and tangles appear to be late-stage developments and may or may not reflect the initiating biological sequelae, which may include injury, inflammation, disruptions of cell signaling pathways, oxidative stress, and disruptions in glucose and/or lipid metabolic processes.

New Criteria for Diagnosing and Redefining AD

National Institutes of Health/Alzheimer's Association working groups in 2010-2011 updated the criteria for diagnosing Alzheimer's dementia, added criteria for diagnosing mild cognitive impairment (MCI) due to underlying Alzheimer's pathology, and set the framework for identifying and testing biomarkers that in the near future could be used to diagnose "preclinical AD." Thus, the definition of AD has expanded beyond dementia and cognitive impairment to include a presymptomatic stage of the disease.

Biomarkers may improve the accuracy of diagnoses of both Alzheimer's dementia and MCI due to Alzheimer's pathology during life and serve as clinical trial end points. Prominent among the new biomarkers are neuroimaging (e.g., of A-beta levels, glucose processing, and the size and shape of brain structures) and measuring the presence of A-beta and tau in cerebrospinal fluid. These criteria will replace those established in 1984 as the "NINCDS-ADRDA" criteria. These criteria, developed by the National Institute of Neurological Communicative Disorders and Stroke (NINCDS) and the Alzheimer's Disease and Related Disorders Association (ADRDA), were universally adopted and have been in use, without modification, for more than 25 years. One of the challenges of prevention and treatment trials, both with preclinical AD and in MCI, is the inadequacy of cognitive tests to catch early changes reliably. The emergence of other outcome markers, namely brain imaging, and other biomarkers, is revolutionizing the field.

Scientists participating in the work groups formulating the new guidelines note that the updates were urgently needed for establishing the next generation of clinical trials for possible pharmaceutical and nonpharmaceutical interventions. In medical practice, the proposed changes represent refinements of existing criteria for the diagnosis of Alzheimer's dementia. The guidelines suggest, for example, that physicians recognize that complaints of loss of memory may not always be the first or most prominent presenting symptom. A decline in other aspects of cognition (e.g., word finding, vision/spatial issues, and impaired reasoning, judgment, and problem solving) may be the first presenting or the most prominent symptoms. Many research scientists in the field are concerned that current biomarker criteria give too much emphasis to A-beta and tau (especially A-beta) and too little to the role that oxidative stress, inflammation, vascular pathology, white matter, and other lesions or injuries may play in cognitive decline, in clinical symptoms of dementia, and in the development of abnormal levels of A-beta and tau. Ignoring a large body of evidence could hinder identifying proper treatments and preventive interventions, particularly lifestyle interventions. It is also important to guard against reductionist AD theories because what is now called "Alzheimer's disease" may be one or more multifactorial disorders and thus may require "multitherapies."

The evolving understanding of AD includes the recognition that individuals with a diagnoses of AD and MCI can still learn new information and acquire new habits, using a variety of preserved functions such as other forms of memory (e.g., visual, emotional, procedural). In addition, it is important to realize that while people with Alzheimer's may have lost many brain cells and synapses, they still retain many healthy brain cells, so it is important to work with them to maintain brain health in the hope of slowing progression, maintaining positive emotion, and improving quality of life.

Possible Causes or Etiology of AD as Related to Lifestyle

The exact causes and etiology of AD are still not fully known. As of 2011, there are still no methods of perfect diagnosis during life or ways to cure or completely prevent AD. Age remains the biggest risk factor for AD, with (lower) education levels the only other consistent risk factor across all ethnic groups. However, much has been learned in the past 30 years, lifestyles are at the heart of this new knowledge.

Research now recognizes AD as a complex chronic disease with many environmental and genetic factors, whose pathology may begin to accumulate 10 to 30 or more years before the appearance of noticeable clinical symptoms. With such a long prodromal stage, preventive interventions are needed that can be safely used for decades. While a few families have an autosomnal dominant form of AD, most individuals have what is called the "sporadic" form, without clear genetic patterns. The APOE4 type of allele confers a dose-related risk for persons of European origin but not typically for those of African origin. While other risk-conferring genes have been identified, most scientists have found that environmental factors are probably at least as important as genetic ones. Recognition of the importance of lifestyle flows directly from the multiple studies that have shown that brain and cognitive health is dramatically affected by the rest of the body, especially the cardiovascular, glucose metabolism, and cell energy systems.

Observational and prospective studies have confirmed this logical relationship and spawned numerous animal studies to explore the relationships between particular lifestyle factors, cognition, and the mechanisms of action. For instance, physical exercise as well as many nutrients and food substances with anti-oxidant or anti-inflammatory properties have proven to lower the amount of A-beta in animal models and also lower inflammation. Some nutrients also improve neuronal cell signaling, lipid metabolism, and glucose metabolism and/or decrease oxidative stress.

This sort of evidence, together with numerous observational studies with a variety of human populations in different countries, has established that appropriate nutrition and physical activity are good candidates for helping reduce the risk of dementia, cognitive decline, and AD in humans. In 2010, gold-standard randomized clinical trials for integrated evidence-based nutrition programs had not yet been undertaken, and those for various forms of exercise had just begun. These kinds of lifestyle interventions are very difficult to get funded and then carry out, so scientists cannot yet say with certainty that the various lifestyles indicated by an array of other studies will be sufficient to delay the onset of cognitive symptoms or slow progression. However, scientists have already proven with certainty the link between nutrition, physical exercise, and certain other lifestyle factors to prevent, slow, or even reverse other related chronic diseases such as stroke, other cardiovascular diseases, diabetes, and insulin resistance. Therefore, most researchers and clinicians are ready to recommend lifestyle approaches as these offer probable additional benefits to cognitive health. Lifestyle interventions are also of keen interest since, given the multiple decades of presymptomatic development of AD-related pathology, preventive interventions need to be safe and tolerable.

A growing body of research suggests that a variety of nutritional factors, social engagement, mental stimulation, physical exercise, complex activities incorporating multiple domains, and management of stress and depression all help preserve brain health. Managing both emotional and physical stress is important because heightened cortisol levels have been connected to cognitive decline as well as to faster rates of decline in persons with Alzheimer's dementia. Moreover, research reports an association between cortisol levels, hippocampal shrinkage, and insulin resistance. Adequate sleep is also essential for a healthy brain, neuroplasticity, and memory. Music, art, acupuncture, T'ai Chi, meditation, and certain other spiritual practices, as well as having a meaning and purpose in life, also appear to enhance brain health. Many of these lifestyle factors are related to neuronal plasticity and the generation of new brain cells as well as prevention of deterioration of existing brain cells.

Research indicates some common factors for both cognitive and emotional health. Intervention studies indicate the independent and synergistic efficacy of nutrition, cognitive rehabilitation, physical exercise, and various alternative medicine practices in improving cognition, mood, and quality of life of persons who already live with AD or other memory or brain disorders. The challenge is in actually making behavioral changes to adopt these protective lifestyles.

Why Lifestyle Factors Are Important to Brain Health

Epidemiological studies show that the prevalence of AD doubles every 5 years after the age of 65 (with 13% of individuals over the age of 65 having AD and about 40% over 85 years having AD). If lifestyle interventions can delay the onset of AD by 5 years, the prevalence of the disease would be halved, along with all the attendant human and financial costs.

Evidence suggests that healthy brain tissue is better able to withstand the ravages of age, genetic vulnerabilities, environmental stresses, accidents, toxins, and disease. Further, healthy lifestyles help enhance and strengthen neurons, dendrites, and other body and brain cells.

Many studies, including gold-standard clinical trials in the case of many other chronic diseases, have suggested that a healthy lifestyle, especially with regard to nutrition and exercise, may help prevent and treat most human chronic diseases. Thus, healthy lifestyles are helpful to both the person with dementia and his or her care partners, who are at extra risk of depression and illness because of caregiving.

Cardiovascular health and normal glucose metabolism contribute to brain health, while the rise in obesity and other chronic illnesses has a direct negative impact on brain health. Dozens of studies have established that each vascular risk factor adds to the risk for AD and severity of dementia.

Diabetes and prediabetes increase the risk of cognitive decline, MCI and dementia, and, according to some scientists, AD in particular. Studies using imaging techniques in adults and teenagers show that diabetes, prediabetes, or abnormally high insulin resistance as measured by glycosylated hemoglobin (HbA1c) shrinks the hippocampus, the major site for short-term memory and spatial memory, encoding of new information and experiences, as well as some aspects of emotional function. These findings should raise serious public health concerns because study results show that the hippocampi are already shrinking in obese teenagers with type 2 diabetes mellitus as well as in middle-aged nondiabetic adults with insulin resistance. Cognitive impairments in nondiabetic adults were found to be associated with the degree of insulin resistance. Related memory impairments and related white-matter changes were observed in adults with type 2 diabetes mellitus and brain-derived neurotropic factor (BDNF) levels were reduced in adults with insulin resistance.

Inflammation is believed to play a key role in the etiology of AD and has been associated with an increased risk of AD. Existing inflammation, as well as inflammatory events such as infections, surgery, or heart attacks, hastens progression in people with AD. Oxidative stress also plays a key role in AD etiology, including increasing inflammation and oxidation of brain lipids. In addition, mitochondrial dysfunction is part of AD etiology and relates to the energy systems within the brain cells.

In summary, whatever hurts the heart and blood vessels harms the brain. Problems with glucose metabolism and insulin levels also threaten the brain. The organ and disease silos are disintegrating, with increasingly similar clinical recommendations for better nutrition and exercise and for managing stress to treat or prevent a wide range of chronic diseases affecting nearly every organ in the body.

Recommended Lifestyle Approaches for Cognitive Health

Many leaders in the field of brain health believe that the evidence is already sufficient to suggest that regardless of personal risk factors, and with or without pharmacologic intervention, a healthful lifestyle is likely to reduce risk, delay onset, and slow the progression of AD and vascular dementia. Some of these researchers and clinicians conclude that the evidence suggests that it is the combination of vascular lesions (e.g., microstrokes or white-matter lesions) with Alzheimer's pathology that together result in symptoms of MCI and dementia. If these hypotheses are correct, then they offer another argument in favor of practicing healthy lifestyles to reduce cognitive decline.

Nutrition, physical exercise, and other lifestyle interventions work on multiple pathways to improve overall health in multiple organs with minimal or no side effects, even over many decades, which is important since scientists now believe that the pathology of AD--that is, the development of excess A-beta and abnormal phosphorylated tau--begins several decades before the appearance of cognitive symptoms.

Multiple lifestyle factors can have synergistic or additive effects. One of the most interesting trials involved the 2-year study of aged beagle dogs conducted by Carl Cotman's group at the University of California, Irvine, which showed that an enriched diet alone improved performance on a cognitive task from 25% in the control group to 67% of the experimental animals. A third group, with increased physical activity and social play, improved performance to 80%, while combining enriched diet and exercise-play interventions resulted in 100% of a fourth group of dogs being able to perform the difficult learning task.

Given the well-established connection between cardiovascular disease, insulin resistance, and diabetes and cognitive function and cognitive decline, and the evidence-based certainty that good nutrition, physical activity, and certain other lifestyle changes help treat or prevent these diseases, more and more people in the AD field have concluded that it is good clinical practice to recommend these healthy lifestyles to persons concerned about their brain health or who already have a diagnosis of MCI or dementia, including AD.

Multidomain Lifestyle Study Under Way in Finland

Many people in the field agree that the preventive intervention most likely to be effective will be multifaceted to be potent enough to delay the onset of AD or slow it down. There is one such multicenter randomized clinical trial under way in Finland, called the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) Trial, under the leadership of Miia Kivipelto and funded by the Finnish government, the U.S. National Institutes of Health, and the national Alzheimer's Association (clinicaltrials.gov/ct2/show/NCT01041989). Persons between 60 and 77 years of age who are determined to be at increased risk of cognitive decline and dementia are randomized to a control group (standard health counseling at baseline) or to a preventive intervention for 2 years. The latter receive multidisciplinary treatment that includes nutritional guidance, physical exercise, cognitive training and social activity, and intensive monitoring and management of metabolic (e.g., diabetes) and vascular risk factors. Importantly, each intervention includes a coach to guide and encourage the implementation of each lifestyle change. In addition to cognitive end points, a variety of potential biomarkers are monitored in relationship to any cognitive change, including biochemical markers of inflammation or oxidation, hormones controlling blood sugars and fats, as well as brain imaging.

Dr. Kivipelto's study reflects the combined wisdom of many leaders in the field, including the International Academy of Nutrition and Aging. The FINGER study builds on more than a decade of research, suggesting the importance of each domain of this combined program. The collective findings of some of these studies are summarized in the next section.

Selected Findings of Lifestyle Studies

Observational studies have established that each of the following lifestyle behaviors may be independently related to a lower risk of dementia: (a) nutrition, (b) physical fitness, (c) social activities and social engagement, (d) organization memberships, (e) productive (meaningful) activities, (f) mental activities (e.g., reading, word spelling/recognition, numbers, and other games), and (g) management of stress. Several researchers, using meta-analyses, have concluded that the most potent activities are complex activities that involve multiple domains, especially activities that include physical activity and social interaction as well as cognitive challenge, such as dancing and golf. Examples of activities involving 2 domains are board or card games, knitting, gardening, T'ai Chi, chi gong or yoga, and doing exercise in a group. Complex and novel activities such as learning a new language, especially sign language, traveling to new places, and playing a musical instrument, especially a new one, are also particularly recommended.

A 2010 Institute of Medicine Consensus conference and a Cochrane review of certain lifestyle interventions for preserving cognitive health concluded that there was insufficient evidence on which to base clinical recommendations. The Cochrane reviews and the Institute of Medicine, however, used very strict criteria for acceptable clinical trials, and for physical exercise, they reviewed only a few clinical trials of very small size or pilot in nature, which were underpowered. Both panels tended to be overly conservative and looking backward rather than forward in a brand new research field where rigorous clinical trials were just beginning to be designed, funded, and reviewed and where, logically, these interventions might have their biggest impact in the preclinical or MCI stage of AD, where outcome measures are still under development. Most reviews also do not integrate the combined weight of observational studies with clinical trials in animal models of AD, which are the first phase of testing some of the factors observed in human longitudinal studies and of researching mechanisms of action. Nutritional trials, especially those with integrated complex nutritional programs, are difficult to design and gain adherence to, and physical exercise programs to some extent suffer the same challenges. Published randomized controlled trials in the nutrition field as of 2011 were limited to single substances or small groups of vitamins.

Nonetheless the body of evidence is growing rapidly.

Nutrition

One well-structured prospective study published in 2010 found that persons with the highest levels of all 8 forms of vitamin E (tocopherols and tocotrienols) had half the risk of AD, whereas previous studies and intervention trials, less knowledgeable about the necessity of all forms of vitamin E in the brain and body, had looked at only a-tocopherol. This Karolinska Institutet (Sweden) study concluded that it was the combination of the 8 vitamin E forms that was important to brain health.

Various nutritional studies using animal models have shown the power of various single nutrients to lower A-beta levels, reduce oxidative stress, and improve cognitive function. Clinical trials of persons with MCI or AD have been few in number and show mixed results but some limited promise. A Swedish clinical trial of fish oil capsules using a daily dose of 1.7 mg of docosahexaenoic acid and 0.6 mg of eicosapentaenoic acid (2 long-chain omega-3 fatty acids abundant in the human brain) reported preliminary results suggesting a slowing of cognitive decline in persons with early-stage AD. A larger trial of just algae-derived docosahexaenoic acid had no effect across all AD patients. One study of 3 B vitamins (B6, B12, and folate) had no effect in persons with AD, but another using lower doses of the same 3 B vitamins improved cognition in people with MCI, but only in those with high homocysteine levels. These results suggest that while combination dietary programs may produce stronger effects on cognition than current pharmacological treatments for AD, single nutrients may be insufficient, and nutritional interventions may have more effect in MCI and very early-stage AD. Continued clinical research is needed.

Of greater interest for clinical study is combining multiple nutrients since the most recent observational studies have suggested that it is combinations of whole foods, such as in the Mediterranean or DASH (Dietary Approaches to Stop Hypertension) diets, that really make a difference. A 2006 integrative review presents evidence of how various nutrients appear to work on the multiple different pathways leading to AD and/or dementia, including inflammation, oxidative stress, glucose or insulin abnormalities, levels of A-beta and tau, cell signaling, and mitochondrial dysfunction. A recent animal study showed that a combination of whole foods-based nutrients, including vegetable, fruit, and herb and spice nutrients combined with fish oil, appears to restore mitochondrial dysfunction in triply transgenic AD mice, and a clinical trial is now under way in healthy older adults. A series of pilot studies with both mice and humans conducted by Thomas Shea and colleagues have shown preliminary success in improving short-term memory and attention in both cognitively normal adults and patients with AD, with a novel combination of vitamins and nutrients: namely, vitamin E, folic acid, vitamin B12, N-acetyl-l-cysteine, acetyl-l-carnitine hydrochloride, and S-adenosylmethionine. These preliminary studies suggest an important focus for continued studies in nutrition and brain health.

Physical Activity

Most of the meta-analyses of physical activity that had less strict criteria for study inclusion than the Cochrane reviews reported consistently positive results, backing up the observational studies that had linked physical activity to reduced incidence of AD and slower rates of conversion from MCI to AD dementia. An array of intervention studies in healthy older adults, people with MCI, and people with early AD, all found evidence of decrease in the rates of cognitive decline.

Animal studies have established that physical activity increases cognitive function and identified at least 2 newer mechanisms of action beyond the known cardiovascular mechanisms: (1) decrease in levels of A-beta in the brain and (2) increased amount and rates of neurogenesis, especially in the hippocampus. Human studies have established that people who exercise more have higher levels of hippocampal BDNF, a brain chemical related to neurogenesis. Increased serum BDNF levels have been correlated with larger hippocampi and better memory performance.

Kirk I. Erickson's randomized controlled study using magnetic resonance imaging as an outcome measure established that aerobic exercise (specifically 1 year of walking 3 times a week for 40 minutes) can increase the size of critical brain structures. Consistent with the expected 1% to 2% annual hippocampal loss in dementia-free seniors, the control group (which spent an equal amount of time stretching) lost about 1.4% volume in this brain region by the end of the 12-month trial. In contrast, the hippocampi of the walkers grew by roughly 2%. In addition, researchers found that greater elevations in serum BDNF were linked to greater gains in hippocampal volume.

The benefit of walking exercise seemed specific to the anterior part of the hippocampus (including the dentate gyrus). Similar effects did not appear in the thalamus, caudate nucleus, or posterior hippocampus. The dentate gyrus is the most metabolically active part of our brain and is involved in spatial memory, short-term memory, and new learning. Neurogenesis is most prominent in this part of the adult brain; many surmise that it is so because creation of new brain cells and dendritic connections is essential to the production of new memories.

Meditation and Spiritual Practices

Stress management and spiritual practices may also contribute to brain health. For example, a recent study using magnetic resonance imaging of the brain in live human participants reported that persons participating in an 8-week mindfulness meditation program experienced measurable increases in the hippocampus regions associated with memory, sense of self, and empathy while reducing areas of the amygdala associated with stress. Numerous studies demonstrate that other spiritual practices such as forgiveness improve emotional and mental health. By relieving stress and depression and decreasing cortisol levels, such practices may also improve cognitive health.

Cognitive Training, Cognitive Rehabilitation, and Cognitive-Kinetic Interventions

With regard to cognitive training and cognitive rehabilitation strategies to improve and preserve cognition, the evidence is particularly strong. Observational studies suggested that "use it or lose it" applies to keeping one's mind active. The groundbreaking ACTIVE randomized clinical trial study demonstrated that even short-term cognitive skills practice interventions had persistent effects in the healthy elderly. A number of later studies suggest that the most effective interventions combine modalities--for example, cognitive training with physical exercise and support groups.

Multifaceted Relationship Between Physical Activity and Cognition

In population and clinical studies, physical activity and exercise have been shown to have a positive effect on cognitive function in people of all ages. Recent studies have found that physical exercise stimulates a positive increase in executive control processes, including planning, scheduling, working memory, inhibitory processes, and multitasking. The impact of physical activity on cognitive abilities also continues through the entire lifespan. Physical exercise, for example, has been found to be a key facilitator in neurogenesis, particularly in the hippocampus as well as in other areas of the brain. In general, the rate of neurogenesis and other cognitive benefits is related to the intensity, novelty, and dose of physical activity and exercise. Both endurance (aerobic) and strength (resistance training) exercise benefit both cognitively intact and cognitively impaired individuals.

With regard to improvement in individuals with MCI and AD, substantial clinical trial evidence suggests that various cognitive rehabilitation and training strategies may help restore lost function and slow progression of cognitive decline. Different strategies appear to have more or less potent effects in only one area or in multiple areas. For example, a cognitive training strategy targeting episodic memory benefited only episodic memory. A more holistic strategy that combined physical movements based on kinetic/cognitive theory with cognitive training benefitted areas of attention, spatial abilities, language, memory executive functions, and daily functions. Arkin's pioneering study, initially published in 1999, found a combination of simultaneous physical exercise and conversation, and language practice and word games, interspersed with volunteer activity, particularly effective.

Barriers to Adopting Lifestyle Initiatives

There are several barriers to adopting lifestyle changes, including cultural and psychological barriers. Cultural challenges include the overdependence of the American health care system, and therefore of most individuals, on pharmaceuticals and surgery, which have limited preventive roles for many chronic diseases or could be more potent if combined with lifestyle changes. Perhaps the biggest challenge for implementing these interventions as standard clinical practice is financial. Generally, lifestyle interventions are not covered by most current health insurance plans, although the concept of health promotion and prevention of illness is starting to develop. For instance, because research has established that having a "coach" or personal trainer helps individuals make lasting lifestyle changes, some private insurers will supply a free "health coach" even if the actual interventions are not reimbursed.

To promote brain health, prescribed cognitive training and physical activity may be the modalities most likely to be recognized with some incentives. Nutrition for brain health promotion is not currently covered, although individuals with diagnoses may find some limited coverage for counseling with licensed nutritionists. For families working together to provide a healthier home environment for both a patient with brain disease and his or her care partners, one possible source of funding is the National Family Caregiver Support program, which can be accessed online at http://www.aoa.gov/prof/aoaprog/caregiver/caregiver.asp. Individuals who have long-term care policies also may be able to gain coverage for these services. The future major solutions lie in the realm of public health, public education, public policy, and research envisioned with the 2011 passage of the National Alzheimer's Project Act.

-- Nancy B. Emerson Lombardo

Further Readings

Alzheimer's Disease International. World Alzheimer Report 2010. http://preview.alz.org/documents/national/World_Alzheimer_Report_2010.pdf. Accessed July 8, 2011.

Arkin S Language-enriched exercise plus socialization slows cognitive decline in Alzheimer's patients. Am J Alzheimer's Dis Other Dement. 2007; vol. 22 no. (1): pp. 1-16.

Aronson MK Ooi WL Morgenstern H, et al. Women, myocardial infarction, and dementia in the very old. Neurology. 1990; vol. 40 no. (7): pp. 1102-1106.

Aton SJ Mechanisms of sleep-dependent consolidation of cortical plasticity. Neuron. 2009; vol. 61: pp. 454-466.

Ball K Berch DB Helmers KF, et al. Effects of cognitive training interventions with older adults a randomized controlled trial. JAMA. 2002; vol. 288 no. (18): pp. 2271-2281. doi:10.1001/jama.288.18.2271.

Bennett DA Schneider JA Wilson RS Bienias JL Arnold SE Neurofibrillary tangles mediate the association of amyloid load with clinical Alzheimer's disease and level of cognitive function. Arch Neurol. 2004; vol. 61: pp. 378-384.

Boyle PA Buchman AS Barnes LL Bennett DA Effect of a purpose in life on risk of incident Alzheimer disease and mild cognitive impairment in community-dwelling older persons. Arch Gen Psychiatry. 2010; vol. 67 no. (3): pp. 304-310.

Bruehl H Sweat V Hassenstab J Polyakov V Convit A Cognitive impairment in nondiabetic middle-aged and older adults is associated with insulin resistance. J Clin Exp Neuropsychol. 2010; vol. 32 no. (5): pp. 487-493.

Calon F Lim GP Yang F, et al. Docosahexaenoic acid protects from dendritic pathology in an AD mouse model. Neuron. 2004; vol. 43 no. (5): pp. 633-645.

Chan A Rogers E Shea TB Dietary deficiency in folate and vitamin E under conditions of oxidative stress increases phospho-tau levels: potentiation by APOE4 and alleviation by S-adenosylmethionine. J Alzheimers Dis. 2009; vol. 17 no. (3): pp. 483-487.

Chen H Chan DC Mitochondrial dynamics--fusion, fission, movement, and mitophagy-in neurodegenerative diseases. Hum Mol Genet. 2009; vol. 18: pp. R169-R176.

Clare L Woods RT Moniz-Cook ED Orrell M Spector A Cognitive rehabilitation and cognitive training for early-stage Alzheimer's disease and vascular dementia. Cochrane Database Syst Rev. 2003(4): pp. CD003260. doi:10.1002/14651858.CD003260.

Craft S Insulin resistance and Alzheimer's disease pathogenesis: potential mechanisms and implications for treatment. Curr Alzheimer Res. 2007; vol. 4 no. (2): pp. 147-152.

Csernansky JG Dong H Fagan AM, et al. Plasma cortisol and progression of dementia in subjects with Alzheimer-type dementia. Am J Psychiatry. 2006; vol. 163: pp. 2164-2169.

Emerson Lombardo NB Dresser MVB Malivert M, et al. Acupuncture as treatment for anxiety and depression in persons with dementia: results of a pilot feasibility and effectiveness study. Alzheimers Care Q. 2001; vol. 4 no. (2): pp. 28-41.

Emerson Lombardo NB Volicer L Auerbach SH Matson W Matson S Valla J Nutritional supplement combination therapy feasibility, safety and biomarker clinical trial in cognitively normal adults. J Nutr Health Aging. 2010; vol. 14 no. (9): pp. 800.

Emerson Lombardo NB Volicer L Martin A Wu B Zhang XW Memory preservation diet to reduce risk and slow progression of Alzheimer's disease. In: Vellas B, Grundman M, Feldman H, Fitten LJ, Winblad B, eds. Research and Practice in Alzheimer's Disease and Cognitive Decline ; 2006: pp. 138-159.

Erickson KI Voss MW Prakash RS, et al. Exercise training increases size of hippocampus and improves memory. Proc Natl Acad Sci U S A. 2011; vol. 108 no. (7): pp. 3017-3022.

Glass CK Sijo K Winner B Marachetto MC Gage FH Mechanisms underlying inflammation in neurodegeneration. Cell. 2010; vol. 140: pp. 918-934.

Gu Y Luchsinger JA Stern Y Scarmeas N Mediterranean diet, inflammatory and metabolic biomarkers, and risk of Alzheimer's disease. J Alzheimers Dis. 2010; vol. 22 no. (2): pp. 483-492.

Herrup K Reimagining Alzheimer's disease: an age-based hypothesis. J Neurosci. 2010; vol. 30 no. (50): pp. 16762-16755.

Heyn PC Johnson KE Kramer AF Endurance and strength training outcomes on cognitively impaired and cognitively intact older adults: a meta-analysis. J Nutr Health Aging. 2008; vol. 12 no. (6): pp. 401-409.

Holmes C Cunningham C Zotova E, et al. Systemic inflammation and disease progression in Alzheimer disease. Neurology. 2009; vol. 73 no. (10): pp. 768-774.

Hölzel BK Carmody J Vangel M, et al. Mindfulness practice leads to increases in regional brain gray matter density. Psychiatry Res. 2011; vol. 191 no. (1): pp. 36-43. doi:10.1016/j.pscychresns.2010.08.006.

Igbal K Grundke-Igbal I Alzheimer's disease, a multifactorial disorder seeking multi-therapies. Alzheimers Dement. 2010; vol. 6 no. (5): pp. 420-424.

Karp A Paillard-Borg S Wang H-X Silverstein M Winblad B Fratiglioni L Mental, physical and social components in common leisure activities in old age in relation to dementia: findings from the Kungsholmen Project. Neurobiol Aging. 2004; vol. 25 no. (S2): pp. S313.

Khachaturian ZS Revised criteria for diagnosis of Alzheimer's disease: National Institute on Aging-Alzheimer's Association diagnostic guidelines for Alzheimer's disease. Alzheimers Dement. 2011; vol. 7 no. (3): pp. 253-256. doi: 10.1016/j.jalz.2011.04.003.

Kounti F Bakoglidou E Agogiatou C Emerson Lombardo NB Serper LL Tsolaki M RHEA, a non pharmacological cognitive training intervention in patients with mild cognitive impairment (MCI): A pilot study. Topics in Geriatric Rehabilitation. In Press.

Luchsinger JA Reitz C Honig LS Tang M-X Shea S Mayeux R Aggregation of vascular risk factors and risk of incident Alzheimer disease. Neurology. 2005; vol. 65: pp. 545-551.

Mangialasche F Kivipelto M Mecocci P, et al. High plasma levels of vitamin E forms and reduced Alzheimer's disease risk in advanced age. J Alzheimers Disease. 2010; vol. 20 no. (4): pp. 1029-1037. doi:10.3233/JAD-2010-091450.

Milgram NW Head E Zicker SC, et al. Learning ability in aged beagle dogs is preserved by behavioral enrichment and dietary fortification: a two-year longitudinal study. Neurobiol Aging. 2005; vol. 26: pp. 77-90.

Morris MC Evans DA Bienias JL, et al. Dietary intake of antioxidant nutrients and the risk of incident Alzheimer disease in a Biracial Community study. JAMA. 2002; vol. 283 no. (24): pp. 3230-3237.

Remington R Chan A Paskavitz J Shea TB Efficacy of a vitamin/nutriceutical formulation for moderate-stage to later-stage Alzheimer's disease: a placebo-controlled pilot study. Am J Alzheimers Dis Other Demen. 2009; vol. 24 no. (1): pp. 27-33.

Rovio S Spulber G Nieminen LJ, et al. The effect of midlife physical activity on structural brain changes in the elderly. Neurobiol Aging. 2010; vol. 31 no. (11): pp. 1927-1936.

Scarmeas N Luchsinger JA Schupf N, et al. Physical activity, diet, and risk of Alzheimer disease. JAMA. 2009; vol. 302 no. (6): pp. 627-637.

Smith AD Smith SM de Jageri CA, et al. Homocysteine-lowering by B vitamins slows the rate of accelerated brain atrophy in mild cognitive impairment: a randomized controlled trial. PLoS ONE. 2010; vol. 5 no. (9): pp. e12244. http://www.plosone.org. Accessed July 8, 2011.

Tsolaki M Kounti F Agogiatou C, et al. Effectiveness of non-pharmacological approaches in patients with mild cognitive impairment. Neurodegener Dis. 2011; vol. 8: pp. 138-145. doi:10.1159/000320575.

Vellas B Lauque S Ousset PJ Poor nutritional status is a risk factor for rapid loss of Mini Mental State Examination (MMSE) in Alzheimer's patients: results of the Elsa Study. J Nutr Health Aging. 2004; vol. 8 no. (5): pp. 424-426.

Verghese J Lipton RB Katz MJ, et al. Leisure activities and the risk of dementia in the elderly. N Engl J Med. 2003; vol. 348: pp. 2508-2516.

Wan CY Schlaug G Making music as a tool for promoting brain plasticity across the life span. The Neuroscientist. 2010; vol. 16 no. (5): pp. 566-577.

Entry Citation:

Lombardo, Nancy B. Emerson. "Alzheimer's Disease." Encyclopedia of Lifestyle Medicine and Health. Ed. James M. Rippe, MD. Thousand Oaks, CA: SAGE, 2012. 120-42. (2 Volumes 1296 total pages)

SAGE Reference Online. Web. 29 Feb. 2012.

ATTACHMENT #2:

4.2.0. Memory and Cognitive Impact of Foods

Research is proceeding rapidly on the connection between diet, including individual nutrients, on memory and other aspects of our thinking.

Most of the research to date has examined how foods relate to memory and cognition. This research has consisted of either animal studies of specific foods or nutrients, or of epidemiological studies of large groups of people (which can show an association, but not prove a direct cause). These studies have explored the relationship between aspects of what we eat and the likelihood or risk of developing general cognitive problems, mild cognitive impairment (including of the amnestic type i.e. involving memory problems), any kind of dementia (i.e. problems in thinking in multiple areas serious enough to cause problems in daily life or work) or specific diseases such as Alzheimer's disease.

The mechanisms of action (for how specific foods might help or hurt the brain) identified to date appear to vary, and in the case of many whole foods, multiple actions could be working simultaneously (See for example, Emerson Lombardo NB et al. 2006, Sun AY et al 2008. Tian J et al 2010, Howes and Perry 2011, Williams RJ, 2011). Some ways specific foods could enhance brain health include increasing the availability of the memory neurotransmitter acetylcholine in the brain (apple juice, sage, Melissa, saffron) (e.g. by directly increasing production, slowing its metabolic breakdown, similar to the action of the cholinesterase inhibitors currently on the market), anti-oxidant and/or anti-inflammatory action, regulating amount of various forms of Abeta peptides, slowing or preventing oligomerization or fibrilization of the Abeta molecule (Wang 2008, Frydman-Marom, A.,2011), protecting omega-3 fatty acids in brain cell membranes or fatty acids, regulating blood sugar and insulin, and/or cholesterol, estrogenic effects that can be neuro-protective, promoting creation of new brain cells or connective parts, or slowing their destruction, improving neuronal signaling and synapse activity, restoring mitochondrial function (related to energy) of brain cells, and retarding tau pathology (the "other" problem protein in AD) (Green 2007) . This list is only partial!

The number of human clinical trials is still small but growing.

The body of evidence suggests a clear connection between foods, overall diet and our brain health, including memory and other cognitive skills such as attention and executive function (ability to organize and plan), and is growing each year.

This website and our brain healthy newsletters will keep you informed of this growing body of evidence.

Here are some highlights:

Several studies using various mouse models of Alzheimer's disease demonstrated the positive effects of a wide variety of food substances chosen for their believed health benefits such as strong anti-oxidant properties. Each food type may be comprised of thousands of nutrients. Foods tested that improved cognitive behaviors and/or lowered Abeta levels in TG mice include: apple juice, blueberries, spinach, strawberries, green tea, melatonin, DHA, plum juice, Concord grape juice, resveratrol, grape seed extract and others (Chan A et al, 2006, Rogers EJ et al.2004, Joseph JA. Et al. 1999, 2009, Lee JW, et al 2009, Mandel SA et al. 2011, Calon, F et al, 2004 and Green et al, 2007, Shukitt-Hale B et al, 2009, Shukitt-Hale B et al 2006, Lagouge, M., et al, 2006, Wang et al., 2008). Both almonds and walnuts helped Alzheimer transgenic mice perform better in cognitive tests and lowered levels of A-beta (Chauhan N et al. 2004, Muthaiyah B, et al, 2011 - no published citation for almonds- see continued work by Neelima Chauhan, PhD, of the University of Illinois-Chicago, as reported in 2005 by Society for Neuroscience. http://www.sfn.org/index.aspx?pagename=news_111405). An unrelated Indian study in aged rats reported almond paste reversed scopolamine-induced amnesia, reduced cholinesterase activity in the brain, and also significantly reduced cholesterol and triglycerides in these aged rats (Kulkarni KS, et al. 2010).

Epidemiological studies have also identified a long list of brain healthy foods. More recently, innovative studies have begun to identify GROUPS of foods that appear to reduce risk of cognitive decline and onset of dementia, MCI or Alzheimer's disease, such as foods typical of the Mediterranean diet (Féart, C et al 2009, Gu Y, et al 2009, Scarmeas N et al., 2006, 2009a, 2009b, or the DASH (Dietary Approaches to Stop Hypertension) Diet (LINK http://dashdiet.org/dash_diet_book.asp?google&gclid=CMDj8qOMsq0CFUTc4Aodvz0FlQ ) (see unpublished study led by Heidi Wengreen, RD, PhD, Assistant Professor of Nutrition at Utah State University).

Combination supplement studies are also gaining interest. Professor Thomas Shea, Ph.D., Director of the Cellular Neurobiology and Neurodegeneration Research Centerat U Mass Lowell (http://www.uml.edu/research_labs/Cellular_Neurobiology/Staff.html ) is examining, first in mice and now in humans with and without memory impairments, a combination of certain B vitamins, amino acids and anti-oxidants, with some encouraging results. Another study led by Jon Valla in Arizona uses a combination of fruit and vegetable powers, anti-inflammatory spices and herbs, and fish oil, yielding some positive results in TG mice. A similar combination with the addition of vitamin D is currently undergoing a pilot Phase I clinical trial with healthy older adults at Boston University. Also, Nutricia, a subsidiary of the French Danone Company, is pursuing human clinical trials in both Europe and the US, of Souvenaid® (http://souvenaid.com/) a combination of neuron building substrates identified (and patented) by Dr. Richard Wurtman at MIT, together with anti-oxidant isolated vitamins (Kamphuis and Scheltens, 2010), featured at a company sponsored symposium at MIT (http://web.mit.edu/newsoffice/2010/fighting-alzheimers.html). The consumer needs to be aware of the differences between medical foods such as Souvenaid, and nutritional supplements such as "Great Mind, as the rules of evidence and FDA regulations are different. The Alzheimer's Forum engaged in an excellent discussion of this topic in 2009, http://www.alzforum.org/new/detail.asp?id=2258

A Swedish placebo-controlled clinical trial using fish oil containing both DHA and EPA reported that fish oil appeared to slow cognitive decline only in a few persons with early stage Alzheimer's disease. In persons with mid stage disease the main positive effect was to reverse weight loss, which can be a serious problem in some people (Freund-Levi Y. et al, 2006). A larger, more recent clinical trial of just DHA derived from algae, in persons with AD, reported no significant effect on cognition; however the trial neglected to include EPA, the more highly anti-inflammatory long chain Omega 3 which, in nature, usually occurs in conjunction with DHA and which humans typically consume (and synthesize) along with DHA. Since other AD research has established that AD has an inflammatory aspect to its etiology, we believe that EPA may prove to be as important as DHA in its treatment and prevention. Also, psychiatric and attention-deficit disorders research has established that EPA rather than DHA appears to be the active long chain Omega 3 in achieving the desired treatment effect. See for example Jazayeri S, 2008 (http://www.ncbi.nlm.nih.gov/pubmed/18247193 ) and work by Andew Stoll, MD (http://www.amazon.com/Omega-3-Connection-Groundbreaking-Anti-depression-Program/dp/0684871386) and Ned Hollowell, MD. (http://www.amazon.com/Delivered-Distraction-Getting-Attention-Disorder/dp/034544230X).

Cinnamon helps lower cholesterol and blood sugar, is a potent anti-oxidant (see ORAC chart…link) and is anti-inflammatory, and thus through these 4 pathways is thought to be positive for brain health. A January 2011 publication of an animal study (transgenic mice and flies) by a group of Israeli scientists suggests that cinnamon may also have a positive direct brain effect - cinnamon helps retard the development of Alzheimer's pathology by preventing the oligomerization ("clumping") of single Abeta molecules, leading to toxic forms that kill brain cells (Frydman-Marom A). To learn more, see our newsletter on the topic (Link to Cinnamon newsletter CHANGE THIS TO NEW WEBSITE POSITION http://healthcareinsights.net/home/newsletter-2011/august-2011-newsletter/). Grape seed extract also prevents or slows oligomerization and fibrilization.

A proof of concept RCT in 12 older adults with MCI found significant improvements in one test of memory (verbal learning) in the 6 randomized to drinking Concord Grape Juice for 12 weeks (Krikorian R et al 2010).

Three small pilot randomized controlled studies of three different spices/herbs in Alzheimer's patients, all led by the same medical researcher in Iran, all published in reputable peer-reviewed journals, suggested positive effects in slowing cognitive decline compared to placebo (sage and lemon balm, also known as melissa) or slowing at same rate as a current prescription drug, without the usual gastro-intestinal side effects (saffron). (See Akhondzadeh, S. et al. 2003a, 2003b, 2010)

Diets high in sugar and/or saturated fats appear to be harmful for the brain. A preclinical study in AD transgenic mice demonstrated that simply spiking water with 10% sugar (while offering same healthy mouse chow to two groups of identical, randomized mice) resulted in speedier cognitive decline of the mice drinking the sugared water, higher levels of Abeta in the brain, and abnormal cholesterol levels. Cao D et al. 2007, Suzanne Craft group's proof of concept randomized clinical trial in 50 older adults for just 1 month demonstrated that a high glycemic index, high saturated/high fat diet, compared to a low glycemic, low saturated fat/low fat diet, resulted in significantly worse cognitive performance (using a visual memory test), and undesirable changes in levels of Abeta in cerebral spinal fluid. (Bayer-Carter JL et al. 2011).

References:

Akhondzadeh S, Shafiee Sabet M, Harirchian MH, Togha M, Cheraghmakani H, et al. A 22-week, multicenter, randomized, double-blind controlled trial of Crocus sativus in the treatment of mild-to-moderate Alzheimer's disease. Psychopharmacology (Berl). 2010 Jan; 207(4):637-43. Epub 2009 Oct 20.

Akhondzadeh S, Noroozian M, Mohammadi M, Ohadinia S, Jamshidi AH, Khani M. Salvia officinalis extract in the treatment of patients with mild to moderate Alzheimer's disease: a double blind, randomized and placebo-controlled trial. J Clin Pharm Ther. 2003 Feb;28(1):53-9.

Akhondzadeh S, Noroozian M, Mohammadi M, Ohadinia S, Jamshidi A, and Khani M. Melissa officinalis extract in the treatment of patients with mild to moderate Alzheimer's disease: a double blind, randomized, placebo controlled trial J Neurol Neurosurg Psychiatry. 2003 Jul;74(7):863-6.

Bayer-Carter JL, Green PS, Montine TJ, VanFossen B, Baker LD, Craft S, Diet Intervention and Cerebrospinal Fluid Biomarkers in Amnestic Mild Cognitive Impairment Arch Neurol. 2011;68(6):743-752. doi:10.1001/archneurol.2011.125

Calon, F., Lim, G.P., Yang, F., Morihara, T., Teter, B., Ubeda, O., Rostaing, P., Triller, A., Salem, Jr., N., Ashe, K.H., Frautschy, S.A., Cole, G.M., 2004. Docosahexaenoic acid protects from dendritic pathology in an Alzheimer's disease mouse model. Neuron. 43, 633-645.

Cao D, Lu H, Lewis TL, Li L. Intake of sucrose-sweetened water induces insulin resistance and exacerbates memory deficits and amyloidosis in a transgenic mouse model of Alzheimer disease. J Biol Chem, (2007) 282(50):36275-82. Epub 2007 Oct 17.

Chan A. Graves V. Shea TB. Apple juice concentrate maintains acetylcholine levels following dietary compromise. J Alz. Dis. 2006 9 (3) :287-91.

Chauhan N, Wang KC, Wegiel J, Malik MN. Walnut extract inhibits the fibrillization of amyloid beta-protein, and also defibrillizes its preformed fibrils. Curr Alzheimer Res. 2004 Aug;1(3):183-8.

Emerson Lombardo, N.B., Volicer L., Martin A., Wu B., Zhang X.W., 2006. Memory preservation diet to reduce risk and slow progression of Alzheimer's disease, in Vellas, B., Grundman, M., Feldman, H., Fitten, L.J., Winblad, B. (Eds.), Research and Practice in Alzheimer's Disease and Cognitive Decline, vol 9, pp. 138-59.

Féart, C., Samieri, C., Barberger-Gateau, P., et al. Or Féart C, Samieri C, Rondeau V, Amieva H, Portet F, Dartigues JF, Scarmeas N, Barberger-Gateau P. Adherence to a Mediterranean diet, cognitive decline, and risk of dementia JAMA 2009;302(6):638-648.

Freund-Levi Y, Eriksdotter-Jonhagen M, Cederholm T, Basun H, Faxen-Irving G, Palmblad J.et al. Omega-3 fatty acid treatment in 174 patients with mild to moderate Alzheimer disease: OmegAD study: a randomized double-blind trial. Arch Neurol 2006 63(10): 1402-8.

Frydman-Marom A, Levin A, Farfara D, Benromano T, Scherzer-Attali R, Peled S, Vassar R, Segal D, Gazit E, Frenkel D, Ovadia M. Orally administrated cinnamon extract reduces ?-amyloid oligomerization and corrects cognitive impairment in Alzheimer's disease animal models. PLoS One. 2011 Jan 28;6(1):e16564

Green, K.N., Martinez-Coria, H., Khashwji, H., Hall, E.B., Yurko-Mauro, K.A., Ellis, L., LaFerla, F.M., 2007. Dietary docosahexaenoic acid and docosapentaenoic acid ameliorate amyloid-? and tau pathology via a mechanism involving Presenilin 1 levels. J Neurosci. 27(16), 4385-4395.

Gu Y, Luchsinger JA, Stern Y, Scarmeas N. Mediterranean diet, inflammatory and metabolic biomarkers, and risk of Alzheimer's disease. J Alzheimer's Dis. (2010) 22(2):483-92.

Howes MJ, Perry E. The role of phytochemicals in the treatment and prevention of dementia. Drugs Aging. 2011 Jun 1;28(6):439-68. doi: 10.2165/11591310-000000000-00000.

Jazayeri S, Tehrani-Doost M, Keshavarz SA, Hosseini M, Djazayery A, Amini H, Jalali M, Peet M. Comparison of therapeutic effects of omega-3 fatty acid eicosapentaenoic acid and fluoxetine, separately and in combination, in major depressive disorder Aust N Z J Psychiatry. 2008 Mar;42(3):192-8

Joseph JA. Shukitt-Hale B. Casadesus G. Reversing the deleterious effects of aging on neuronal communication and behavior: beneficial properties of fruit polyphenolic compounds. [Review] [62 refs] Am J Clin Nutr. 2005 81(1 Suppl):313S-316S.

Joseph JA, Shukitt-Hale B, Denisova NA, Martin A, et al. Reversals of age-related declines in neuronal signal transduction, cognitive, and motor behavioral deficits with blueberry, spinach, or strawberry dietary supplementation. J-Neurosc:1999 19(18): 8114-8121.

Kamphuis, P.J.G.H., Scheltens, P., 2010. Can nutrients prevent or delay onset of Alzheimer's disease? J Alzheimer's Dis. 20, 765-775.

Krikorian R, Nash TA, Shidler MD, Shukitt-Hale B, Joseph JA. Concord grape juice supplementation improves memory function in older adults with mild cognitive impairment. Br J Nutr. 2010 Mar;103(5):730-4. Epub 2009 Dec 23.

Kulkarni KS, Kasture SB, Mengi SA. Efficacy study of Prunus amygdalus (almond) nuts in scopolamine-induced amnesia in rats. Indian J Pharmacol. 2010 Jun;42(3):168-73.

Lagouge, M., Argmann, C., Gerhart-Hines, Z., Meziane, H., Lerin, C. Daussin, F., Messadeq, N., Milne, J., Lambert, P., Elliott, P., Geny, B., Laakso, M., Puigserver, P., Auwerx, J., 2006. Resveratrol improves mitochondrial function and protects against metabolic disease by activating SIRT1 and PGC-1a. Cell. 127, 1109-1122.

Lee JW, Lee YK, Ban JO, Ha TY, Yun YP, Han SB, Oh KW, Hong JT. Green tea (-)-epigallocatechin-3-gallate inhibits beta-amyloid-induced cognitive dysfunction through modification of secretase activity via inhibition of ERK and NF-kappaB pathways in mice. J Nutr. 2009 Oct;139(10):1987-93. Epub 2009 Aug 5.

Mandel SA, Amit T, Weinreb O, Youdim MB. Understanding the broad-spectrum neuroprotective action profile of green tea polyphenols in aging and neurodegenerative diseases. J Alzheimer's Dis. 2011;25(2):187-208.

Muthaiyah B, Essa MM, Chauhan V, Chauhan A. Protective effects of walnut extract against amyloid beta peptide-induced cell death and oxidative stress in PC12 cells. Neurochem Res. 2011 Nov;36(11):2096-103. Epub 2011 Jun 25.

Rogers EJ, Mihalick S, Ortiz D and Shea TB. Apple juice prevents oxidative stress and impaired cognitive performance caused by genetic and dietary deficiencies in mice. J Nutr Health & Aging. 2004 8:92-7.

Scarmeas N, Luchsinger JA, Schupf N, Brickman AM, Cosentino S, Tang MX, Stern Y. Physical activity, diet, and risk of Alzheimer disease. JAMA 2009b;302(6):627-637.

Scarmeas N, Stern Y, Tang MX, Mayeux R, Luchsinger JA. Mediterranean diet and risk for Alzheimer's disease. Ann Neurol Apr 18;2006 59(6):912-921. [PubMed: 16622828]

Scarmeas N, Stern Y, Mayeux R, Manly JJ, Schupf N, Luchsinger JA. Mediterranean diet and mild cognitive impairment. Arch Neurol. 2009a Feb;66(2):216-25.

Shukitt-Hale B, Kalt W, Carey AN, Vinqvist-Tymchuk M, McDonald J, Joseph JA. Plum juice, but not dried plum powder, is effective in mitigating cognitive deficits in aged rats. Nutrition. 2009 May;25(5):567-73. Epub 2008 Dec 18.

Shukitt-Hale B, Carey A, Simon L, Mark DA, Joseph JA. Effects of Concord grape juice on cognitive and motor deficits in aging. Nutrition. 2006 Mar;22(3):295-302. Epub 2006 Jan 18.

Sun AY, Wang Q, Simonyi A, Sun GY. Botanical phenolics and brain health. Neuromolecular Med. 2008;10(4):259-74. Epub 2008 Nov 1.

Tian J, Shi J, Zhang X, Wang Y. Herbal therapy: a new pathway for the treatment of Alzheimer's disease. Alzheimer's Res Ther. 2010 Oct 22;2(5):30.

Wang, J., Ho, L., Zhao, W., Ono, K., Rosenweig, C., Chen, L., Humala, N., Teplow, D.B., Pasinetti, G.M., 2008. Grape-derived polyphenolics prevent Aß oligomerization and attenuate cognitive deterioration in a mouse model of Alzheimer's disease. J Neurosci. 28(25), 6388-6992.

Williams RJ, Spencer JP. Flavonoids, cognition, and dementia: Actions, mechanisms, and potential therapeutic utility for Alzheimer disease. Free Radic Biol Med. 2011 Sep 17. [Epub ahead of print]

 

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Adult Day Care for Alzheimer's

My wish would be that all persons with Alzheimer's could have a safe haven. This would be a great benefit for all family members that have this disease in their lives. I hope we can get something past that will give them a safe haven.

Sincerely,

Valecia Floyd

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Comments from the Pennsylvania Department of Aging

Attached please find comments from the Pennsylvania Department of Aging on the Draft National Plan to Address Alzheimer's Disease.

We are grateful for the opportunity to offer comments.

Pennsylvania is a state with an increasing population of older persons and is home to persons and families living with Alzheimer's Disease.

The Commonwealth is also home to leading researchers and providers of care across the continuum.

We look forward to opportunities to join in the dialogue and planning process.

Please let me know if we can offer any further information or clarification.

Thank you.

Sincerely,

Brian M. DukeSecretaryCommonwealth of PennsylvaniaDepartment of AgingHarrisburg, PA

ATTACHMENT:

On behalf of the Pennsylvania Department of Aging, I am respectively submitting comments on the Draft National Plan (Plan) to Address Alzheimer's Disease. In general, I believe the Plan is well timed, comprehensive, and ambitious and our Department supports the Plan. Accomplishing the Plan goals will require collaboration with many different service systems, and the Department of Health & Human Services will likely face challenges in coordinating efforts across these systems.

While achieving the vision of eliminating Alzheimer's Disease (AD) by 2025 is the ultimate goal, the immediate need is appropriate care for those with AD and relief for caregivers. Further, research needs to be expanded into areas that are supportive to caregiving. The Plan should also address the issues and propose solutions of excess deficits that cause unneeded anguish to both the person with dementia and their formal and information caregivers.

Because of the scope and complexity of needs of those with dementia, I believe it is helpful to prioritize those areas of need. First and foremost, there is a wealth of knowledge that enables clinicians to diagnose and treat persons with memory disorders. However, the greatest need is gavubg adequately trained physicians to diagnose and provide care for dementia residents. This issue isn't new; it has been known for the past 10 years. With only 7,162 trained geriatricians in the country or one geriatrician for every 2,620 residents over 75 years of age, there isn't an adequate supply of geriatricians to provide geriatric educational needs among the US medical schools.

There is discussion in the draft plan about the need to expand and prioritize research aimed at developing new pharmacological interventions for preventing and treating Alzheimer's Disease. There is also some mention about reducing the use of antipsychotic medications for treating the symptoms of AD in institutional settings. Both of these action items are laudable. What is missing is a recommendation to reduce the current widespread, wasteful and in some cases harmful, overuse and misuse of the cholinesterase inhibitors and related combination therapies in treating AD. Practice guidelines for cost effective and efficacious pharmacological interventions in the treatment of AD are available but not widely adhered to.

In Pennsylvania, there discussions are currently being held about the Behavioral Risk Factors Surveillance System. Numbers of people are not now being identified; therefore a module asking respondents if someone in their home has dementia and the follow-ups would greatly help us identify the numbers outside of proper care, care-home settings, etc., that currently suffer dementias.

For your consideration, together with the above general recommendations, I respectively offer more specific comments. For example, although the Plan makes mention of emergency rooms, there needs to be "best practice" models that are shared with the thousands of hospital emergency rooms in the US. In addition, I propose these suggestions on specific goals, strategies, and actions:

Strategy 1.E: This priority deals with translating findings into medical practice and public health programs. There should be a separate action item that addresses the shortcomings in the current pharmacological treatment of AD and guidance to prescribers on how to remedy this problem.

Action 1.A.1: This priority is not just important, it is essential if we expect to slow progress, delay onset and prevent AD. It needs to be a collaborative effort that is international in scope (Strategy 1.D) with high level commitment and energy that includes public and private resources and their networks interconnected. Money for research alone will not achieve what is needed. We need to look at past models of disease threats like tuberculosis, polio and HIV that had a grass roots demand for a cure.

Action 1.B.3: This is also essential; we need some fast "wins" through medical research that energize the world-wide community committed to eliminating dementia illnesses. And, in addition to expanding the enrollment of all racial and ethnic populations, we need to have several drug investigations on an urgent fast-track that not only give people hope but the belief that we are doing everything possible to get these issues under control.

Action 1.E.3: ADEAR (Alzheimer's Disease Education and Referral) needs to be a more widespread publically funded resource; there needs to be, for example, posters advertising it in post offices, libraries, and other public spaces.

Goal 2: The lack of adequately trained providers is addressed by dedicating "6 million dollars over two years for provider education and outreach." This is a limited amount of money to fix the national issue of solving the access to care issue with competent geriatricians. Further, there needs to be expanded roles for Advance Practice Registered Nurses in geriatric care.

Strategy 2.A: This strategy has a direct connection to PDA programs. PDA has done some work through the Long-Term Living Training Institute and Direct-Care Worker initiatives around educating and strengthening the direct care workforce to ensure workers are dementia-capable. PDA would welcome additional support in this area.

Action 2.A.4: PDA supports this action and sees the need for additional resources to train more direct workers in nursing homes and professionals that provide services in home and community based settings. PDA has provided funding to the Delaware Valley Alzheimer's Association to provide dementia specific training to those professionals that provide in-home care. The training is designed to improve care techniques that can be directly applied to day-to-day care in the home which can reduce the stress and burden on both professionals and family caregivers.

Strategies 2.C and 3.B: Contained in Pennsylvania's assessment for services for older adults is a 24-question assessment of caregiver status and needs. PDA would be interested to learn what other states are using and their best practices in terms of caregiver assessment instruments.

Action 2.H: PDA supports this action and sees the need for additional resources to improve care for certain populations, specifically those with intellectual disabilities. PDA currently co-chairs the Joint Committee on Aging & Intellectual Disabilities (ID) with the Office of Developmental Programs. The committee was formed to improve services and supports available to older persons with ID by working together through interagency coordination and collaboration. As the number of people aging with ID continues to grow, education for both professionals and caregivers along with proper supports should be a focus and be given special consideration to ensure the proper care for this population.

Strategy 3.E: PDA supports this action and sees a great need for increased housing options for individuals with AD. Affordable, safe housing is a special problem during the early to middle stages of the disease for individuals who live alone and do not have informal caregivers to provide support.

Strategies 4.A and 4.B: Public awareness campaigns and pooling/compiling resources should be organized around a single, nationally recognized association/entity related to Alzheimer's disease.

In conclusion, some components of the Plan have a direct connection to PDA programs, such as support of caregivers and enhancing the knowledge of direct care workers. Other components of the Plan such as methods for diagnosis, direct treatment, and research, do not have a direct connection to our programs. However, as I stated above, our Department supports the Plan and, while recognizing that there is no one quick, easy solution to dealing with such wide, complex needs, I feel my comments and suggestions are important for improving the Plan and thereby improving the lives of those with Alzheimer's Disease and their families and caregivers.

I thank you for the opportunity to provide input and look forward to hearing from you regarding my comments.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Comments on the National Plan to Address Alzheimer's Disease

Please accept this comment letter on behalf of the Partnership to Fight Chronic Disease.

Many thanks --

Candace DeMatteisPolicy DirectorPartnership to Fight Chronic Diseasehttp://www.fightchronicdisease.org

ATTACHMENT:   March 2012 Draft Comments on National Plan to Address Alz Disease Final.docx

Available as separate links:
Comments on Draft National Plan/pdf-document/partnership-fight-chronic-disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  EWA Comments on Draft National Plan

Thank you for the opportunity to provide comments on the Draft National Plan to Address Alzheimer's Disease. We appreciate the work of the Advisory Council and the recognition of the need for a well-trained workforce.

If you have any questions, please do not hesitate to contact me.

Best,

Caitlin ConnollyProject ManagerEldercare Workforce Alliancehttp://www.eldercareworkforce.org

ATTACHMENT:   EWA Comments on Draft Plan- 033012 - FINAL.pdf

Available as separate links:
Comments on the Draft National PlanEldercare Workforce Alliance

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  AOTA Comments re Draft National Plan to Address Alzheimer's Disease

Attached please find comments from the American Occupational Therapy Association (AOTA) in response to the US Department of Health and Human Services ' Draft National Plan to address Alzheimer's Disease pursuant to the National Alzheimer's Project Act (NAPA). Should you have any questions or need additional documentation, please do not hesitate to contact me.

Sincerely,

Jennifer Hitchon, JD, MHARegulatory CounselAmerican Occupational Therapy AssociationBethesda, MD

ATTACHMENT:   AOTA Comments re Draft Natl Plan to Address Alzhiemers Disease (March 30, 2012).pdf

Available as separate links:
Draft National Plan to Address Alzheimer's Disease CommentsRe: Draft National Plan to Address Alzheimer’s Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Comments of the Alzheimer's Association on the Draft National Plan to Access Alzheimer's Disease

Thank you for the opportunity to comment on the Draft National Plan to Address Alzheimer's Disease. The comments of the Alzheimer's Association are attached.

If you wish to discuss this or any other Alzheimer's issue, please feel free to reach out to Rachel Conant, Alzheimer's Association Director of Federal Affairs.

Best,

Christopher J AdamecSpecialist, Federal AffairsAlzheimer's AssociationPublic Policy OfficeWashington, DC

ATTACHMENT:   Alzhiemers Association comments on the Draft National Alzheimer's Plan.pdf

Available as separate links:
Alzheimer's Association comments on the Draft National Plan to Address Alzheimer's Diseasealzheimer's association

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  American Geriatrics Society Comments on Draft National Plan to Address Alzheimer's

Please accept the attached comments from the American Geriatrics Society on the Draft National Plan to address Alzheimer's disease. Should you have any questions, please don't hesitate to get in touch.

Sincere Regards,

Alanna Goldstein, MPHAssistant Director, Public Affairs & AdvocacyThe American Geriatrics SocietyNew York, NY

ATTACHMENT:   AGS Comments on National Alzheimer's Plan FINAL.pdf

Available as separate links:
Comments on National Alzheimer's Project Act (NAPA) - Draft National Plan to Address Alzheimer's DiseaseThe Ameican Geriatrics Society - RE: Comments on National Alzheimer’s Project Act (NAPA) ‐ Draft National Plan to Address Alzheimer’s Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Society of Nuclear Medicine's Comments on the National Alzheimer's Plan

On behalf of Dr. George Segall, President, please find attached the Society of Nuclear Medicine's comments on the National Plan To Address Alzheimer's Disease.

Respectfully,

Saima K. Hedrick, MPHSNMAdvancing Molecular Imaging & TherapyAssociate Manager of Outreachhttp://www.snm.orghttp://www.snm.org/cmiithttp://www.discovermi.org

ATTACHMENT:   Society of Nuclear Medicine_Comments on the National Plan for Alzheimer's_3_30_12.pdf

Available as separate links:
Society of Nuclear Medicine CommentsSociety of Nuclear Medicine

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  NAPA feedback

Here is the feedback from the UCI group.

Sincerely,

Frank M. LaFerla, Ph.D.Chancellor's ProfessorChair, Neurobiology and BehaviorDirector, Institute for Memory Impairments and Neurological DisordersUniversity of California, IrvineIrvine, CA http://neurobiology.uci.edu/faculty/laferla/

ATTACHMENT:   UCI NAPA questionnaire 2 2012[1].pdf

Available as separate links:
Questions for the ADC Directors -- National Alzheimer's Project ActNational Alzheimer’s Project Act

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Mental Health America Comments on Draft National Alzheimer's Plan

Attached is the comments letter from David Shern.

Regards,

F. Michael KingExecutive Office Assistant to David L. Shern, Ph.D., President and CEOMental Health AmericaAlexandria, VA

ATTACHMENT:   Helen Lamont, Ph.D. - Alzheimer's Plan.pdf

Available as separate links:
Mental Health American Comments on Draft National Alzheimer's PlanMental Health America Comments on Dra ft National Alzheimer’s Plan

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Fw: Comments have been submitted

As I mentioned, there is now an Industry Working group on Alzheimer's supportive of the 2025 goal. I will be working to expand the size of this group in the coming months so that HHS has a strong partner in executing our National Plan. Here are their comments on the draft plan.

George Vradenburg

==========

From: Manetto, Nicholas P.Sent: Fri, 30 Mar 2012 18:32:09 +0000Subject: FW: Comments have been submitted

Patrick --

Attached is a set of comments submitted on the draft plan by the Ad Hoc Industry Working Group

ATTACHMENT:   Industry Working Group Comments to NAPA.PDF

Available as separate links:
Comments on Draft National PlanIndustry Working Group on Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  NDSS NAPA Letter

On behalf of the National Down Syndrome Society (NDSS), please find our letter (attached) commenting on the "National Plan" to address Alzheimer's disease and related dementias (ADRD). Please do not hesitate to contact us with any questions.

We look forward to hearing from you.

Sincerely,

Sara Hart WeirVice President, Advocacy & Affiliate RelationsNational Down Syndrome SocietyWashington, DC

ATTACHMENT:   NDSS NAPA Letter FINAL.pdf

Available as separate links:
Comments on Draft National PlanNDSS

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  NYS Office for the Aging Comments on the Draft Framework for the National Plan to Address Alzheimer's Disease

Attached are comments from the NYS Office for the Aging on the above subject matter. If you have any questions, please feel free to email me or call me.

Thank you,

Greg Olsen, MSWActing DirectorNew York State Office for the AgingAlbany NY

ATTACHMENT:   National Plan to Address Alzheimer's Disease.docx

Available as separate links:
New York State Office for the Aging comments on the Draft Framework for the National Plan to Address Alzheimer's DiseaseNew York State Office for the Aging Memorandum

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Fw: Comments on Draft National Plan

George Vradenburg

==========

From: LEAD CoalitionSent: Fri, 30 Mar 2012 14:17:10 -0400Subject: Comments on Draft National Plan

Attached please find comments from Leaders Engaged on Alzheimer's Disease (LEAD) on the draft National Plan. Please do not hesitate to contact me if you have any questions.

Patrick FritzProject ManagerLEAD

ATTACHMENT:   LEAD Comments on NAPA Draft National Plan.pdf   data standards appendix2.pdf   Informed consent appendix1.pdf   Public Private Partnerships appendix 3.pdf

Available as separate links:
Comments on Draft National PlanLEAD Comments on Draft National Plan
Data Standards CommentsData Standards
Common Informed Consent Form for AD Clinical Studies CommentsCommon informed consent form for AD clinical studies
Making the Case for Public Private Partnerships for NAPAMaking the case for Public Private Partnerships for NAPA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  RE: Industry Working Group Comments

Thanks Mike! I will advise the whole group.

Nicholas P. Manetto

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From: James Michael Simmons JrSent: Friday, March 30, 2012 2:23 PMSubject: Industry Working Group Comments

Please find attached comments from an industry working group regarding the current draft of the National plan.

Mike SimmonsDirector, Global Advocacy and Professional RelationsEli Lilly and Company Corporate Affairs

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DATE:  March 30, 2012

SUBJECT:  Industry Working Group Comments

Please find attached comments from an industry working group regarding the current draft of the National plan.

Mike SimmonsDirector, Global Advocacy and Professional RelationsEli Lilly and Company Corporate Affairs

ATTACHMENT:   Industry Working Group Comments to NAPA.pdf

Available as separate links:
Comments on Draft National PlanIndustry Working Group on Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Alzheimer's Disease International response to NAPA

Alzheimer's Disease International is the worldwide federation of 78 national Alzheimer associations. Attached you may find a letter with our comments to the draft NAPA Act for your consideration.

I have also attached an overview of previous publications by the World Health Organization (WHO) that have any relationship with Alzheimer's disease and related disorders. The WHO will come out with a comprehensive report on 11 April.

Thanks very much,

Marc WortmannExecutive directorAlzheimer's Disease International Londonhttp://www.alz.co.ukhttp://www.adi2012.org

ATTACHMENT:   ADI comments to NAPA - March2012.pdf   ADRD WHO publications summary chart.pdf

Available as separate links:
Comments on Draft National PlanAlzheimer's Disease International Comments on Draft National Plan
Summary of PublicationsAlzheimer's Disease International Information Table

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  My grandmother

Currently lies in bed at the home she's lived in for many years with my grandfather. I remember christmas with her, going over for sunday breakfast. She helped me study for school. Looked after me when I was small.

Now all she can do all day is lay in her bed and stare at the ceiling. She doesn't remember more then 5 minutes at a time. Gone are all the things I used to love about going to that house, and my poor grandfather has to take care of her, pay for her medical bills and do his best for her even though she's only a shell of his wife. A shell of the once-strong woman who beat cancer numerous times only to have her life taken from her slowly and minutes at a time.

Alzheimer's took my grandmother from me, and I want to support development and research on curing this horrible problem so others don't have to see their families hurt like mine does.

Sincerely,

Sam LanganBrooklyn, NY

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  AAGP's Comments on Draft National Plan to Address Alzheimer's Disease

Please note the attached document is the American Association for Geriatric Psychiatry's comments on the Draft National Plan to Address Alzheimer's Disease. If you have any questions, please don't hesitate to contact me at:

Christine M. deVriesChief Executive Officer/Executive Vice-PresidentAmerican Association for Geriatric PsychiatryBethesda, MD

ATTACHMENT:   AAGP Comments on Draft National Plan for AD.pdf

Available as separate links:
Comments on Draft National PlanAmerican Association for Geriatric Psychiatry on Draft National Plan

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  AFTD Comments on draft National Plan to Address Alzheimer's Disease

Attached please find comments on the draft plan from the Association for Frontotemporal Degeneration.

We appreciate the opportunity to offer our input on this important project.

Matthew F. Sharp, M.S.SProgram CoordinatorThe Association for Frontotemporal Degenerationhttp://www.theaftd.org

ATTACHMENT:   AFTD reply to Alzheimer's Plan.pdf

Available as separate links:
Association for Frontotemporal Degeneration Comments on the Draft Framework for the National Plan to Address Alzheimer's DiseaseThe Association for Frontotemporal Degeneration

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  AstraZeneca Comments on Draft Framework on the National Plan to Address Alzheimer's Disease

Attached please find feedback from AstraZeneca Pharmaceuticals LP on the Draft Framework of the National Plan to Address Alzheimer's Disease. We thank you in advance for your consideration.

Please do not hesitate to contact us if you have any questions.

Kind regards,

Alice L. PomponioLeader, Americas Science RelationsAstraZenecaWaltham, MA

ATTACHMENT:   20120330 AstraZeneca NAPA Comments.pdf

Available as separate links:
Comments on Draft Framework of the National Plan to Address Alzheimer's DiseaseAstraZeneca - Re: Comments on Draft Framework of the National Plan to Address Alzheimer’s Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Response to Draft National Alzheimer's Plan

Please find attached comments on the draft National Alzheimer's Plan from the Geriatric Mental Health Alliance of New York. Thank you for the opportunity to comment.

Regards,

Kimberly WilliamsDirectorGeriatric Mental Health Alliance of New York

ATTACHMENT:   GMHA Comments on Draft National Alzheimer's Plan.docx

Available as separate links:
Geriatric Mental Health Alliance of New York Comments on the Draft National Plan to Address Alzheimer's DiseaseThe Geriatric Mental Health Alliance of New York

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  BMS Comments on NAPA

Bristol-Myers Squibb is pleased to submit the following comments on the Draft Framework for the National Plan to Address Alzheimer's Disease, released by the Assistant Secretary for Planning and Evaluation on January 9, 2012.

We recommend that the Plan include these additional elements:

Goal 1: Prevent and Effectively Treat Alzheimer's Disease by 2025

  1. Identify Alzheimer's Disease (AD) as a multidecade process eventuating in predementia symptoms and the functional impairments of dementia
  2. Recognize biomarkers as key to diagnosis and treatment
    1. Support partnerships advancing biomarker development and qualification
    2. Develop medical infrastructure for clinical use of biomarkers
    3. Set access standards to ensure access to biomarkers in clinical practice
  3. Ensure that diagnosis and treatment algorithms reflect patient differences, to support individualized treatment for each patient
  4. Promote partnerships of government, academe, industry, and advocacy groups, to foster patient recruitment and AD treatment development programs
  5. Examine routes to both accelerate development of acute treatments, learning from the HIV model, and to support long-term prevention studies.

Goal 2: Enhance Care Quality and Efficiency

  1. Establish the optimum age and tests for cognitive screening for all primary care patients.
  2. Evaluate the deployment of specialized memory clinics for early diagnosis, treatment, and clinical trial enrollment, as deployed in other countries
  3. Ensure incentives are in place to secure a sufficient supply of qualified professional and paraprofessional care staff
  4. Ensure access to innovative therapies for AD
    1. Provide comprehensive coding, coverage, and payment for new methods of preventing, diagnosing, and treating Alzheimer's disease at the predementia and dementia stages
    2. Ensure new clinical evidence is adopted into coverage and payment policies in a timely manner so that access and reimbursement is available for advanced treatment options and improved diagnostic tools
    3. Encourage adoption of new approaches to care, such as use of telehealth and increased participation in care by family members and caretakers

Goal 3: Expand Supports for People with Alzheimer's Disease and Their Families

  1. Develop and promote care infrastructure, financial planning, and behavior management strategies to support patients in their homes and in residential care.

Goal 4: Enhance Public Awareness and Engagement

  1. Foster AD understanding in a campaign educating payers, patients, families, and health care professionals to recognize and overcome stigma related to AD.

Goal 5: Improve Data to Track Progress

  1. Announce metrics, measureable annual goals and report on them.

We would be happy to expand on these suggestions for improving the Draft Framework to better address the social and medical needs of Americans who have Alzheimer's disease and their families. Please contact me if you would us to provide any additional information.

Yours truly,

Dr Jane Tiller MBChB, FRCPsych, MBA, MPhilVP GDMABristol-Myers Squibb CoPrinceton, NJ

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Letter to Dr. Helen Lamont Advisory Council on Alzheimer's Research, Care, and Services

On behalf of the Area Planning and Services Committee (APSC) on Aging with Lifelong Disabilities, I am sending a letter in response to the Draft National Plan to Address Alzheimer's Disease. We appreciate the opportunity to contribute our thoughts and congratulate you and the council on its initiative. Best wishes,

Edward F. Ansello, Ph.D. Director Virginia Center on Aging Virginia Commonwealth University Richmond, VA

ATTACHMENT:   APSC letter to Advisory Council on Alzheimer's Research.pdf

Available as separate links:
Comments on Draft National PlanVirginia Center on Aging Comments on Draft National Plan

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  CMS removal of Alzheimer's disease as a condition that can be treated with a Health Behavior Intervention

Until sometime early in 2010, patients suffering from Alzheimer's disease were allowed to receive treatment from a psychologist, in the form of a Health and Behavior Intervention Such procedures are used to modify the psychological, behavioral, emotional, cognitive, and social factors identified as important to or directly affecting the patient's physiological functioning, health and well being, or specific disease-related problems. Parkinson's disease and other chronic neurodegenerative conditions still meet criteria for medical necessity, while Azheimer's disease was removed from the list of treatable conditions. While Dementia, Alzheimer's type, or other dementias would not be appropriate to treat with a Health and Behavior Intervention, due to the patient's more severe cognitive impairment, that is not the case for patient with early- mid stage Alzheimer's disease. Advocacy is needed to ensure that these individuals who suffer for years in early stage A.D. are not deprived of the psychological support that patients with other neurodegenerative conditions are provided.

Sincerely,

Bruce Brotter, PhD

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  NAPA comments from the CT Chapter of the Alzheimer's Association

Please accept the attached comments on behalf of the Alzheimer's Association, CT Chapter. If you have any questions or concerns, please feel free to contact me.

Laurie Julian, J.D., M.P.H.Director of Public PolicyConnecticut ChapterAlzheimer's AssociationRocky Hill, CT

ATTACHMENT:   NAPA Comments 3-30-12 w edits.docx

Available as separate links:
National Alzheimer's Project Act CommentsNational Alzheimer's Project Act

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Comments on National Plan to Address Alzheimer's Disease

2.F. Advance Coordinated and Integrated Health and Long-term Care Services and Supports for Individuals Living with Alzheimer's Disease

The Program of All-inclusive Care for the Elderly (PACE) is an outstanding model of care for persons living with Alzheimer's Disease and other memory disorders. As high as two thirds of the PACE participants have cognitive impairment. Utilizing an interdisciplinary team, PACE provides comprehensive, coordinated and integrated care to individuals age 55 and older who meet the nursing home level of care criteria. The goal is to maintain the individual in a non-instituional setting for as long as possible. This program is a three way agreement between the PACE organization, CMS and the state Medicaid agency. Although PACE is currently serving 22,000 individuals nationally, the plan is to significantly increase this program. Research supports the efficacy of this model and should be referenced in your plan.

3.B. Enable Family Caregivers to Continue to Provide Care While Maintaining Their Own Health and Well-Being

More funding is needed for individuals on Medicare that need in-home care. My father was diagnosed with dementia in September of 2010 and passed away in April 2011. During his illness, my mother had to pay out of pocket for three attendants because he did not qualify for Medicaid until the end of his life. The process took several months before a determination was made by the Medicaid Long Term Care Office. Finally, one month before his death, he was deemed eligible with a share of cost. The experience was very challenging for all our family. Moreover, funding for caregiver resources and support have been drastically cut by the State of California. This makes no sense with the anticipated increase of persons with Alzheimer's Disease and other long term illnesses. The federal government needs to step in and assess what states are doing to help caregivers. Otherwise, vulnerable populations will continue to be adversely impacted. It is important for federal entities such as CMS, HRSA and AOA to work together to address these issues and to identify the funding that is vitally needed by families across the nation.

The Napa Advisory Council has been doing excellent work to develop a comprehensive plan that addresses the nationwide epidemic of Alzheimer's Disease

  • It is critical that this plan address the needs of the growing numbers of people living with this disease and their families
  • Several aspects of the plan focus on these issues but do not identify funding for implementation
  • The Alzheimer's Disease Supportive Services Program (ADSSP) which is also known and the Alzheimer's Disease Federal-State Matching Grants Program is the one federal program that has provided focused support for this population in local communities.
  • The NAPA report may want to reference AoA's support through the ADSSP program for sections of the plan including:
    • 2.C.2 Enhance assistance for people with AD and their caregivers to prepare for care needs
    • 2.H Improve care for populations disproportionately affected by Alzheimer's disease and for populations facing care challenges

Respectfully,

Marie S. Torres, Ph.D., L.C.S.W.Senior Vice President Government Relations and Community Research InitiativesAltaMed Health Services CorporationLos Angeles, CA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Draft Alzheimer's National Plan

I would like to thank the Advisory Committee for preparing an excellent draft plan. The Assisted Living Federation of America (ALFA) has submitted comments on a couple of occasions, but I would like to reiterate that our organization is a resource if HHS or the Advisory Committee would like to learn more about the role of licensed assisted living in meeting the needs of individuals with Alzheimer's and related dementia. Our providers have developed special programs that ensure residents have an improved quality of life along with quality of care. We believe these innovative programs should be used to replace the use of psychotropic and other medications that may not be needed. ALFA would just like to request that as the national plan looks ahead to helping individuals with dementia and their family and friends plan for the future, that assisted living be recognized as an appropriate and cost effective option. Thank you.

Maribeth BersaniSenior Vice President Public PolicyALFAAlexandria, VA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Alzheimer Research

I just came across an article stating that you are interested in ideas for understanding Alzheimers.

I have been a Clinical Psychologist and College Professor since 1950 and am interested both personally and professionally.

I try to follow the research and have attended regular conferences on Senile Dementia and it seems clear to me that medications have been minimally effective. So far physical exercise, mental stimulation and socialization have proven more effective. In working with older clients the concept of working with the positive-the resources you have -is more effective than focusing on what is lost. In addition meditative techniques are valuable in helping focus and concentration.

As medications seem so limited -it would seem very important to spend some research dollars and involvement in a broad spectrum approach to dealing with Senile Dementia.Thanks for your attention.

O.B.Leibman Ph.D.Professor EmeritusThe City University

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 30, 2012

SUBJECT:  Comments on Draft National Plan

Attached please find comments from Leaders Engaged on Alzheimer's Disease (LEAD) on the draft National Plan. Please do not hesitate to contact me if you have any questions.

Patrick FritzProject ManagerLEAD

ATTACHMENT:   LEAD Comments on NAPA Draft National Plan.pdf   data standards appendix2.pdf   Informed consent appendix1.pdf   Public Private Partnerships appendix 3.pdf

Available as separate links:
Comments on Draft National PlanLEAD Comments on Draft National Plan
Data Standards CommentsData Standards
Common Informed Consent Form for AD Clinical Studies CommentsCommon informed consent form for AD clinical studies
Making the Case for Public Private Partnerships for NAPAMaking the case for Public Private Partnerships for NAPA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Alzheimer's and Down syndrome

I would like to take this opportunity to comment on the Advisory Council on Alzheimer's Research, Care and Services draft national plan to address Alzheimer's disease. At the outset, let me express my appreciation and gratitude to everyone who is a part of this community: researchers, caregivers, affected individuals, and families who spend day in and day out caring for our loved ones.

I am providing these comments by way of my son Cole, who was born with an extra 21st chromosome. Since his birth, I have learned a great deal about the direct correlation between Down syndrome and Alzheimer's disease. For example, I have learned that Alzheimer's disease attacks adults with Down syndrome at a younger age and with increased frequency compared to the general population. I have also learned that the pathological findings of Alzheimer's disease have been described in the brains of people with Down syndrome since the 1800s and that there are genetic factors at play that, in part, explain these pathologic and clinical observations. I further understand that NIH is funding Down syndrome research using natural history and imaging techniques to identify early markers of cognitive decline. These studies will undoubtedly help people with Down syndrome, but they will also have a broader application to those individuals in the general population who are at risk for developing Alzheimer's disease.

Yet, there is so much more that can be learned from this relationship. I believe that both the Alzheimer's and Down syndrome communities would benefit greatly from additional conversations about this unique scientific correlation. To that end, I would encourage you to include a representative from the Down syndrome research community on the Advisory Council.

It has been just over one year since the National Alzheimer's Project was enacted. By recognizing the specific link between Down syndrome and Alzheimer's disease in the National Alzheimer's Project, the Council would be including all of the most current scientific data available. More importantly, millions of American's who are at risk for Alzheimer's disease will benefit from the research that is already underway in those with Down syndrome. This is truly a win-win for the entire community.

Sincerely,

Cathy McMorris RodgersMember of CongressU.S. House of RepresentativesWashington, DChttp://www.mcmorrisrodgers.house.gov

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  National Alzheimer's Project Act

Attached is a letter from Anne Hinton, Executive Director of the Department of Aging & Adult Services, City and County of San Francisco.

Thank you.

La Shaun WilliamsExecutive Assistant to Anne HintonDepartment of Aging and Adult ServicesSan Francisco, CA

ATTACHMENT:   NationalAlzheimers Project.doc

Available as separate links:
Comments on Draft National PlanDear Members of the NAPA Community Advisory Committee:

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Comments

I support health and well-being maintenance for family caregivers along with providing funding streams where feasible.

I support developing a plan to establish and include dementia appropriate adult day care services into the scope of long term services. This is much needed, and overdue.

Nancy Halealzheimer'sadvocate

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  social model day centers for senior adults

I would like to share with you about our social model, senior adult day center which is certified by the state of Kentucky and is the first social model that is private pay only in Kentucky:

I own Care4Ever Senior Care Center in Elizabethtown, KY. It opened July 1st, 2009 and we have experienced caring for several dementia participants since it opened and how exciting to experience families seeing their loved one with dementia participating in activities in the center, laughing, and being active. One activity so many of those with dementia have liked is the game "Corn Hole". What a simple game, but oh the fun, laughter and exercise that can be gained by that simple bean bag and a hole in a board! Our center was designed to be "like home" and it is comfortable, beautiful and very home-like. Nothing institutional here! I have talked with the VA in Louisville several times about using social model centers for veterans, but to no avail! Medical models are all they use and approve. My other company, Tender Touch Senior Services, which provides in-home, non-medical care to senior adults here in Elizabethtown, serving Hardin Co and the surrounding counties, is in the Homemaker Program with the VA and we go into the homes of nearly 45 veterans in our area and they would get so much more out of coming to the center combined with their homemaking and personal care in their home. My vision reaches so very far, with adult social model day centers, but I get frustrated because so very many people, as they are wearing out from caregiving, only look to nursing homes. We are trying to educate as many people as we can on the wonderful offerings of the social day center, but many times by the time the family gets their loved one with dementia to our center, it is only to buy time until they can place them into a facility. Our staff cries every time someone goes into a nursing home, because we can see that many times they are not ready to go into a facility, but the family is too worn out to even think.

Thanks for reading! I could go on and on!

Dona McCurryPresident/OwnerTender Touch Senior Services, Inc.Care4Ever Senior Care Center, Inc.http://www.care4everseniorcare.comhttp://www.tendertouchseniorservices.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Comments

We applaud the efforts of the Council and their Draft National Plan to Address Alzheimer's Disease. This Plan represents a major step forward in the development of a comprehensive strategy for addressing the impact of this devastating condition that affects millions of Americans and their families. At Genworth, we see the effect this disease has every day with our customers.

We were fortunate to have the opportunity to meet with Ms. Kathy Greenlee and her team on March 6 in Washington DC to discuss the effects of Alzheimer's and how families utilize care providers and services. At that meeting, Ms. Greenlee encouraged Genworth to comment on the NAPA. I have attached our comments in a letter from our Medical Director, Dr. Bruce Margolis.

Thank you for the opportunity to participate in this important work. Feel free to contact me if we can be of any additional assistance.

Michael D. HeardSVP, Business Strategy & Product SupportGenworth FinancialRichmond, VA

ATTACHMENT:   SRIC270B2F612032910380.pdf

Available as separate links:
Genworth Comments on the Draft National PlanGenworth Financial Comments on Draft National Plan

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  call to action letter

Attached you will find a letter urging that people with Down syndrome be included in the national plan to address Alzheimer's Disease.

Please let me know if you have any questions.

Thank you in advance for your attention,

Janet GoraExecutive DirectoriLearnCincinnati, OH

ATTACHMENT:   letter to alzresearchers.doc

Available as separate links:
Comments on Draft National Plan to Address Alzheimer's DiseaseDown Syndrome Association of Greater Cincinnati Comments on Draft National Plan

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Draft HHS National Plan to Address Alzheimer's Disease - National Academy of Neuropsychology comments

If it's not too much trouble could you please confirm receipt of this document via response to this e-mail message.

Thank you,

Tim Wynkoop, Ph.D., ABPPDiplomate, American Board of Clinical Neuropsychology (ABCN)Clinical Assistant Professor of PsychiatryUniversity of Toledo Medical Campus

Fellow & Past Program ChairCurrent Co-Chair, Professional Affairs & Information CommitteeNational Academy of Neuropsychology

ATTACHMENT:   Draft HHS National Plan to Address AD.pdf

Available as separate links:
Draft HHS National Plan to Address Alzheimer's Disease: Comments from the Professional Affairs & Information Committee, National Academy of NeuropsychologyNational Academy of Neuropsychology

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Comments for National Alzheimer's Plan

AgeOptions appreciates the opportunity to comment on the National Alzheimer's Plan.

Please see the attached comments.

Anne PosnerDirector of Program and Community SupportAgeOptionsOak Park, ILhttp://ageoptions.org

ATTACHMENT:   AgeOptions comments on National Alzheimer's Plan.doc

Available as separate links:
AgeOptions Comments on National Alzheimer's PlanAge Options

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Comments on Draft National Plan to Address Alzheimer's Disease

Below and attached are comments I am submitting on behalf of the Healthy Brain Workgroup of the Centers for Disease Control and Prevention-funded Healthy Aging Research Network (CDC-HAN).

Sincerely,

Daniela B. Friedman, MSc, PhDSouth Carolina HAN Co-Investigator and Co-Lead of the Healthy Brain WorkgroupAssistant Professor Department of Health Promotion, Education, and Behavior (HPEB)Arnold School of Public HealthUniversity of South CarolinaColumbia, SC

ATTACHMENT:   NAPA_Healthy Aging Research Network Response_30Mar2012_As Submitted.pdf

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Response to Draft National Plan to Address Alzheimer's Disease: Submitted on behalf of the Health Brain Workgroup of the Centers for Disease Control and Prevention-funded Healthy Aging Research Network (CDC-HAN)

The Healthy Brain Workgroup of the Centers for Disease Control and Prevention-funded Healthy Aging Research Network (CDC-HAN) strongly supports the vision statement of the National Alzheimer's Project Act (NAPA) presented by President Barack Obama, which aims to alleviate the suffering and burden associated with Alzheimer's disease (AD) and to "confront the challenge it poses to our public health."

The Healthy Aging Research Network (HAN) was formed in 2001 to help develop and implement a national research and dissemination agenda related to the public health aspects of healthy aging. The HAN consists of a coordinating center, seven member and affiliate universities, and representation from and participation by over 10 national agencies with interests in the well-being of older adults, including AARP, the Alzheimer's Association, the American Medical Association, the US Administration on Aging, the National Association of Chronic Disease Directors, the National Council on Aging, and the U.S. Environmental Protection Agency. This network has played a vital role in national initiatives to ensure the inclusion of AD, cognitive impairment, and cognitive health promotion in the Healthy People 2020 Older Adult objectives. The network has also worked successfully to inform the National Public Health Road Map to Maintaining Cognitive Health, released in June 2007 by the CDC and the Alzheimer's Association [1].

Between 2005 and 2009, the HAN conducted community-based research with over 600 diverse older adults, caregivers, and healthcare providers. Interviews and focus groups were conducted in English, Spanish, Mandarin, Cantonese, and Vietnamese, with representation from African American, American Indian, Asian American, Hispanic, and Non-Hispanic White communities, in urban and rural locations across nine states. [2-4]. Theseolder adults and those who care for older adults represent the stakeholders to whom NAPA is targeted. Findings from this large-scale, multi-site initiative (published in The Gerontologist, volume 49, supplement 1, June 2009) indicated that older adults, regardless of gender, race, ethnicity, language, or geographic region, agree that cognitive health is essential to healthy aging [5, 6]. Older adults also stated that existing media messages about cognitive health and its association with lifestyle factors can be conflicting and confusing [7]. It is imperative that researchers, educators, and policymakers continue to examine communication strategies to better inform the public about the evolving science of maintaining cognitive health and reducing the risk of cognitive impairment. Based on its strong track record, the HAN is well positioned to participate in such efforts.

As currently written, the NAPA does not explicitly state the impact of AD and other dementias on public health or the role that public health can play in this important area. We therefore strongly recommend the explicit inclusion of HAN expertise in public health research and practice in addressing each of the goals outlined in the NAPA. This document provides recommendations for roles that the HAN might fill in implementing the Plan.

  1. Prevent and Effectively Treat Alzheimer's Disease by 2025

    Public health has a long history of fielding prevention research and educational efforts in multiple chronic diseases such as heart disease, musculoskeletal disease, and cancer. HAN member centers have helped develop, evaluate, and implement successful health promotion programs in primary care, senior centers, and other community-based organizations. HAN researchers, in partnership with community collaborators, have developed and tested effective, evidence-based, and widely-used older adult exercise programs, including EnhanceFitness[8-9], Fit and Strong! [10, 11], and A Matter of Balance [12-14] and have demonstrated chronic illness risk reduction and improved health outcomes in these investigations. Although research is still needed about the impact of such lifestyle changes on AD [15], epidemiological and early randomized clinical trials (RCTs) show promise [16]. A cadre of experts within the HAN can help advance this work, both by conducting focused reviews of existing literature and large datasets, and by planning and implementing large scale lifestyle-enhancing initiatives. In addition, as noted above, the HAN has a proven track record in partnering with diverse groups who represent the growing numbers of racial and ethnic minorities in the US and recruiting them to participate in research and the implementation and dissemination of evidence-based findings.

  2. Optimize Care Quality and Efficiency

    Initiatives focused on expanding dementia-specific capabilities in primary care settings are already underway within the HAN. HAN centers have examined primary care providers' perceptions and practices regarding AD and cognitive impairment [17, 18]. A current CDC-funded Special Interest Project (SIP 10-37; PI: M. Snowden) is reviewing the scientific literature to determine the impact of cognitive impairment on co-occurring chronic illnesses, including morbidity, mortality, and how AD and dementias influence the medical care that an individual receives. The project will also identify and catalogue the elements of existing research databases for use in future studies to better understand the relationship between dementia and chronic conditions. The HAN member centers' established associations with racial and ethnic minority, low income, and rural populations provide resources and expertise for assessing and addressing the complications and obstacles faced by these groups who are at high risk for inadequate health care.

  3. Expand Supports for People with Alzheimer's Disease and Their Families

    There is a need for more broadly distributed evidence-based services through involvement of a variety of service providers, including State Health Departments, Area Agencies on Aging, non-profit organizations, faith-based organizations, and other facilities within local communities. Public health has a long history of working within these organizations, and can help mobilize communities to meet these challenges. HAN members and affiliates are actively engaged in working with the Administration on Aging (AoA) in this effort (e.g., University of Washington HAN investigators are currently working with the states of Washington, Oregon, and Ohio on translating evidence-based interventions for individuals with dementia and their family caregivers into existing community health systems [19]).

  4. Enhance Public Awareness and Engagement

    The Department of Health and Human Services should take advantage of the formative investigation already conducted by the HAN that was cited earlier [2-7]. This investigation found low health literacy and lack of access to culturally relevant information about cognitive health across all ethnic and language groups, and in both rural and urban environments. Older adults often reported that recommendations that they heard were ambiguous, contradictory, or impossible to comply with, and recommendations from health providers were often vague and lacked specific planning processes [7]. Thus, there is an urgent need for culturally and educationally appropriate materials and resources for individuals with cognitive impairment, individuals at risk for dementia, caregivers, and providers. The HAN comprehensive data set can provide guidance about messages and media that will be most effective in disseminating this information. The HAN has tremendous reach for public health and aging focused message testing and awareness campaign development, implementation, and evaluation.

    In addition, each HAN site has worked for over 10 years with community advisory groups to facilitate communication between and among state and local government agencies, nonprofit partners, racial and ethnic minority service providers, and academic public health researchers. These partnerships have actively developed and disseminated healthy aging programs, and can be leveraged to promote dementia-prevention education and intervention programs.

  5. Track Progress and Drive Improvement

    Public health researchers have long been instrumental in evaluating large-scale programs to promote health in older adults, including both lifestyle (e.g., exercise, nutrition) and primary prevention (e.g., immunization) interventions. Any effort to measure and evaluate the impact of NAPA on health outcomes for older adults and caregivers and on policy change must be informed by public health, taking advantage of existing expertise in population-level evaluation planning, data collection, analysis, interpretation, and dissemination. The HAN has been involved in developing aging-specific questions for a number of large surveys [18, 20], and has a long history of experience and expertise in this area. It should be noted that the CDC Healthy Aging Program (funder of the HAN) developed a 10-question Behavioral Risk Factor Surveillance System (BRFSS) module on Perceived Cognitive Impairment. Twenty-two states included the module on their state BRFSS in 2011; an additional 16 states are including the module in 2012 (total 38 states, including the District of Columbia). The CDC Healthy Aging Program is working with partners, including the states, to expand the module in 2013 to all 50 states.

In summary, to achieve the goals of NAPA, collaboration with and among public health researchers across the nation is needed. The HAN is an example of a successful and productive collaborative effort, and we look forward to helping move the science forward to address this important public health issue.

References:

  1. U.S. Centers for Disease Control and Prevention, Alzheimer's Association. The Healthy Brain Initiative: A National Public Health Road Map to Maintaining Cognitive Health. Chicago, IL: Alzheimer's Association, 2007.
  2. Laditka JN, Beard RL, Bryant LL, et al. Promoting cognitive health: A formative research collaboration of the Healthy Aging Research Network. Gerontologist. 2009;49(Suppl 1):S12-S17.
  3. Bryant LL, Laditka JN, Laditka SB, Mathews AE. Characteristics of the Healthy Brain sample: Representing diversity among older Americans. Gerontologist. 2009;49(Suppl 1):S23-S29.
  4. Laditka SB, Corwin SJ, Laditka JN, et al. Methods and management of the Healthy Brain study, a large multi-Site qualitative research project. Gerontologist. 2009;49(Suppl 1):S18-S22.
  5. Laditka SB, Corwin SJ, Laditka JN, et al. Attitudes about aging well among a diverse group of older Americans: implications for promoting cognitive health. Gerontologist. 2009;49(Suppl 1):S30-S39.
  6. Wilcox S, Sharkey JR, Mathews AE, et al. Perceptions and beliefs about the role of physical activity and nutrition on brain health in older adults. Gerontologist. 2009;49(Suppl 1):S61-S71.
  7. Friedman DB, Laditka JN, Hunter R, et al. Getting the message out about brain health: A cross cultural comparison of older adults' media awareness and communication needs on how to maintain a healthy brain. Gerontologist. 2009;49(Suppl 1):S50-S60.
  8. Belza B, Snyder S, Thompson M, LoGerfo J. From research to practice: EnhanceFitness ®, an innovative community-based senior exercise program. Top Geriatr Rehabil. 2010;26(4):299-309.
  9. Belza B, Shumway-Cook A, Phelan E, et al. The effects of a community-based exercise program on function and health in older adults: The EnhanceFitness Program. J Applied Gerontol. 2006; 25(4):291-306.
  10. Hughes SL, Seymour RB, Campbell RT, et al. Long term impact of Fit and Strong! on older adults with osteoarthritis. Gerontologist. 2006; 46(6):801-814.
  11. Hughes, S.L., Seymour RB, Campbell RT, et al. Fit and Strong!: Bolstering maintenance to physical activity among older adults with lower-extremity osteoarthritis. Am J Health Behav. 2010;34(6):750-763.
  12. Smith ML, Ory MG, Belza B, Altpeter M. Personal and delivery site characteristics associated with intervention dosage in and evidence-based fall risk reduction program for older adults. Translational Behavioral Medicine: Practice, Policy and Research, in press 2012.
  13. Smith ML, Jiang L, Ory M G. Falls efficacy among older adults enrolled in an evidence-based program to reduce fall-related risk: Sustainability of individual benefits over time. Family and Community Health, in press 2012;35(2).
  14. Smith ML, Ahn S, Sharkey JR, et al. Successful falls prevention programming for older adults in Texas: Rural-urban variations. J Applied Gerontol. 2011; DOI:10.1177/0733464810378407
  15. Hughes SL, Leith KH, Marquez DX, et al. Physical activity and older adults: expert consensus for a new research agenda. Gerontologist. 2011;51(6):822-832.
  16. Daviglus ML, Bell CC, Berrettini W, et al. National Institutes of Health State-of-the-Science conference statement on preventing Alzheimer's disease and cognitive decline. NIH Consensus Science Statements. April 26-28, 2010; 27(4):1-27.
  17. Hochhalter, AK, Bryant, LL, Hunter R, et al. Primary care providers' perceptions about cognitive health: A qualitative study. AcademyHealth Annual Research Meeting, Seattle, WA, June 12-14, 2011.
  18. Day KL, Friedman DB, Laditka JN, et al. Perceptions and practices on prevention of cognitive impairment: A survey of U.S. physicians. J Applied Gerontol. 2011; DOI: 10.1177/0733464811401354.
  19. Teri L, McKenzie G, Logsdon RG, et al. Translation of two evidence-based programs for training families to improve care of persons with dementia. Gerontologist. 2012 Jan 12. PMID: 22247431.
  20. Friedman DB, Hunter R, Bryant LL, et al. Beliefs and practices for reducing risk of cognitive impairment among physicians and other adults. Society for Public Health Education Midyear Scientific Conference, Nashville, TN, April 11-14, 2012.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  NAPA input

These are thoughts and quotes from people with early dementia that are actively involved as a Early Stage Advisory member at the Minnesota-North Dakota chapter. I feel it would be helpful and important to include the voice of someone with the disease.

Advocacy:

"Advocacy is important because you know that you are not alone in this disease." Bob PWED

"Early dementia is a total change in my life-loss of independence in the way I have lived my life. It is like standing on a high mountain and not knowing if I will be able to get down safely. Being an advocate for this disease gives me empowerment over this disease and hopefully others are empowered too." Julie PWED

"Alzheimer's is a quiet disease,people who have it often don't want to talk about it. Stating the disease can often take the shame out of the shadow and it can develop connections." Dick PWED

"It is important for us to be verbal about what we are experiencing. There are times of loneliness and sadness. We need the support of care partners and others. By support I mean a genuine concern and willingness to care. "Jim, PWED

Education:

"Education helps me know what is happening to me, helps me navigate and understand this disease." Bob PWED

"This diagnosis hits you in the gut. Life stops for a time until someone comes my way, to help me learn a whole new life." Julie PWED

"More people understand the disease more clearly when it is spoken openly" Dick PWED

Support Groups:

"Support groups are helpful in learning and supporting one another." Bob PWED

"We need a time and place to learn from each other, to support each other, to learn to live again knowing that we will each hold the other up." Julie PWED

"Getting together with others and speaking openly about the disease opens up discussion that can be very helpful and connects us with others." Dick PWED

Early Stage Advisory Quotes

"It's bad enough being diagnosed," Julie said, "it feels like no one wants you anymore. I chose to get involved because I want a purpose; I want to be engaged and for my life to have meaning. I want to help others who are just like me and use the brain power I do have, for something that is good." Julie PWED

"You have to understand, life doesn't stop with diagnosis," Jim said. "This group is a testament to what it's like to live with this disease." He smiled. "And right now, this is the best period of my life. I'm going to enjoy it." Jim, PWED

"We can change the world." Mike said. "My goal is to eradicate this disease so my children never have to deal with it again." Jim, Dick and Julie all nod in agreement. Mike, PWED

"We're the new faces of Alzheimer's," Dick said. "And we're choosing to make a difference." Dick, PWED

"We don't just have a disease," Dick said, the newest member of the Minnesota-North Dakota Early Stage Advisory Group. "We live the disease. And while I've accepted that this is a part of me, I'm not going to let it define who I am."

"We're the same people we were yesterday," Julie said. "We haven't changed and it's important others know."

Thank you,

Sara Tucker

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Draft HHS National Plan to Address Alzheimer's Disease

Attached please find a letter from the National Academy of Neuropsychology (NAN) regarding the Draft HHS National Plan to Address Alzheimer's Disease. Please let me know if you have any questions.

Thank you,

Allison Mendrys, CMPMeetings & Events ManagerNational Academy of NeuropsychologyDenver, COhttp://www.nanonline.org

ATTACHMENT:   Draft HHS National Plan to Address AD.pdf

Available as separate links:
Draft HHS National Plan to Address Alzheimer's Disease: Comments from the Professional Affairs & Information Committee, National Academy of NeuropsychologyNational Academy of Neuropsychology

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Comments on Draft National Plan to Address Alzheimer's Disease

Attached are my comments. By way of background I am a caregiver for my wife who has dementia. I am also a volunteer Ambassador for the Northern AZ Region of the Desert SW Chapter of the Alzheimer's Association.

Robert Ellis

ATTACHMENT:   Comments on the Draft National Plan to Address Alzheimer's Disease - Mar2012.doc

Available as separate links:
Comments on the Draft National Plan to Address Alzheimer's DiseaseComments on the Draft National Plan to Address Alzheimer's Disease Robert Ellis

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Alliance for Aging Research comments on draft National Plan to Address Alzheimer's Disease

Attached are the Alliance for Aging Research's comments on the draft National Plan to Address Alzheimer's Disease.

Thank you for the opportunity to comment.

Best,

Susan Peschin, MHSChief Operating OfficerAlliance for Aging ResearchWashington, DC

ATTACHMENT:   Alliance for Aging Research Alz National Plan comments 03-30-12.pdf

Available as separate links:
Comments on the Draft National Plan to Address Alzheimer's DiseaseComment on the Draft National Plan to Address Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  GE Healthcare input to the draft National Plan to Address Alzheimers

In accordance with the solicitation in the Federal Register on 2/24/2012, please find embedded a letter of input from GE Healthcare regarding the National Plan to Address AlzheimersDisease.

A hardcopy has been sent also by courier to your attention for receipt by the deadline of March 30. Thank you for this opportunity to contribute.

Respectfully,

Richard Frank, MD, PhDVP, Global Clinical Strategy and PolicyGE HealthcarePrinceton, NJ

ATTACHMENT:   GEHC Comments To HHS 3 30 2012.pdf

Available as separate links:
Public Input on the Draft National Plan to Address Alzheimer's DiseaseGE Healthcare - Re: Public Input on the Draft National Plan to Address Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Draft Alz Plan Comment

The University of Virginia's Office of Continuing Medical Education (CME) is working in collaboration with the Institute on Aging at the University of Virginia and the Alzheimer's Association, Central and Western Virginia Chapter and other partners to advance Goal 1, Strategy 1.E, to facilitate translation of research findings into medical practice, and Goal 2, Strategy 2.A and 2B, to build a workforce with the skills to provide high-quality care. We have developed an authoritative website for Alzheimer's education for physicians, nurses, and other healthcare professionals, to facilitate dissemination, translation, and implementation of the latest research findings and treatments. Called MemoryCommons:

http://www.memorycommons.org/

this web-based portal serves as a single point of access for on-line CME and training programming related to prevention, diagnosis, treatment, and public health challenges of Alzheimer's disease and related conditions, including the cognitive changes in aging and clinical differentiation of illnesses causing memory loss and dementia. Overall, MemoryCommonsserves as a national resource where physicians, physicians in training, and other healthcare professionals can easily participate in educational activities and self-assessment; find tools that can support their clinical care of the aging patient; and apply the latest medical advances to their practices. We would be pleased to continue development of this tool as an existing resource upon which additional efforts can be built.

Donna L. HearnExecutive Director, Institute on Aging Assistant ChairDept of PsychologyUniversity of Virginia Charlottesville, VA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  We need a bold plan to stop Alzheimer's!

Although the official comment period has closed for the NAPA draft plan, I'm writing today to urge you to go bolder with the final plan to be released by HHS later this month.

Alzheimer's is a cruel disease. It slowly steals one's intellect, ability to communicate, independence, and dignity, even control over basic bodily functions like eating and caring for personal hygiene. It also places an overwhelming burden on caregivers -- emotionally, physically, and financially.

The commitment to a 2025 deadline in the draft NAPA plan represents a major step forward in the fight against Alzheimer's. I am pleased that the plan recognizes the need for increasing enrollment in clinical trials, compressing the drug development process, accelerating targeted research, and better coordinating activities with other countries.

However, I am one of many concerned Alzheimer's advocates who believe that this first draft fails to present a strategy aggressive enough to achieve the goal of preventing and treating Alzheimer's within 13 years. It lacks specificity in terms of timelines and deadlines, provides no path to providing significantly greater resources, and does not hold a single high-level office or individual accountable for the overall plan.

I hope that HHS will address these issues so that the next version of the plan will be bolder.

With the number of Alzheimer's patients expected to triple in the coming decades, we must embrace a plan that eschews a "business-as-usual" approach and tackles Alzheimer's with the urgency and aggressiveness it requires. If not, we stand to lose millions more lives -- and trillions of dollars -- to this disease.

Thank you.

Available as separate links:
List of the 3,488 People Who Sent this Form Letter in March 2012We need a bold plan to stop Alzheimer's!

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Comments Draft National Plan to Address Alzheimer's Disease

Attached please find Merck's comments regarding the Draft National Plan to Address Alzheimer's Disease.

If you have any questions, please let us know.

Thank you,

Angela M. StewartDirector & Counsel, Public Policy and Government RelationsMerckWashington DC

ATTACHMENT:   MERCK Comments Draft NAPA Plan.pdf

Available as separate links:
Comments on Draft National Plan to Address Alzheimer's DiseaseMERCK - Re: Comments on Draft National Plan to Address Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Oklahoma's written comments for draft national Alzheimer's plan

Thank you for the opportunity to submit written comments for the draft National Plan to Address Alzheimer's Disease as part of the National Alzheimer's Project Act.

In Oklahoma, our aging network formed an interagency workgroup to discuss the draft and make recommendations. The following agencies and their representatives were asked for their input:

Aging Services Division (ASD) Division DirectorASD Aging and Disability Resource Center (ADRC) Project DirectorASD Policy and Strategic Planning SupervisorOklahoma Health Care Authority representative (the state Medicaid agency)ASD Home and Community-Based Services Program AdministratorAdult Protective Services Program AdministratorOKDHS Developmental Disabilities Division DirectorASD Older Americans Act Program AdministratorOklahoma Mental Health Advocacy Coalition Director ASD Legal Services DeveloperASD State Long Term Care Ombudsman

Many of these individuals also served on Oklahoma's task force to study and make recommendations regarding the effect of Alzheimer's Disease in our state. This task force, co-chaired by Senator Tom Ivester and Representative David Dank, met over a year and filed a final report which can be found here: http://www.oksenate.gov/publications/issue_papers/health_social_services/effect_of_alzheimers_task_force_final_report.pdf

Our group focused on Goals 2, 3, and 4 of the national draft plan.

General Thoughts:

Our group felt inclusion of the existing aging network is necessary for the success of the national plan. The aging network, through the above listed agencies and programs, already works with family caregivers, documents existing service gaps, and disseminates information statewide. Our statewide ADRC program already works to help families and caregivers to meet current needs and plan for future ones. Our Older Americans Act services specially target those individuals and their families who are facing an Alzheimer's diagnosis through the National Family Caregiver Support Program. Including the aging network would help to optimize existing resources and coordinate implementation of the plan's objectives. Our overarching concern is the aging network and its involvement in the rollout of this plan.

Specific Comments:

  1. The draft plan references a Research Summit in May 2012 (pg. 7). We were curious if that has been scheduled, who will be participating, what will come out of that summit that could be used and in what way, etc. Likewise, the Federal Interagency Working Group referenced in the plan could be heavily leveraged to support change needed at the state level. Have the members of that group been chosen? What are differences between that group and the to-be-assembled leadership team referenced on pg. 29?

  2. We really liked the references in both plans for 1) veterans 2) private sector. The private sector piece has limitless opportunity. Finally, we think for anything meaningful to happen -- either at the national or state level -- you must see legislative involvement and support.

  3. In Oklahoma we have recognized the importance of providing case management to inform and coordinate services available to caregivers and their families and would like to see it as a cornerstone of services under this plan.

  4. Oklahoma's Aging Services Division works with the Oklahoma Department of Corrections and would like to see the unique needs of older prisoners addressed: (1) For those who are incarcerated, we would like to see specialized training in dementia information for prison personnel and comparative treatment options and (2) For those who have been released, more "safety net" provisions since these individuals are less likely to have a family/friend support network.

  5. We would like the plan to include the following action items under a new Strategy 3.F:

    Strategy 3.F. Provide leadership in understanding legal issues, including legal opportunities and obstacles faced by persons with Alzheimer's Disease, their family members and caregivers. Legal issues of persons with Alzheimer's Disease emerge as the progression of the disease continues. Prompt and early legal intervention, prior to the onset of incapacity, can relieve stress on family members and caregivers who must deal with the consequences of lack of legal planning as capacity continues to diminish. AOA's Legal Services Developers in each state address the development of local legal services and ensure that education is available to inform persons with Alzheimer's Disease, their family members and caregivers about legal options.

    Action 3F.1. Provide information to caregivers and family members regarding legal issues during life of the person with Alzheimer's Disease as capacity diminishes. HHS will prioritize the dissemination of legal information to caregivers and family members regarding legal issues during life of the person with Alzheimer's Disease. HHS will encourage state and local entities to work with local attorneys and legal providers to offer information related to the issues of capacity for decision making along the continuum of the progression of the disease; the uses and abuses of powers of attorney for finances and health care; the execution of advance directives, including living wills, do not resuscitate consent forms and the appointment of health care proxies; the process of legal guardianship that enables caregivers or family members to make decisions regarding the care of the person and/or the finances of the person Alzheimer's disease, and the appropriate use of "least restrictive" means to preserve the dignity of the person with Alzheimer's Disease.

    Action 3.F.2. Provide information to caregivers and family members regarding legal issues upon the death of the person with Alzheimer's Disease. HHS also recognizes that the need for quality information regarding legal issues upon the death of the person with Alzheimer's Disease is paramount. HHS will work with states to engage local attorneys and legal providers in providing information related to estate planning documents and techniques including the execution of a will and the process of probate that addresses the need to name an executor and beneficiaries; estate planning techniques that may be available in states to avoid probate including living trusts; transfer on death and payable on death documents and deeds; and the use and abuse of joint tenancy as an estate planning tool with finances and real property.

Jennifer K. CasePrograms SupervisorOklahoma City, OK

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Comments on Draft National Plan to Address Alzheimer's Disease; Down syndrome

I am uncertain whether my comments on the Draft National Plan to Address Alzheimer's Disease (see attached) are most appropriate to be sent to you, as liaison with the Advisory Council, and/or napa@hhs.gov (representing address for public comments), as I am unclear whether there is a distinction. I believe my comments may be most appropriate and relevant for the Advisory Council and their considerations, and therefore sending to you. Please let me know if I should also send directly to napa@hhs.gov.

I appreciate the opportunity to participate in the March 14 Advisory Council teleconference as well as the opportunity to submit my comments on the Draft National Plan to Address Alzheimer's Disease and its importance for the more than 400,000 individuals with Down syndrome in the US and their families and caregivers as well as associated stakeholders. More explicit inclusion of Down syndrome as integral to the Plan, particular concerning fundamental, translational and clinical research, will be important for accelerating progress and success not only for individuals with Down syndrome, and associated very high Alzheimer's disease neuropathology and dementia, but also for the entire population that will develop or currently have Alzheimer's disease.

Should you have any additional questions etc., please do not hesitate to contact me.

Thank you,

Michael M. Harpold, Ph.D.Chief Scientific OfficerChair, Scientific Advisory BoardDownSyndrome Research and Treatment Foundation

ATTACHMENT:   Harpold_DSRTF_Commentson NAPA Darft Natl Alzheimers Plan 03.12.pdf

Available as separate links:
Comments Regarding Draft National Plan To Address Alzheimer's Disease Harpold/DSRTF - Comments Regarding Draft National Plan To Address Alzheimer’s Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Comments re: the draft National Plan to Address Alzheimer's Disease

Thanks for writing earlier this week to clarify your group's upcoming deadlines regarding the draft National Plan to Address Alzheimer's Disease. I'm attaching written comments from my organization, Healthcentric Advisors, and the leadership team on our Medicare-funded Safe Transitions Project. After our project's Advisory Board meets next week, we'll also share a summary of the group's discussion about the draft plan.

We appreciate the opportunity to review and comment on this document--and wish you the best of luck as you finalize it!

Thanks,

Rosa Baier, MPHSenior ScientistHealthcentric Advisors Teaching AssociateWarren Alpert Medical School of Brown University Providence, RI

ATTACHMENT:   HCA_Draft National Plan to Address Alzheimer's Disease_032912.pdf

Available as separate links:
Healthcentric Advisors Comments on Draft National PlanComments from Healthcentric Advisors

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  IDoA written comments National Alzheimer's Plan

Attached please find written comments from Dr. John K. Holton, Director of the Illinois Department on Aging, supporting the role of the Aging Network in the National Alzheimer's Plan and the importance of addressing the needs of caregivers of persons with dementia.

Please contact me should you have any questions.

Sincerely,

Barbara SchwartzRelatives Raising Children ProgramCaregiver ProgramLifespan RespiteIllinois Department on AgingSpringfield, IL

ATTACHMENT:   Director's letter to HHS National Alz Plan.pdf

Available as separate links:
Illinois Department on Aging Comments on National PlanNational Alzheimer's Plan

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  AFA's Comments to Draft National Plan

Attached please find the Alzheimer's Foundation of America's (AFA's) report, "The Time Is Now," which serves as AFA's comments to the draft national plan to address Alzheimer's disease which was released February, 2012.

As always, please let me know if you have any questions or require further information.

Best,

Eric SokolVP,PublicPolicyAlzheimer's Foundation of America

ATTACHMENT:   TheTimeToActIsNow(3).pdf

Available as separate links:
The Time to Act Is Now: Action Steps and Recommendations to the Draft National Plan to Address Alzheimer's DiseaseThe Time to Act is Now

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Comments on National Plan to Address Alzheimer's Disease

I was quite pleased to read about the National Plan to Address Alzheimer's Disease. As a geriatrician and wound care physician, the majority of my patients are in some form of this devastating illness.

I was dismayed, however, to see absolutely no mention of the fact that currently Alzheimer's Disease is a terminal disease. In reviewing the following statement, one must get to the root cause as to how more healthcare resources are spent on these individuals:

"Caring for people with Alzheimer's disease also strains the health and long-term care systems. Individuals with Alzheimer's disease use a disproportionate amount of healthcare resources; for instance, they are hospitalized 2-3 times as often as people the same age who do not have the disease.9"

Many family members and caregivers do not understand that the natural progression of Alzheimer's Disease results in total dependency, resulting in aspiration pneumonias because of swallowing dysfunction, urosepsis and failing to thrive - despite 1:1 care by family members or caregivers.

The Institute for Aging Research at Hebrew SeniorLife has recently published "Advanced Dementia: A Guide for Families". This guide informs family members that Alzheimer's, and other forms of dementia, are terminal and that decisions can be made to enhance the quality of life rather than the quantity.

Until we find a cure for Alzheimer's, it will continue to be a terminal illness. Efforts must be made to educate the masses on the progression of this disease so that appropriate choices are made in the best interest of these patients and their families.

Sincerely,

E. Foy White-Chu, MDInstructor in Medicine, HarvardDirector of Wound Healing CenterHebrew Senior LifeRoslindale, MA

Primary Care GeriatricianNew Bridge on the Charles - Wellness CenterDedham, MA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  NAPA comment submission

Attached please find New York Memory Centers NAPA comments for the record. Please confirm receipt of this e-mail. Thank you.

Christopher Nadeau

ATTACHMENT:   NAPA Plan rec letr 03.29.12 epfnl.doc

Available as separate links:
New York Memory Center Comments on the Draft Framework for the National Plan to Address Alzheimer's DiseaseNew York Memory Center - RE: New York Memory Center comments on the Draft Framework for the National Plan to Address Alzheimer’s Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 29, 2012

SUBJECT:  Alzheimers plan

Caregiver support: comment/recommendations for a caregiver "proxy" for specific recurring elements/items to obtain AZ care and/or documentation of services. For example, there is a service here in Maryland (maybe all states - but I never utilized it until I moved here). For a fee (that is well worth it) the service is automobile title/tax documentation and filing. This title service obtains the necessary information from the owner of the vehicle and then completes the necessary processes at the title/courthouse to research title, complete documents and file the title.

Something similar could/should be offered to caregivers. They lose many hours from their own work/family/life spending hours dealing with the mandatory documentation/filing/provider visits - Insurance, Medicare, SSI, finances.

Improvements could be gained through informatics and digitalization of records and bioscreen/markers. Obtain information from AZ healthcare proxy/financial proxy caregivers to write a book on a step wise process of what is required by caregivers to file Medicare, SSI, etc. and suggestions on how a business "proxy" service could do this work. And/or how to automate the procedures through functionalities through a software application and with secure/encryption.

Home/housing models: I hear repeatedly that it is cheaper for an AZ patient to live at home (if home is available) than in an institutional setting. That is not true in the current environment. The cost of maintaining 24h/7d care in an AZ patient home is more expensive that placing the AZ patient in an institution. For example, the cost of care in Alabama, is primarily due to in-house sitter/aide - minimum $12-15/hour, is the equivalent of $264-$360/day, equivalent to up to $10,000/month. This does not include cost of housing overhead, food, medications, transportation, clothing, toiletries, taxes. The cost of AZ/dementia care in an assisted living facility is about 50% of that cost (includes housing, utilities, and food). Either cost is excessive and any personal savings are rapidly consumed and then insurance (if coverage purchased), then Medicaid pays.

The only way to reduce or minimize in home care is for volunteer services and/or family live in care. Churches may be a "mission" service and should consider the care/education/services for elderly adultsequivalent to the resources they invest in children services. With improvement of technology, monitoring/tracking devices, virtual monitoring, the care in house may be drastically reduced until the AZ patient is incapable of or has severe reductions in ADLs.

J. Thomas

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 28, 2012

SUBJECT:  comment on National Alzheimer's Plan draft

I hope the attached serves as a useful mechanism for bringing nonpharmacological issues to the fore in the final draft of the National Alzheimer's Plan.

John Zeisel

ATTACHMENT:   Letter based on Zeisel Petition.pdf

Available as separate links:
Draft National Alzheimer's PlanDraft National Alzheimer's Plan

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 28, 2012

SUBJECT:  NAPA Plan comments

Hello! My name is Julie Levis. I am the Early Stage Clinical Manager for the Alzheimer's Association Greater San Fernando Valley Service Center.

We offer care consultation and early stage support groups for both the person with the memory problems and their care partners. I asked my early stage support group participants to provide suggestions for the NAPA Plan and here they are for your consideration:

  • Education:
    • More emphasis on community education for people recently diagnosed
    • Opportunity to remain educationally integrated in society (taking classes to build cognitive reserve, educational institutions for cognitive impaired, etc.)
  • Peer support
    • Develop support networks for early stage individuals (support groups, social clubs, etc.)
  • Research
    • Greater emphasis on ES intervention- preventative treatment (what to do to avoid disease progression)
  • Media
    • More AD exposure in the media to assist people in recognizing the early signs

Thank you!

Julie LevisAlzheimer's Association

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 28, 2012

SUBJECT:  American Psychological Association Comments on Draft National Plan to Address AD

Attached please find the American Psychological Association's comments on the Draft National Plan to Address Alzheimer's Disease.

As noted in the attached, APA is eager to collaborate with the Advisory Council on Alzheimer's Research, Care, and Services, federal agencies, and other organizations in the continued planning and implementation of the National Plan.

Thank you for the opportunity to provide these comments.

Deborah DiGilioDirector, Office on AgingPublic Interest DirectorateAmerican Psychological AssociationWashington, DChttp://www.apa.org/pi/aging

ATTACHMENT:   APA Comments on Draft National Plan March 28.pdf

Available as separate links:
American Psychological Association Comments on Draft National PlanAmerican Psychological Association Comments on Draft National Plan

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 28, 2012

SUBJECT:  NAPA Comment

Please accept my letter regarding the National Plan to Address Alzheimer's Disease.

Dr. Linda Levine Madori, ATR-BC, CTRS, LCATProfessor, Clinical Internship SupervisorFulbright Scholar and LiaisonSt. Thomas Aquinas CollegeSparkill, NYhttp://www.levinemadoriphd.com

ATTACHMENT:   Linda Levine Madori, PhD,LCAT, ATR-BC,CTRS.docx

Available as separate links:
Professor, Researcher and Author Comments on the Draft Framework for the National Plan to Address Alzheimer's DiseaseSt. Thomas Aquinas College - Re: Professor, Researcher and Author comments on the Draft Framework for the National Plan to Address Alzheimer’s Disease

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DATE:  March 28, 2012

SUBJECT:  Comments - Draft National Plan to Address Alzheimer's Disease

See attached for the comments submitted by AHCA.

Sandra FitzlerAmerican Health Care AssociationWashington, DC

ATTACHMENT:   National Alzheimer's Plan Comments 032812.docx

Available as separate links:
Comments on Draft Plan to Address Alzheimer's DiseaseComments from the American Health Care Association

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DATE:  March 27, 2012

SUBJECT:  Draft National Plan to Address Alzheimer's Disease

The Down Syndrome Guild of Greater Kansas City represents 1200 families in 37 counties in Kansas and Missouri who are all caring for a loved one with Down syndrome. Many of our parents are gravely concerned about their child, teen or adult's future and the strong likelihood that they will develop dementia and Alzheimer's Disease.

I am writing to urge the Advisory Council to ensure that the population of people with Down syndrome (Ds) is specifically identified in the Draft National Plan to Address Alzheimer's Disease. Currently, this group of individuals, known to be at high risk of developing Alzheimer's and dementia, is given a fleeting reference in the Draft Plan. This omission must be rectified. We are aware that there is a lot of corollary research going on between Alzheimer's and Down syndrome and feel that more attention should be paid to this to ensure a bright future for both populations of people.

In order to better understand the Alzheimer disease process and develop early identification and other practices to treat this devastating disease which often affects individuals with DS early, research is urgently needed. Research of this type will benefit the general population as well as individuals with Down syndrome and those thousands with DS at risk for developing dementia. In addition, as a parent or family member, I am aware of the need to provide special supports for caregivers, often siblings or aging parents, who assume responsibilities for the care needs for individuals with intellectual disabilities and dementia.

It is also case that these individuals have special needs that may differ and require different supports than those provided to individuals in the general population. These needs have been identified by the National Task Group and Intellectual Disabilities and Dementia Practices in an action plan it issued as part of its report: My Thinker's Not Working: A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports",which has been submitted to the Council.

Individuals with Down syndrome and their families deserve to have research and population specific clinical trials identified clearly as necessary actions in the final National Plan to Address Alzheimer's Disease. They face many challenges that require increased awareness, early recognition and supports. The National Plan to Address Alzheimer's Disease is not complete unless it fully addresses the Down syndrome population as well.

Thank you for your consideration of this request!

Sincerely,

Amy AllisonExecutive DirectorDown Syndrome Guild of Greater Kansas CityShawnee Mission, KShttp://www.kcdsg.org

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 27, 2012

SUBJECT:  Comments concerning National Alzheimer's Plan

Attached are comments submitted by The Arc concerning the Draft National Alzheimer's Plan.

Maureen FitzgeraldThe ArcWashington, DChttp://www.thearc.org

ATTACHMENT:   The Arc comments Draft Nat'l Alzheimer's Plan.pdf

Available as separate links:
Comments from The ArcComments from The Arc

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DATE:  March 27, 2012

SUBJECT:  Comments on the National Alzheimer's Project Act Plan

Please find attached comments from the National Association of State Directors of Developmental Disabilities Services to the Advisory Council on Alzheimer's Research, Care, and Services regarding the Draft National Plan To Address Alzheimer's Disease.

Charles R. Moseley, Ed.D.Associate Executive DirectorNASDDDSAlexandria, VAhttp://www.nasddds.org

ATTACHMENT:   NASDDDS Comments on Draft Plan 3-27-12.pdf

Available as separate links:
Comments from the National Association of State Directors of Developmental Disabilities ServicesComments from the National Association of State Directors of Developmental Disabilities Services

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DATE:  March 27, 2012

SUBJECT:  Down syndrome

Please include individuals with Down syndrome in the National Plan for Alzheimer's disease and related dementias. This group if individuals is underrepresented and under funded.

Your attention is appreciated.

Christine LingoChicago Heights, IL

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DATE:  March 26, 2012

SUBJECT:  Alzheimer Center at Parker Jewish Institute for Health Care and Rehabilitation comments on the draft National Plan to Address Alzheimer's disease

The Alzheimer Center at the Parker Jewish Institute for Health Care and Rehabilitation, located in New Hyde Park, New York, vigorously supports the draft National Plan to Address Alzheimer's disease. We are particularly supportive of the Plan's objectives to increase funding for Alzheimer's disease research and training initiatives, as well as development of state plans.

Parker is a highly acclaimed non-profit that offers inpatient short term rehabilitation, sub-acute care and nursing home care, as well as a comprehensive network of community health care services, inclusive of adult day health care, home health care, hospice care, on-site dialysis, medical transportation -and a unique Alzheimer Center that accepts participants at all stages of dementia. In 2011 alone, the Alzheimer Center at Parker served 1,085 participants. The Institute is also among the leaders in teaching and research.

Should you need additional testimony with regard to the plan, or are considering sites for pilot programs, please feel free to call upon us.

Sincerely yours,

Michael N. RosenblutPresident and CEOParker Jewish Institute for Health Care and RehabilitationNew Hyde Park, NYhttp://www.parkerinstitute.org

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 26, 2012

SUBJECT:  National Alzheimer's Plan

The Iowa Department on Aging is encouraged by the initiation of a national plan to address Alzheimer's disease and related disorders. A diagnosis of, or in many cases just a discussion about Alzheimer's disease or related dementia can trigger a sense of fear, foreboding and uncertainty.

The National Alzheimer's plan has the potential to greatly improve and enhance the current system and help improve the quality of life and quality of care for both people diagnosed and their caregivers. But without adequate funding attached to the proposed goals, we are concerned that systems change is not possible.

  1. To effectively create a system to enhance quality care and efficiency we believe the Plan should dictate minimum standards including, but not limited to the following:
    • An increased number of hours of education and training required for health care professionals and other disciplines who come in contact with people diagnosed with dementia.
    • Physician training programs that stress the importance of early detection and diagnosis.
    • Create and implement dementia unit requirements that include specially trained activity personnel, increased daily programming and adequate social work staff to meet the needs of people living in long-term care facilities.
    • Dementia care offered in hospitals must include staff with dementia training and enough staff to properly care for patients with a dementia diagnosis.
  2. Expand patient and family support by enhancing existing systems.
    • Strengthen the National Family Caregiver Program to ensure that specialists are dementia capable and can provide education, referral and resource information and support to family caregivers who are caring for a person with dementia.
    • Strengthen the Lifespan Respite Program by providing adequate funds for respite care for people with dementia. Statistics show that access to respite care has a definite impact on the length of time a person can be cared for at home.
    • Provide access to evidence based programs that demonstrate effective support to all caregivers of people experiencing dementia
    • Increase psychosocial interventions for the caregiver and care receiver that offer support and assistance for people in home and community based programs.
  3. Enhance public awareness and engagement through an organized, funded campaign to assist the general public in:
    • Understanding the importance of early detection, diagnosis and treatment.
    • Understanding the importance of future planning
    • Becoming knowledgeable about long term living and community support services that are available in local communities

The Iowa Department on Aging believes that a nationally funded and coordinated effort is needed to enhance care, expand caregiver support and increase awareness and we support the National Alzheimer's Plan.

Sincerely,

Donna K. HarveyDirectorIowa Department on AgingDes Moines, IAhttp://www.aging.iowa.gov

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 26, 2012

SUBJECT:  Address the Mental Health Needs of People with Dementia

The U.S. Department of Health and Human Services (HHS) should have Address the Mental Health Needs of People with Dementia and their caregivers in its ambitious plan to address Alzheimer's disease.

Unfortunately, the draft plan does not provide adequate attention to mental disorders commonly experienced by people with dementia and their caregivers.

Dementia frequently co-occurs with mental health conditions such as depression and anxiety disorders. In addition, family caregivers are at high risk for mental and physical health problems. Recognizing and treating these conditions plays a vital role in improving patients' cognitive functioning as well as the quality of life of people with dementia and their caregivers.

W. Marc Ducker, Esq. CPRPCommunity Information and Benefits SpecialistConsumer LinkMHA of Nassau CountyHempstead, NYhttp://www.mhanc.org

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 26, 2012

SUBJECT:  Respite, Education & Training

As younger populations become increasingly urban and concentrated, persons more likely to have Alzheimer's or related dementia, become stranded in rural communities without adequate resources or family to assist them as the disease progresses. As jobs become scarce in rural communities, children of the baby boomers have moved where there are better job prospects leaving their parents alone. The community supports simply are not adequate in rural communities to address the specific needs of persons with dementia who have no informal primary caregiver's. Many of these people will end up in nursing facilities, that are ill-equipped to handle the specific care needs of an Alzheimer's patient. Nursing homes are for skilled care; however, Alzheimer's patients frequently do not need skilled care (for much of the disease progression), they simply need supervision, social stimulation, and help with minimal ADL's and IADL's. Nursing facilities have problems handling the behavior of Alzheimer's patients, because they are frequently mobile and cause disturbances with other patients. As a result nursing facilities are reluctant to accept patients with Alzheimer's disease early in disease progression. The addition of Alzheimer's dementia specific units to nursing facilities, especially in rural communities, would alleviate some of this problem. The staffing would be smaller, and the cost per day to medicare/Medicaid could be reduced as a result.

Additionally, for informal caregivers that do live in rural communities, support groups, educational opportunities, and training are absent. In addition, broadband internet is also difficult to obtain do inadequate infrastructure, leaving the caregiver unable to obtain information. The stress of caregiving combined with isolation shortens the amount of time an informal caregiver can increase the chance the persons are placed in nursing facilities for lack of another option. Providing community training through religious institutions, civic organizations, and other groups would allow for wide dispersal of accurate information, as well as the infrastructure in rural communities, improving early diagnosis and extending the amount of time a person can stay at home with a caregiver by reducing their stress through knowledge and resources. One way of accomplishing this is to certify persons at the AAAs or County Health Departments to recruit and train volunteers to provide outreach and educational events in their communities.

Another component of stress reduction is respite support. Caregiver's of persons with Alzheimer's or related diseases care for their loved ones for long periods of time. The time spent away from work, church, and family can become taxing and frequent breaks are needed. As there is increased demand for respite, and in the absence of increased funding for flexible respite support one of two options is available: 1) reduce the amount of respite per caregiver or 2) maintain lengthy waiting lists. Both options fail. At some point, respite is ineffective if it is infrequent and for very brief periods of time. If the caregiver waits too long without a break on a waiting list for respite, the caregiver will give up before the programs can provide assistance. The solution is to increase funding for respite supports through the AAAs, V.A., as well as introduce a income needs based component to respite support programs eligibility requirements. People that are wealthy ought to pay for their respite, or prove they have paid x amount before they can gain access to subsidized respite support each year. The reach of the programs would extend to those least likely to take a break, because they are unable to afford it.

James Patterson

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DATE:  March 26, 2012

SUBJECT:  Submitting my COMMENT based on my telephonic statement of March 14, 2012 to the Advisory Council

This letter is very similar to my oral testimony (a few corrected typos and better words)--except for my adding a new paragraph at the beginning--to respond more fully to a public comment that preceded mine:

A person (Michael Ellenbogen?) who currently suffers from mild Alzheimer's dementia concluded his comments by recommending the Advisory Council on Alzheimer's Research, Care, and Services consider the "right-to-die" option. He thus implied that Physician-Assisted Dying could be an option for patients who suffer from dementia. Because of time limitations, I could only disagree briefly by saying that Physician-Assisted Dying will neither help nor is needed. I now explain more: (1) Why would Physician-Assisted Dying NOT help? Where Physician-Assisted Dying is legal, the law requires patients be of "sound mind" when they ask their physician to write a prescription for a lethal dose of medication. Yet dementia patients lose the mental capacity to make medical decisions early in the course of this progressive disease. Thus for dementia patients, Physician-Assisted Dying would compound their tragedy with premature dying. This is because dementia patients can have much good life after they lose capacity--and they can expect more, with further research--so I and many others consider premature dying an act that violates the principle that life is precious. (2) Why is Physician-Assisted Dying NOT needed? Because Living Will forms and the discussions they provoke can be both moral and effective. Combined with other clinical and strategic forms, diligent Advance Care Planning can give people peace of mind, whether they are still well or in the early stage of dementia. They need not worry about being forced to linger for months to years by enduring the huge burdens and suffering that characterize Advanced Dementia. Instead, they can feel confident that others will honor their Known Wishes after they lose the ability to speak for themselves.

Here is my original comment:

For patients who will someday suffer from Alzheimer's and related dementias, Advance Care Planning is most urgent, most important, and most challenging. The process of expressing one's end-of-life wishes in advance warrants both 1) the development of innovative planning tools that are easy, effective, and acceptable to both patients and physicians, and 2) sufficient effort to train professionals to honor Advance Directives and to recommend that their patients/clients complete them.

Why is Advance Care Planning most urgent? Unlike most diseases, patients who have dementia typically lose mental capacity to make end-of-life medical decisions early in the course of the disease. Once their window of opportunity to make decisions closes, they will not be able to participate in their own end-of-life planning. The reality of the huge, increasing epidemic of patients whose lives will end as they suffer from Alzheimer's disease makes Advance Care Planning even more urgent on a societal level.

Why is Advance Care Planning most important? Because patients can linger in the terminal stage of Alzheimer's Dementia for several years. The relentless course of their disease may frustrate the best efforts of their clinicians, their caregivers and their loved ones. The multiple burdens on others are well known. For example, more than one-third of Alzheimer's caregivers are depressed. Yet the suffering patients themselves experience is under-appreciated. For too many who have lost the ability to complain and whose behavior may be atypical, pain and suffering may go unrecognized and therefore under-treated for months, or even years

Why is Advance Care Planning most challenging? Unlike other terminal illnesses, often there are no life-sustaining treatments that physicians can withhold or withdraw. Typically, a strong body houses a feeble brain. Many who feel the pang of the "Dementia Fear" consider "premature dying." They may believe: "If I don't kill myself now, I won't be able to kill myself later. Then, I'll be trapped in a condition I loathe so much that I'd rather be dead." Those who act on this fear only compound the tragedy of their disease. We must offer patients effective advance care planning so they can feel confident they can choose to avoid a prolonged dying of months to years with suffering and burdens. Then, many will ironically choose to live as long and as well as possible--and benefit from improvements in the medical and non-medical management of their disease.

Advance Care Planning for Advanced Dementia needs research funding to develop and to implement--even if other researchers discover new drugs that delay the onset of symptoms or slow down their progression. We know that changes in the brains of dementia patients begin one or more decades before clinical symptoms emerge. We also know it takes many years to prove the safety and efficacy of new drugs and to adopt a policy to implement widespread treatment. Realistically, most of the 76 million baby boomers predicted to get dementia are still likely to become demented. Even if a new drug were available today, patients afflicted with Alzheimer's disease who do not die of another cause will eventually reach the stage of Advanced Dementia. Most importantly, when they do reach the advanced stage of dementia, these patients will then have only their Advance Directives on which they can rely, to control how long, and how much, they must sufferbefore they die.

To reduce end-of-life suffering of millions of victims of Alzheimer's disease and their loved ones, we must thus fund research programs that will: 1) develop new Advance Directives that are easy, effective, and acceptable to both patients and physicians, and 2) train professionals to honor Advance Directives and to recommend their clients and patients have the discussions and complete the forms...now, while they still can.

Sincerely,

Stanley A. Terman, PhD, MDMedical Director and CEO of Caring AdvocatesCarlsbad, CA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 26, 2012

SUBJECT:  National Plan to Address Alzheimer's disease - Comments/Feedback

My father is the third person I know to be diagnosed with Alzheimer's disease. First was my uncle who passed away in 2005 and then my aunt or father's sister who, although 6 years younger has had it for over two years now.

The impact of this illness on the family is devastating. There is no one place to go for help or all the information you need. It takes a village to handle an aggressive, geriatric Alzheimer's family member. As a caregiver one needs to find out as much as possible as quickly as possible to get the help needed for a loved one. Nobody tells you all the challenges you will have and the financial impact it has on the family as well.

My father was normally an intelligent man, very good with mathematics, science and spoke English, Spanish, Italian and Portuguese. Now we see him unable to handle his finances, becoming increasingly aggressive, suffering from delusions and hallucinations regarding our mother who he has been married to for 62 years.

Due to the fact that a mental healthcare power of attorney was not signed since the lawyers don't mention that when you go to get your will and other papers in order, we had to apply for emergency guardianship to get my father admitted to a level one psychiatric facility. After he is there for three weeks and thoroughly evaluated we are told he cannot come home due to delusions regarding our mother. Now we have to find someplace for him and try to find resources to help us. Unfortunately we end up putting him in a group home which we think is the right thing since it is similar to his home and the advice we get from social workers as well as companies such as Care Patrol, that have familiarity with this illness. Since we have no experience we follow the guidance of these "professionals." Unfortunately in our case perhaps also due to the stressfulness of the situation we did not make the right decision. The home was nice but the caregiver, although a nurse, was not there most of the time, and the other caregivers were Pilipino and did not understand English very well.

The situation gets worse when my brother goes to visit my father and he is in bed at 7:30 since the caregivers don't seem to want to be bothered with the patients. When he arrives my father gets up from bed and falls and the door is locked and the caregivers can't seem to figure out how to get the door opened. My brother finally does and dad is on the floor. The caregivers just leave the area and my brother and his son help my father get back into the bed. My father seems to be in a drug stupor and his eyes roll back in his head. I get a frantic call from my brother and call the hospice since he was on palliative care and ask them to send a nurse immediately since the nurse who owns the group home is not there. I also leave an urgent message for her, which is never returned. I wait and then call for the nurse at the hospice that is on call to find out that she was denied entry into the home by the caregivers who told her he was sleeping and to come back the next day. When I confront the owner of the home the following morning she insists that she called me even though there is no record on my answering machine or caller id on the home or cell phones. Then she also indicates that her mother told her that nobody came to the door from the hospice, which was an outright lie. I immediately started looking for another facility but it was difficult since they are all extremely expensive and my mother is alive and living with physical disabilities at home and all of my father's social security, pension and VA benefits (which I applied for since he was a WWII veteran) have to go in their entirety to his care and we still fall short.

During the time I looked for a facility I asked the group home owner not to transport my father anywhere since there was an issue when we brought him home for lunch prior to that. I had met him at a follow-up appointment with his neurologist and she said we could try to bring him home to see how it went. The first time we tried it he seemed ok but it was after an appointment for a vision test and he refused to get in the car unless we took him home. On that occasion, he managed to get his checkbook which we later found out about since we could not locate it to pay the bills.

The following week he had a dentist appointment due to periodontal disease which we needed to attend to. After that appointment , when we brought him home, he became very agitated and pulled a knife out of a drawer, which usually had only papers(so we can only imagine he had placed it there the week before, since we did not). He sat down and said he was not going back to the group home or as he called it, a jail. Then he said he would kill my husband if he ever saw him again since he was the one who, with my sister, brought him to the hospital. I asked him to return the knife and he took it and put it under some papers behind him. This wasn't a small knife it was a large carving knife. I asked for it back but he refused and then went out back and started cutting plants with it and ended up coming in the house without it. He had hidden it. I sent my sister out to retrieve it and she found it in a bucket outside. I took that knife and the rest that were in the house and put them in the trunk of my car. While I did that he went in the back yard and left from the gate on the side and was halfway down the block on foot. I ran to catch up with him and my sister called the police since we were very concerned and needed to get him back to the group home. When the police came he told them he would go back with us and when they left and we were a few blocks away he lunged over the back seat and grabbed my steering wheel and tried ripping the keys out of my ignition and then grabbed the gear shifter to get the car out of gear. I immediately jammed on the breaks and told my sister, who was sitting next to me, to call 911 and that is when he tried to grab the phone from her. I told him I would go back to the house and proceeded slowly to give the policemen a chance to get there. I went past the house and he became agitated and tried getting out of the car but could not since the child locks were on the doors. Unfortunately I forgot the window locks and he was able to open the window and got his body out up to his hips. I had to stop the car and get his feet back in. This is 5'8" man who weighs 158 lbs. I am only 5'3" and weigh 130. This time four police cars came and the officer ended up having to put my father in his squad car and take him back to the home.

Despite the incident that happened and the fact that the group home owner knew about what happened and was told not to take him out, her husband took my father to the bank a couple of weeks later and the bank rep called my mother and then me since my father was requesting his social security number to take out money.

When I finally found a decent place for my father that specializes in Alzheimer's and dementia care, the group home was very rude and unprofessional with the nurse who came to assess him and asked them in front of my father if they were going to take him to a psychiatric facility. So in addition to all the stress now we had to deal with a group home that was manipulating him so he would not leave. He was also writing them checks, which I got back, but we closed the account to keep anyone from taking advantage of him. He had promised money to them, wrote checks to his attorney who was appointed by the court and was promising thousands to the staff and doctors in the hospital where he was assessed.

On top of everything we ended up getting calls from Elder abuse since the owner of the home was apparently upset that we were taking him out and kept arguing that he wasn't ill despite the medical records from a neurologist and psychiatrist.

Our family has been going through hell. On top of all this there was a tremendous amount of paperwork to get VA benefits, get medications and other medical issues taken care of and the legal expenses for guardianship are bleeding my parent's dry. The emotional impact on our mother and the rest of us has been awful as well.

I tell you all this so you can see what it is like since none of us ever imagined how awful this would be. I don't think anyone knows what it is like until they experience it firsthand.

Waiting until 2025 is too late. In my visits to many facilities I have seen people in their 40's and 50's with the disease and it will only get worse as the baby boomers age. With twice as many of them as their parent's generation we are in for a healthcare meltdown if something isn't put in place soon. We need to do something now. I am sure we are not the only family going through this.

There should be more research into different modalities (allopathic, homeopathic, naturopathic, etc.) to address this illness. I have read that there are studies being done regarding a cancer medication that is on the market that reduces the amyloid plaque in the brain. This is the website: http://www.case.edu/think/breakingnews/breakthrough.html.

I have also read about a possible treatment or preventative in raw coconut oil by a doctor who used it on her spouse: http://www.coconutketones.com/whatifcure.pdf. Perhaps the cure or prevention lies in a combination of different modalities and all should be considered.

Families need more financial assistance and better resources where they can find all or most of the information needed with respect to legal, medical and assisted living resources as well as support groups to help families get the assistance they need as quickly as possible. Most of what is out there now is just "you are on your own" looking though websites in the midst of a crisis trying to find the help and guidance you need or other families at support groups trying to help each other. When a family is in constant crisis they need as much assistance/guidance as quickly as possible to help them navigate the system of care so they can make the right decisions for their loved one.

I agree with all of the findings but it must also be noted that some co-occurring chronic conditions such as sleep apnea (http://www.newschief.com/article/20111229/news/112295021) hearing loss (http://www.hopkinsmedicine.org/news/media/releases/hearing_loss_and_dementia_linked_in_study) and periodontal disease (http://www.breathproblems.com/link-between-periodontal-disease-and-dementia.html)should also be included in annual geriatric screenings since they can be directly linked to causing dementia and may be overlooked. In addition something should be put in place regarding hearing loss and the prohibitive cost of hearing aids. Perhaps insurance companies can increase fees by a few dollars a month on their premiums to include some coverage for hearing aids. Everyone is impacted by hearing loss of a senior citizen: family, motorists who drive on the roads along with them, and anyone who the hearing impaired interact with. Since hearing loss can be linked to dementia making hearing aids more affordable through some sort of coverage could help in part, to address this issue.

Anyone directly related to the care of a patient with dementia or Alzheimer's and affiliated with a medical facility, assisted living, or group home should need to be certified to care for a patient with this illness and display that certification where it is visible to family who are looking for care for their family member. There are people who claim to know how to handle patient s with this illness, yet do not, and tend to take advantage of the family as well as the person with the illness.

There should be clear guidelines in place as to what the group homes can and cannot do such as taking a dementia patient to the bank to take out money. I bring this up since this happened with my father.

Medical assessments in the home would help greatly as well since it can be impossible to get a dementia patient to the doctor or hospital unless you have a mental health care power of attorney. If a patient is hospitalized and determined to have dementia, a mental health care power of attorney should automatically be granted without the family having to dish out thousands of dollars to an attorney when the person has received a neurological and psychological evaluation by qualified physicians. This would save the families of these patients thousands of dollars which can be used for their care. A regular health care power of attorney is insufficient since we were told that Alzheimer's and dementia are considered physical illnesses with psychological manifestations. Without a mental health care power of attorney the family has to file for emergency guardianship and then permanent guardianship which can cost upwards of $20,000. This is a progressive disease with no known cure at this point. It is ridiculous to penalize an already suffering family to have to deplete their savings when their loved one is only going to progress in mental deterioration and obviously needs a guardian. Many times they feel that they are not ill and will continue to fight and deplete their funds further until they end up on ACCHHS (Medicaid), which in turn just depletes the government's funds further. If this is a necessity perhaps some cost containment should be put in place so families aren't hurt financially by exorbitant legal fees.

Another issue is medication. The VA indicates it can help with the cost of medication but you have to bring the patient into their facility. Once they are in a memory care facility they are not always amenable to being transported so it would be of great help to have a VA rep come to the patient facility to assess them for the medication benefits or just to have the paperwork from the doctor diagnoses serve as proof that the person needs the medication and provide it and delivery at no cost to the veteran.

The facility that my father is currently in provides dental care via mobile dentistry. It would also be beneficial to have the same with respect to mobile hearing units to help many of the residents in these facilities to get the hearing assessments and hearing aid cleaning, hearing aids, wax removal, etc. to ensure that they can hear effectively. Mobile vision care would also be a plus to ensure that the patients are seeing well or are not developing illnesses of the eye.

Finally decent memory care facilities are very expensive (the one our father is now at costs $4,338/mo.) and that it would help greatly to have some sort of coverage to help as the only thing available is long term care insurance which many people do not have and once you are diagnosed with Alzheimer's, is no longer an option.

I hope you will take these suggestions into consideration in your National Plan. After going through all of this first hand I can tell you that these changes are greatly needed and would help all the families out there who are going through all of these challenges.

Thank you for your time and consideration.

Olga L Molinari(daughter/caregiver/co-guardian to a parent with Alzheimer's disease)

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 26, 2012

SUBJECT:  Public Comment on National Plan to Address Alzheimer's Disease

Thank you for the opportunity to offer public comment on this important and much needed national plan.

From my experience as a nurse working with several community hospices over the past 15 years, it's often a struggle to utilize antipsychotics (i.e. Haldol) in skilled nursing facility setting. Nursing facilities have many regulations which are well-intentioned to provide safe care for residents.

However, I would just like to offer that haloperidol is often preferred over lorazepam for agitation, terminal restlessness for many patients, especially Veterans with a history of PTSD. We have found that these patients may benefit from a medication that may help them to think more clearly, so that they feel less vulnerable by feeling more in control.

Respectfully,

Mary Zuccaro, MSN, ACHPNHospice Palliative Nurse Practitioner

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 26, 2012

SUBJECT:  Re: Mental Health Concerns

This is to request that the Committee address the mental health concerns of persons with dementia and their caregivers.

Sincerely,

Carolyn Clemente, A.C.S.W,Bronx, NY

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 26, 2012

SUBJECT:  Dimentia

Working with individuals with dimensia requires services that are unique and tailored to address those needs which in our mental health facilities they are address all in the same, and they are not.

Solangel Griffith

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 26, 2012

SUBJECT:  AAN comments on draft National Plan to Address Alzheimer's Disease

Please accept the attached comment letter from the American Academy of Neurology (AAN) on the recently released National Alzheimer's Project Act (NAPA) Draft National Plan To Address Alzheimer's Disease. The AAN is proud to support the overall Plan and fully supports the vision of a nation free of Alzheimer's disease.

The AAN stands ready to assist in these important efforts and remains committed to partnering with other organizations to prevent and reduce the burdens of this devastating disease.

Sincerely,

Katie M. ShepardSenior Manager, Medical EconomicsAmerican Academy of NeurologySt. Paul, MN

ATTACHMENT:   AAN Comments - National Plan to Address Alzheimer's Disease.docx.doc

Available as separate links:
AAN Comments on Draft National Plan to Address Alzheimer's DiseaseAmerican Academy of Neurology - RE: AAN Comments on Draft National Plan to Address Alzheimer’s Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 26, 2012

SUBJECT:  Comment

Please make sure that the U.S. Department of Health and Human Services addresses the mental health needs of people with dementia and their caregivers in its final plan.

Miriam SchwinderService Coordinator, Holocaust ProgramPesach Tikvah - Hope Development, Inc.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 26, 2012

SUBJECT:  Comments to the Draft National Plan to Address Alzheimer's Disease

There are numerous improvements in the draft national plan to address Alzheimer's disease from the initial framework plan. Additional areas of the plan still need strengthening and improvement. CCAL appreciates the opportunity to submit comments to help strengthen the draft plan. The comments follow.

General

  • CCAL suggests that the plan include the words "other dementias" and be known as the National Plan to Address Alzheimer's Disease and Other Dementias. The terms "Alzheimer's" and "dementia" are often used interchangeably. Many internists and family practice physicians (among others in the health care field), for example, are still not well educated about assessing and diagnosing Alzheimer's disease and use the general term "dementia" to explain cognitive decline to patients and their families. The addition of the terminology "other dementia" is more inclusionary and desirable.
  • Person-centered care is the widely recognized gold standard of services and supports for people living with Alzheimer's disease and related dementias (PWD) (Alzheimer's Association, 2006; Edvardsson, et al, 2010). It is a foundational aspect of the Affordable Care Act of 2010. The draft plan is silent about person-centered care. CCAL suggests that the plan integrate the philosophy and orientation to person-centered care throughout the plan.

The Challenges Section (page 4)

  • Notably missing as a national challenge is the over prescription and utilization of antipsychotic medications as a first line of management for behavioral challenges experienced by PWDs. The medical community as well as the formal and informal caregiver communities need to be educated about non-pharmacologic approaches to such behavioral challenges as agitation. Medications should be used only if and when non-pharmacologic approaches have not been effective. There is currently a dearth of readily accessible information about recommended non-pharmacologic approaches and practices.
  • Also missing as a national challenge is recognition that the quality of programs and services for PWDs who reside in residential long-term care (assisted living, nursing homes) across the nation continues to be uneven and often less than optimal. There is no national focus on or effort to address quality for these long-term care programs and services despite the fact that the number of people living with dementia will increase over fifty percent by 2030.

Plan's Three Guiding Principles (page 5)

  • CCAL applauds the second Guiding Principle that supports public-private partnerships. We recommend that the detail for this principle be expanded to specifically include dementia experts who represent the practice, policy, and research sectors. All too often senior executives are included on advisory panels solely because of their positions. Unfortunately they often lack actual dementia expertise and experience. It is vitally important that the national plan be developed, planned, and implemented by a diverse group of dementia experts who can provide "face validity" both to the plan and the process of its development and implementation.

References

  • Alzheimer's Association, 2006. Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes.
  • Edvardsson, D., Fetherstonhaugh, D., Nay, R. 2010. Promoting a continuation of self and normality: person-centered care as described by people with dementia, their family members and aged care staff. Journal of Clinical Nursing, 111/j.1365-2702.

Thank you for the opportunity to submit comments on the draft national plan to address Alzheimer's disease.

Sincerely,

Jackie PinkowitzChair, Board of DirectorsCCAL

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 25, 2012

SUBJECT:  RE: Draft National Plan to Address Alzheimer's

I have just two comments on the National Alzheimer's Plan which is mostly nice sounding rhetoric that I hope helps with this devastating disease.

First, Goal 1 (an effective treatment by 2025) just seems to me arbitrary and unrealistically optimistic. Of course that would be wonderful but as a physician specializing in geriatrics and Alzheimer's I see little hope of this being accomplished in the foreseeable future or perhaps ever. How will this be done by 2025 when there are no significantly effective drugs on the market at this time -- this is only 13 years away and the drug development/approval process takes many years. Hopefully the research summits proposed will help. $50-80 million in new funding seems a pittance that can't possibly make a significant difference. We have had a "war on cancer" with much higher rates of funding for about 40-50 years now with some modest positive results but certainly no cure for cancer.

Second, in my opinion, Action 3.D.2: Monitor, report and reduce inappropriate use of anti-psychotics in nursing homes, has no place in this report. Most of the other items in this report are positive, optimistic goals. This is a narrow and arguable negative. In my opinion again as an experienced geriatrician and long term care physician, I feel the issue of antipsychotics in nursing homes is overblown and not significant enough to be a major national priority. Inappropriate use of medications is one thing that of course must be minimized, though what is appropriate is highly individualized and subjective. However the "off-label" use being considered inherently inappropriate or fraudulent is completely wrong. Physicians and nursing homes are already extensively educated and regulated on this issue. All drugs are commonly and legally used for many "off-label" scenarios and there is nothing wrong with that if the medical judgement is reasonable and the patient benefits. Unfortunately Alzheimer's patients often have uncontrollable anxiety and agitation and until a better therapy comes along, antipsychotics are often the only answer. "Conflicts of interest" among pharmacists and physicians have NOTHING to do with this issue. Clinicians simply often have no better solution for dementia related psychosis and agitation at this time. I am an active member of the American Medical Directors Association and vehemently disagree with their their "politically correct" approach to this difficult issue (they have gone along with government suggestions to more vigorously educate and crack down on physicians and nursing homes).

Perhaps a brief mention of better treatments for behavioral and psychological symptoms as well as cognitive symptoms and "cure" would be appropriate under goal 1. Otherwise I think this entire paragraph 3D2 is inappropriate in this report and should be completely deleted.

Thanks for your attention,

Todd Goldberg, MD CMD FACPAssociate Professor and Director of GeriatricsWest Virginia UniversityCharleston Division PresidentWest Virginia Geriatrics Society

==========

From: Matheny, HelenSent: Tuesday, March 20, 2012 6:07 PMSubject: Draft National Plan to Address Alzheimer's

For your information, attached is the first draft of the National Plan to Address Alzheimer's Disease. As a non federal member of the national Alzheimer's Disease Advisory Council I encourage each of you to review the draft and provide comments. Your perspective as a physician is critically important. HHS is seeking input on the draft National Plan through March 30, 2012. Please send your comments to napa@hhs.gov. Also, please feel free to copy me. I serve on the Council's Clinical Care Subcommittee and would greatly value your suggestions. I expect the second draft of the plan to be available mid-April.

I look forward to hearing from you.

Best regards,

Helen M. Matheny, MS, APRDirectorWest Virginia Alzheimer's Outreach and Registry ProgramBlanchette Rockefeller Neurosciences InstituteMorgantown, WVhttp://www.brni.org

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 25, 2012

SUBJECT:  Alzheimer's Disease Plan

The suffering of people with Alzheimer's Disease and their family caregivers is invariably compounded by depression and anxiety. These are among the most devastating daily effects of the disease, undermining the quality of life of both caregivers and patients and limiting their ability to contribute to society in a meaningful and economically viable way. Any effort to improve the management of the disease should therefore include a program of psychological intervention as well as medical research and therapy.

Judith CohenPast PresidentMedical Information Services, Inc.New York, NY

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 25, 2012

SUBJECT:  National Plan to address Alzheimer's Disease

My sister died from Alzheimer's Disease on Oct. 5, 2011. My sister had Down syndrome.

The proposed plan fleetingly mentions "intellectual disabilities," which is woefully inadequate to address that fact that people with Down syndrome have a higher incidence of Alzheimer's Disease than the general population.

"Intellectual disabilities" must be replaced with Down Syndrome since it is these people who experience it at such a high rate at this time. "Down syndrome and other Intellectual disabilities" would be an acceptable term.

Sincerely,

Deborah MetzelWaltham, MA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 24, 2012

SUBJECT:  Inclusion of Persons with IDD in NAPA

The Developmental Disabilities Nurses Association supports the specific inclusion of persons with intellectual and developmental disabilities in the National Alzheimer's Project Act (NAPA) as requested by the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). In most cases, nurses assess individuals with IDD on a more frequent basis than primary health care providers, and thus may note signs and symptoms indicative of early stages of dementia in the settings in which individuals reside or spend their days. This increases the likelihood of prompt referral for diagnosis and treatment.

We sincerely hope that this medically underserved population, some of whom by the very nature of their developmental disability are at increased risk for Alzheimer's disease, are considered by the NAPA council for inclusion in its proposal.

Respectfully and on behalf of the Board of Directors of DDNA,

Mary Alice Willis, RN MSNExecutive DirectorDevelopmental Disabilities Nurses AssociationOrlando, FL

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 23, 2012

SUBJECT:  Mental Health needed !

People diagnosed with dementia frequently have mental health conditions such as depression and anxiety disorders.

In addition, their family caregivers are at high risk for mental and physical health problems.

There is a great need to recognize and treat these conditions, so that patients' cognitive functioning and quality of life is improved( or at least maintained).

Families of people with dementia have the regular challenges of us all; in addition family caregivers have the responsibility of caring for an adult whose behavior can be quite erratic. The unpredictability of their loved ones' behavior can lead to anxiety and depression.

Please apply the power of your position to bring relief to these families.

Thank you.

Zenobia MannNew York, NY

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 23, 2012

SUBJECT:  Critical Path Institute Letter or support

Attached, please find C-Path's letter of support.

Kind regards,

Kimberly A. Cross for Carolyn Compton, MD, PhD.Executive AssistantCritical Path InstituteTucson, AZhttp://www.c-path.org

ATTACHMENT:   SKMBT_C28012032312400.pdf

Available as separate links:
Making the Case for Public Private Partnerships for NAPACritical Path Institute - Making the Case for Public Private Partnerships for NAPA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 23, 2012

SUBJECT:  Feedback on Draft National Plan to Address Alzheimer's Disease

Please see below for my feedback on the National Plan to Address Alzheimer's Disease. I am a gerontological clinical social worker with over ten years experience in the field of dementia care. I was formerly the Director of Social Services at the Alzheimer's Foundation of America, and now I am a doctoral candidate who teaches and conducts research on dementia care at Columbia University School of Social Work.

Congratulations on creating such a progressive plan of action. I hope that my feedback is of value. I would be delighted to get involved in any of the efforts related to finalizing this national plan or taking action on any of the activities outlined within the plan. Please contact me with any questions, comments, or concerns.

Positive Feedback:

  • The plan is overwhelmingly comprehensive in breadth of scope and depth of detail.
  • The lists of challenges and guiding principles for the national plan are thoughtfully crafted and easily justified.
  • This plan looks to make substantial achievements toward fulfilling the objectives of NAPA with both immediate and long-range potential benefits to our citizens.
  • The inclusion of diverse stakeholders' input, as well as plans to coordinate efforts across federal agencies, shows dedication to setting realistic priorities and working toward meaningful outcomes.

Constructive Criticism:

Action 2.A.2: Encourage providers to pursue careers in geriatric specialties

  • The professions identified in this Action Statement are surely appropriate targets of the relevant activities, but the exclusion of the social work profession is a major oversight. This oversight is not repeated in Action 2.A.3 on dementia-specific guidelines and curricula, which shows some acknowledgement on the part of NAPA representatives of the value of a competent social work workforce. Social workers are integral members of the professional care teams in every setting and program of health, mental health, and aging services. They perform essential roles which are crucial to the successful delivery of those services, and this is especially true in the context of the multidimensional, bio-psycho-social domains of need in dementia care. Look to the work of the John A. Hartford Foundation's Geriatric Social Work Initiative for information on the importance of shoring up for a gerontologically-competent social work workforce, as well as for models of successful workforce development.

Action 2.A.3: Collect and disseminate dementia-specific guidelines and curricula for all provider groups across the care spectrum

  • The Action Statement suggests a plan for HHS to seek input from public and private entities to complete this activity, but it does not detail a process for identifying or selecting providers of such input. With regard to collecting social work guidelines and curricula, I gladly offer my assistance. There are few such guidelines on social work practice in dementia care, and even fewer curricula. However, this is truly my area of expertise, I have lists of the few resources available, I have developed a graduate social work course exclusively on dementia, and I know of several other experts who would also be willing to assist in this effort.

Action 2.A.4: Strengthen the direct-care workforce

  • The direct-care workforce includes both those who work in private homes and those who work in facilities, yet this Action Statement is focused exclusively on nursing home personnel. Failure to include home health and home care personnel in this effort would be a tremendous oversight. The preferred location of care for nearly all citizens is their own home, the quality of home care services is known to be inadequate for the general population, and to date there are no research studies which have attempted to examine appropriate home care service models, training protocols, patient and family outcomes, and worker outcomes related to dementia care in the home environment. The home health care and home care industries must be strengthened if we are to avoid a crisis in care. Federal money and coordinated efforts among federal and state agencies, and private industry stakeholders, must be dedicated to addressing improvements in the quality of home care services for individuals living with dementia.

Action 3.D.1: Educate legal professionals about working with people with Alzheimer's disease

  • The importance of reducing the abuse, neglect and exploitation of individuals with dementia cannot be overstated. Toward this end, the Action Statement should be revised to call specific attention to the need to educate District Attorneys and Assistant District Attorneys about responding to charges brought against alleged perpetrators as a result of police and Protective Services investigations. This is particularly important for victims with dementia who lack the capacity, and often the availability of capable advocates, necessary for seeking justice and protection. For example, financial exploitation charges filed by Protective Service agents are rarely addressed by District Attorneys, and, as a result, the perpetrators are not brought to justice and the elders' funds are not restored.
  • Adult Protective Service programs are generally overwhelmed and understaffed. Certain states have taken the lead in developing more highly effective programs for dealing with elder mistreatment, such as the Massachusetts Executive Office of Elder Affairs which supports programs for Elder Protective Services and Elders at Risk. These elder-specific programs should be required in each state. In addition, all Protective Services agents should have access to dementia-specific education. When the victims of elder abuse are individuals with dementia, their vulnerabilities are unique, the investigations are additionally complex, and the intervention options are distinct.

Action 3.E.2: Examine patterns of housing and services

  • Efforts to understand professional care services must now look beyond simple profiles of service availability and use in order to study the effectiveness and efficiency of the services. Access and use of a service are important issues to measure, but the quality of care provided by these formal service systems (most of which are regulated at the state level) needs to be studied as well. Anecdotal and research-based evidence continually suggests that consumers do not receive adequate care, families are not relieved of their burdens by using formal care services, and community-based services do not effectively postpone nursing home placement. Investments in improved quality of care would likely result in significant long-range savings due to reduced worker turnover, delayed family burnout, delayed nursing home placements, reduced hospitalizations for avoidable medical and behavioral complications, and fewer transitions between care settings.
  • This Action Statement calls for an in-depth analysis of the National Survey of Residential Care Facilities, but should also include the further development and analysis of the National Home and Hospice Care Survey.

General concern-

  • This plan does not provide adequate attention to mental disorders commonly experienced by people with dementia and their caregivers. Dementia frequently co-occurs with mental health conditions such as depression and anxiety disorders. In addition, family caregivers are at high risk for mental and physical health problems. Recognizing and treating these conditions plays a vital role in improving patients' cognitive functioning as well as the quality of life of people with dementia and their caregivers.

Best wishes,

Daniel B. Kaplan, LICSW, LMSW, CSW-G, QDCS

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 23, 2012

SUBJECT:  Mental Health Needs of People with Dementia

Please include the mental health needs of people with dementia and their caregivers in your final plan.

Erin Vogt, LCSW, ACSW, CMCClient Care CoordinatorDutton & Casey, P.C., Attorneys at Lawhttp://www.duttoncaseylaw.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 23, 2012

SUBJECT:  mental health care for older adults w/dementia and their caregivers

Please become more informed about the vital and large voting population who have a loved one with dementia or depression or anxiety. The Baby Boomers are one of the largest groups around and have the most voting power as well as the needs for supportive services to keep their loved ones at home. It seems when it comes to home care, respite services and other supportive case management services and counseling are the first ones to be cut. We once had an older adult program here in Illinois and that was cut (temporarily once and completely the 2nd time around). The message you are sending the public is that our government does not value the family as a place for care recipients to grow older (it is a proven statistic that family members experience less depression in the family home than in a nursing home facility). Older Adults deserve our respect and they deserve to continue to have quality care. Please do not let our government succumb to the prejudice of ageism. All people have value especially the old--who have much to still teach us.

Cathy KnowltonHuman Service CenterRed Bud, IL

ATTACHMENT:   senior issue brochure.doc

Available as separate links:
Offering Quality Care to our Seniors BrochureHuman Service Center - Offering Quality Care to our Seniors

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 23, 2012

SUBJECT:  Mental Health Needs of People with Dementia and their Caregivers

I work with many clients with dementia and their caregivers. I am also a caregiver of a parent, my Father, with Lewy Body Dementia. I see first- hand the mental health issues that occur with dementia. My Masters' degree is in Health Sciences and I still get overwhelmed at times with things that my father experience. Please do not take this lightly, address the mental health needs of people with dementia and their caregivers in your final plan. Thank you.

Cheryl Davis, MHS, CIRS-AProgram Services DirectorLifescape Community Services, Inc.Rockford, IL

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 23, 2012

SUBJECT:  Re: Final Plan Comments

Michael,

Great letter. Send it.

==========

From: Michael GardnerSent: Fri, Mar 23, 2012 17:06:38 GMT+00:00Subject: Final Plan Comments

Please see attached document, thanks.

Michael J. Gardner, MS Ed, CHESAssociate Mental Health SpecialistCalifornia Mental Health Planning CouncilSacramento, CA

THIS MESSAGE WAS SUBMITTED BY THE FOLLOWING PEOPLE DURING THE MONTH OF MARCH 2012:

  • John Ryan (submitted March 23)
  • Cynthia Jackson Kelartinian, PhD, Executive Director, Heritage Clinic, Pasadena, CA, http://www.heritageclinic.org (submitted March 23)
  • Adrienne Cedro-Hament (submitted March 23)
  • Carmen Lee (submitted March 23)

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 23, 2012

SUBJECT:  Final Plan Comments

Please see attached document, thanks.

Michael J. Gardner, MS Ed, CHESAssociate Mental Health SpecialistCalifornia Mental Health Planning CouncilSacramento, CA

ATTACHMENT:   1.doc

Available as separate links:
Comments from the California Mental Health Planning CouncilComments from the California Mental Health Planning Council

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 23, 2012

SUBJECT:  Include Support for MH for older patients

I understand that the present draft legislation in HHS needs to further address the MH needs of people with dementia and their care givers.

Dementia can frequently co-occur with mental conditions such as depression and anxiety disorders. Additionally family care givers carry an increased risk for mental and physical health problems. Please consider including these aspects of care for those with dementia in the current legislation.

Sincerely,

Judith Slane LCSW

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 23, 2012

SUBJECT:  Alzheimer's Disease

Please address the mental health issues to go along with Alzheimer's Disease. My mother-in-law currently has this disease and suffers from depression and anxiety due to the frustrations that she feels in not remembering things. It is only getting worse as the disease progresses. This is a common issue. Currently she is in a skilled nursing facility because her husband passed away several years ago. He had been her caretaker. This disease takes a great toll on anyone who keeps their loved ones in their home, because constant vigilance is needed on a regular basis. This isolates the caregiver as well as the one suffering from Alzheimer's. This can lead to depression for the caregiver. Please address the mental health aspects that accompany this disease in developing your plan regarding Alzheimer's.

Sincerely yours,

Mary RichCASA Program ManagerCASA of Dutchess CountyMental Health America of Dutchess County, Inc.Poughkeepsie, NY

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 23, 2012

SUBJECT:  Personal comments on the draft National Alzheimer's Plan

Yesterday I sent you a letter regarding the draft National Alzheimer's Plan from a group of national experts on dementia and behavioral health.

Today I am sending a personal letter that is much more detailed. In it I provide comments and suggestions section by section. I hope that you will find it useful in identifying parts of the plan that need to be modified so as to reflect the behavioral health needs and opportunities of people with dementia and their families.

I would be happy to help to redraft the plan in detail.

Thank you.

Michael B. Friedman, MSWFounder and Honorary ChairThe Geriatric Mental Health AllianceAdjunct Associate ProfessorColumbia University School of Social Work and School of Public Healthhttp://mf395@columbia.edu

ATTACHMENT:   MBF NAP Letter final.doc

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  Draft National Plan

Thank you for your efforts to develop a national plan to address the growing crisis of Alzheimer's Disease. As an elder law attorney who has worked for many years with low income caregiving families in diverse ethnic communities, I understand the urgency of your work. I applaud your efforts to be both comprehensive and realistic in the development of this plan. My own work with Alzheimer's families began through a program called El Portal -- a Latino Alzheimer's project that was funded through the Alzheimer's DiseaseSupportive Services Program (ADSSP), once called the Alzheimer's Federal-State Matching Grant Program. Later I worked with Asian caregivers through another ADSSP-funded program, the API Dementia Care Network. Like many other elder care professionals in this community, this grant brought me into the Alzheimer's cause where I have worked for over 20 years.

As I look over the plan, I am concerned that I do not see any reference to this program. I believe it is the only federally-funded program that uniquely targets dementia patients and their families with support and education services. Specifically, this is a program that could help to fund the part of the plan devoted to populations disproportionately affected by AD and populations facing care challenges, such as racial and ethnic minorities (Strategy 2H). It could also be referenced in section 2.C.2 as it definitely enhances assistance to people with AD and their caregivers. This program supports and educates people with the disease and caregivers, a significant concern addressed in the plan.

I have heard that there is a possibility that funding for the worthy program may be eliminated and that it has already been reduced. I urge you to use the NAPA planning process to assure that this program remains in place and continues to help develop services for under-served, at-risk populations. It may not be a perfect program but it is the ONLY federal program supporting this work for patients with AD and their families.

Thank you for attending to my feedback. I hope it will strengthen our plan to prepare for the public health crisis that is Alzheimer's Disease.

Sincerely,

Janet Morris, JDElder Law AttorneyBet Tzedek Legal ServicesLos Angeles, CAhttp://www.bettzedek.org

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  dementia and older people

As the baby boomers age we need to address the issues that will arise when some of them will suffer from dementia. Please include that in your bill.

Thanks,

Dr. Batya Lerner

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  Alzheimers Draft

As you revise your policy on Alzheimer's it should also address Dementia which is the onset of this disease. Its inhumane to address one without including this illness.

Thank-you,

Monica D. Haynes,MSW

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  Mental Health needs more attention

Please give more attention to mental health of patients with depression and other problems. There are problems that our elderly have and their family that can be helped with education, direction and other resources that the mental health has available. I am a RN and have seen the work the Mental Health Dept. is capable of giving. So please fund the necessary areas with necessary staff and information.

Dorothy CasselEl Reno, OK

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  plan to address Alzheimer's disease

I applaud your efforts to address such a significant issue as Alzheimer's Disease. I am a licensed social worker who provides services to older adults in Westchester County full-time. Unfortunately, I am highly concerned about the lack of support for those individuals with Dementia and other co-occurring disorders to increase as more baby boomers turn 65.

Please consider revising your ambitious draft plan to incorporate those in need of assistance due to Dementia and other co-occurring disorders.

Best regards,

Tonia Monti

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  Please do not forget mental health needs of those with dementia

This is my professional world, and the co-morbidity of depression, anxiety, delusional disorders, etc. runs high with dementia. Please do not ignore the needs of this sadly ever growing population.

Arleen R. Stern, LCSW, C-ASWCMGeriatric Care Manager Geriatric Care ManagementNew York,NYhttp://www.arleenstern.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  Comments on the Alzheimer's Draft Plan - From National Task Group on ID/DP

We, Drs. Matthew P. Janicki and Seth M. Keller, are the co-chairs of the National Task Group on Intellectual Disabilities and Dementia Practices. On behalf of the National Task Group, we wish to make our thoughts and recommendations available to the Advisory Council with respect to the Draft National Plan to Address Alzheimer's Disease. To complement the National Alzheimer's Plan Act process, the National Task Group was convened and produced a report titled, "My Thinker's Not Working: A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports", which was designed, in part, to develop and enhance community care options for aging adults with intellectual and developmental disabilities. The National Task Group also issued the "National Dementia and Intellectual Disabilities Action Plan" as part of this report. The National Task Group issued this Action Plan in January 2012 in the hopes that it would promote better understanding of how adults with intellectual and developmental disabilities age and how dementia, in particular, affects them.

We note that the issues we identified in the National Task Group's report, which was submitted to the Advisory Council at its January 17th meeting, has many parallels with those raised in the Draft Plan. Our report summarized and addressed some of the challenges facing the nation due to the increasing rate of dementia found in older people with Down syndrome and other intellectual disabilities. Our report also noted that older adults with intellectual and developmental disabilities have special needs that at times require different actions than those provided for people in the general population. Alzheimer's disease affects everyone; but not everyone can be treated the same way when they are affected by this disease.

We have submitted these comments in order to clarify and provide feedback to the Advisory Council regarding its Draft Plan. First, we would like to note that the National Task Group is pleased that the Draft Plan contains mention of intellectual disabilities (in Strategy 2.H) as this group of Americans is composed of a significant number of individuals who are at exceptionally high risk for Alzheimer's disease. We also would like the Draft Plan to contain at least mention of some general issues that we have raised in our Report and also have more elaboration on some key specific issues affecting people with intellectual disabilities.

Given this, we'd like to offer the following comments:

  1. Missing mention of the significance of Down syndrome in Alzheimer's research

    We are concerned that the text under Goal 1, neglects mention of the research with respect to the needs of people with Down syndrome, a group of individuals expressing a particular high risk for Alzheimer's disease. Certainly sustained research is warranted to better understand the etiology and course of dementia in this group of individuals. Additionally, notwithstanding the competing beliefs of whether research involving people with Down syndrome will benefit general research into the nature and cause of Alzheimer's disease, we feel that continued support of research concerning and involving people with Down syndrome will not only potentially benefit the general population, but will certainly benefit the thousands of adults aging with Down syndrome and who are at high risk for and are affected by early onset dementia. Like individuals with genetic mutations resulting in early onset Alzheimer's disease, individuals with Down syndrome also demonstrate early onset of symptoms and more research into this phenomenon is necessary. We would like to emphasize that focused research into a relatively homogeneous population such as individuals with Down syndrome and Alzheimer's dementia can provide important clues when generalizing to the larger population of people with Alzheimer's but absent Down syndrome.

    Thus, we strongly recommend that the Draft Plan include mention that given the high risk of Alzheimer's disease among adults with Down syndrome, there is the continued need for focused basic and treatment research involving people with Down syndrome -- and this should be included under Goal 1.

  2. Mention of the special programmatic and care challenges faced by people with intellectual disabilities

    We note with satisfaction that the Advisory Council's Draft Plan recognized the importance of the special programmatic and care challenges faced by people with intellectual disabilities and included mention of this in Goal 2, under Strategy 2.H (Action 2.H.1). However, we would like to recommend that mention of the special circumstances of adults with Down syndrome and other intellectual disabilities receive mention earlier in this section, so that it is clear that the Strategies included under Goal 2 apply equally to this population. We would like to see the Draft Plan recognize that Alzheimer's disease mostly impacts adults with lifelong intellectual disabilities in the same ways as it does other people, but sometimes has a more profound effect due to particular risk factors - including genetics, neurological injury, and deprivation. Further, under the Strategies noted under Goal 2, it is important to propose that any NAPA-related task forces created (as cited in the Draft Plan) not only look into improvements of care for this specific population, but also, and perhaps more importantly, increase awareness, improve screening and early recognition, and conduct population specific clinical trials involving adults with intellectual disabilities.

    Thus, we strongly recommend that the Draft Plan include mention of the special circumstances of adults with Down syndrome and other intellectual disabilities earlier in the second section, so that it is clear that the Strategies included under Goal 2 apply equally to this population.

    Under Strategy 2.B, we would also like to recommend that mention be made of the challenges of carrying out effective screening and diagnoses for dementia among most individuals with intellectual disabilities due to their inherently varying abilities and cognitive functions. When nationally applicable instrumentation is developed or recommended it would be highly beneficial to make mention in the Draft Plan of the need for specialized screening instruments for use with adults with intellectual disabilities. The National Task Group is currently undertaking the development of such an administrative screen, which would have specific application to people with intellectual disabilities who otherwise may not be adequately or successfully screened by tools in existence and applicable to the general population. Recognition of this special need and work by the National Task Group would go far to gain acceptance of a regularized screen applicable to adults with intellectual disabilities.

    We also would recommend -- adding text under Strategy 2.E -- that the notion that community care, as noted in the 2002 Madrid International Plan of Action on Ageing, be the paramount means of long-term 'dementia capable' care delivery. We note specifically the growing evidence-based research that is supporting the inclusion of small group homes -- as a viable assisted living model -- and their role as a potentially powerful alternative care setting for people with dementia, and in particular those with lifelong disabilities. Research in the intellectual disabilities services area has shown this model to be particularly effective in providing quality care for those adults with intellectual disabilities affected by dementia.

    Thus, we strongly recommend that the Draft Plan include consideration of the special challenges in assessing and determining the presence of dementia in adults with certain intellectual disabilities and that any national guidelines produced contain this consideration.

    We also strongly recommend the consideration of the use of small group homes for the community 'dementia capable' care of adults with intellectual disabilities affected by dementia as backed by evidence-based research in the intellectual disabilities field.

  3. Mention of the special support needs of aging caregivers providing long-term in-home care of adults with intellectual disabilities

    As many adults with intellectual disabilities and in particular those with Down syndrome remain in their family homes living with their parents or other family caregivers as they grow older, it is crucial that under Goal 3 inclusion of the challenges faced by these caregivers -- when providing care-at-home to their relatives with intellectual disabilities and dementia -- be given due mention. These 'life-long caregivers' warrant special attention in the Draft Plan as they are providing an important and crucial bulwark against costly institutionalization and oft-times inappropriate admissions to long-term care facilities. They are also often vexed by emerging symptoms of dementia in their adult children who have successfully mastered many general activities of daily living and now are manifesting decline. Special mention to the situations of these lifelong caregivers should be made in the Draft Plan. In this context, the National Task Group also recommends that Strategy 3.C.1. be amended to recognize that in many settings concerned with adults with intellectual disabilities, decisions are often made by proxy (and not by 'middle-aged adults') and that adults with intellectual disabilities are not the ones planning for their own long-term care needs. Thus, consideration should be given to enabling parents or other family members, providing primary care, to undertake productive long-term care planning.

    Thus, we strongly recommend that the Draft Plan include consideration of the special challenges faced by life-long caregivers of some persons with intellectual disabilities.

  4. Mention of the enhanced public education resources related to intellectual disabilities

    Under Goal 4, we strongly recommend including the needs of family caregivers and people with intellectual disabilities under public education campaigns and that the greater coordination efforts by government and the voluntary sector should get mention. As the state developmental disabilities authorities (agencies) are instrumental in helping organize state functions and programs with respect to intellectual and developmental disabilities it would be extremely beneficial to include these entities (and state developmental disabilities planning councils) in any public education efforts at the state level. Also, education and training for health professions with respect to aging individuals with dementia -- especially of the Alzheimer's type -- should be included as part of primary health care education. As there are health care disparities, an aggressive education campaign should involve universities, hospitals, emergency rooms and general medical specialists as it relates to cognitive and functional disability and its detrimental effect on caregivers and quality of life of the individuals with intellectual and developmental disabilities.

    Thus, we strongly recommend that the Draft Plan include consideration of additional and targeted efforts related to public and medical education so that these efforts have a functional effect on helping people with intellectual disabilities affected by dementia.

The National Task Group recognizes that dementia has a devastating impact on all people -- including people with an intellectual disability and their friends, families and the staff who may be involved with them as advocates and caregivers. Given this, we are very pleased that the Advisory Council recognized the import of the special challenges faced by people with intellectual disabilities and included mention of this group in Strategy 2.H. We would hope for those adults with intellectual disabilities currently affected by dementia and those in the next generation who may be affected (as the timeline for the NAPA process encompasses the next 13 years) that the Advisory Council will recognize other areas of inclusion of the specific issues affecting individuals with intellectual disabilities within the Draft Plan and accept our recommendations for additional areas of mention and focus.

We trust the our comments and recommendations will be accepted in the spirit in which they are provided -- as the collective concerns and thoughts of a significant body of professionals, scientists, administrators, family caregivers and advocates, and persons personally affected by dementia -- who are represented by the National Task Group on Intellectual Disabilities and Dementia Practices.

Seth M. Keller, MDPresident, American Academy of Developmental Medicine and Dentistry

Matthew P. Janicki, Ph.D.University of Illinois at Chicago (RRTC on Aging with Developmental Disabilities -- Lifespan Health and Function)

Co-ChairsNational Task Group on Intellectual Disabilities and Dementia Practiceshttp://www.aadmd.org/ntg

ATTACHMENT:   NTG_comments-on_DRAFT_PLAN-3'22'12.pdf

Available as separate links:
Draft National Plan to Address Alzheimer's Disease CommentsDraft National Plan to Address Alzheimer's Disease Comments

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  Mental Health Needs of Individuals with Dementia and their Caregivers

Dementia frequently co-occurs with mental health conditions such as depression and anxiety disorders. In addition, family caregivers are at high risk for mental and physical health problems. Recognizing and treating these conditions plays a vital role in improving patients' cognitive functioning as well as the quality of life of people with dementia and their caregivers.

Please provide access to mental health treatment for people with dementia and their caregivers in your final HHS Alzheimer's Plan.

Kay Smith, JD LCSW

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  Alzheimer's Plan

I'd like to commend the Department of Health & Human Services for developing an ambitious plan to address Alzheimer's Disease.

I would add, however, some concern about its apparent overemphasis on biology and pharmacology. Based on my own clinicial experience, chats with colleagues, and reading of the related literature, I can confidently state this focus is necessary but not sufficient. The mental health (i.e., depression & anxiety) of patients and unpaid caregivers alike is inextricably linked to this disease and its treatment. Should these psychological components remain unaddressed, the costs (financial & human) will continue to mount. Conversely, adequate support can reduce this burden, both at the individual and societal levels.

Experts estimate it will take decades before "cures" for Alzheimer's are discovered, let alone made available (and affordable) broadly. While this remains an appropriate aspirational goal, behavioral treatment of the millions currently afflicted, and support for those trying to care for them, must not be sacrificed.

Thank you.

Benjamin A. Bensadon, Ed.M., Ph.D.Postdoctoral Clinical Research FellowThe University of Oklahoma Health Sciences CenterReynolds Department of Geriatric MedicineOU College of Medicine & OKC VAMCOklahoma City, OK

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  NAPA ADSSP - BT (2)

Please see the attached.

Thank you.

Terese BledsoeLegal SecretaryLos Angeles, CA

ATTACHMENT:   NAPA ADSSP - BT (2).pdf

Available as separate links:
Comments on Draft National PlanComments on Draft National Plan

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  The Geriatric Mental Health Alliance of New York

Please include the impact Dementia has on caregivers. My father has Dementia and my mom's health has taken a turn for the worst. She has been to the hospital (medical) for heart problems because of the stress of taking care of my father. It is essential that you include in the draft plan attention to mental disorders commonly experienced by people with Dementia and their caregivers.

Karen Bachand, M.A.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  Please include provision for mental health needs of Dementia patients and their families

As a Social Worker addressing the needs of seniors with mental health issues, I see how overwhelming the diagnosis of Dementia can be for patients and the people who care for them.

Many people are in denial over the diagnosis and its consequences, and who can blame them?

There is no cure at this time, and more and more support services have been limited.

Please provide for the mental health needs of patients and their families, as the following are increasingly evident:

Dementia frequently co-occurs with mental health conditions such as depression and anxiety disorders. In addition, family caregivers are at high risk for mental and physical health problems.

Recognizing and treating these conditions plays a vital role in improving patients' cognitive functioning as well as the quality of life of people with dementia and their caregivers.

Thank you for your consideration,

Charles Anflick, LMSWVillageCare Neighborhood NORC & Gatekeeper Program CoordinatorNew York, NY

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  Mental health needs of people with Dementia and their caregivers

Please consider the best treatment practices for people and caregivers who are struggling daily with this illness. It's becoming one of the greatest mental health challenge we must face in the future. A comprehensive approach must be considered in the treatment practices as the myriad of this illness will eventually affect us all in some way or another. The co- occurring mental conditions that are experienced by both the patients and caregivers need to be taken seriously as it greatly affect their quality of life. It is our duty as professionals to ensure that the best is offered at all times to others who rely on our expertise/training. Thank you.

Phillip WhittinghamPsychologist IIKingsboro Psychiatric CenterBrooklyn, NY

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  mental health needs of individuals with Alzheimers and other dementias

I am very heartened to learn that the federal government released a draft of a comprehensive plan to address Alzheimer's disease. I do want to voice my fervent hope that adequate attention is paid to the mental disorders commonly experienced by people with dementia and their caregivers in the government's plan.

I worked as a psychiatric social worker for 17 years on a locked inpatient hospital geriatric unit, where the predominant diagnoses were Alzheimers or Dementia with agitation, depression, delusions and/or hallucinations. I witnessed the range and severity of symptoms that caused elderly people with dementia to neglect themselves, to become violent, refuse help offered to them even by their own loving children, to become paranoid toward loving family members, and the devastating effects this had on families. Without access to mental health treatment provided by knowledgeable geriatric psychiatrists and other practitioners, these individuals suffering from dementia would remain in agony and distress, harmful to themselves and others.

I applaud our government for addressing Alzheimers disease and urge you to carefully consider the mental health needs of this population in planning for the future.

Sincerely,

Carol Ban, LCSWDirector of NORC Programs and Isabella Senior Resource CenterIsabella Geriatric CenterNew York, NY

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  ADDRESS MENTAL HEALTH ISSUES OF PEOPLE WITH DEMENTIA, AS WELL AS THEIR CAREGIVERS

Lydia Schwartz

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  a mental health component

As you draw up plans to address the needs of the growing population of people with Alzheimers Disease and dimentia I ask that you would consider the mental health needs of both the caregivers and the patients.

My mother-in-law has been declining as a result of alzheimers, and as one of a many family member team that takes shifts caring for her I know how rough it is to maintain a positive attitude and stamina as her condition declines from one plateau to another.

If you are developing a comprehensive plan, I would think it would be critical to recognize the challenges of mental health and well-being as part of that overall picture, and include steps in your plan to support a mentally healthy population.

Please do not under estimate this critical aspect. The mental attitude of both the patient and the caregiver(s) can make an enormous difference in whether the patient is happy and the caregiver is attentive and loving.

Thank you for taking the time to read this and consider this aspect. People can be old and *well*.

Kathleen H. Cook

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  mental health care for people with dementia and their families

The federal government has released a draft ambitious plan to address Alzheimer's disease.

Unfortunately, the draft plan does not provide adequate attention to mental disorders commonly experienced by people with dementia and their caregivers.

Dementia frequently co-occurs with mental health conditions such as depression and anxiety disorders. In addition, family caregivers are at high risk for mental and physical health problems. Recognizing and treating these conditions plays a vital role in improving patients' cognitive functioning as well as the quality of life of people with dementia and their caregivers.

Please address the mental health needs of people with dementia and their caregivers in the final plan.

Linda K.P. Mertz, MSW, LCSWRProject CoordinatorInternships in Aging ProjectSchool of Social WelfareUAlbanyAlbany, NY

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  National Alzheimer's Plan response

I was pleased to be able to respond the the NAPA draft plan as part of the group gathered by

SAMHSA in December of 2011. I support all of the comments gathered by the group and sent to you my Michael Freeman.

I also ask you to consider the additional comments that I've included in my letter, based on my 25 years experience in developing, implementing, researching and administering programs for persons with dementia.

Thank You,

Beth Meyer-ArnoldDirector, Adult Day ServicesLuther ManorWauwatosa, WIhttp://www.LutherManor.org

ATTACHMENT:   letter of comment for NAPA to Helen Lamont.doc

Available as separate links:
Comments on the Draft National Alzheimer's PlanComments on the Draft National Alzheimer’s Plan

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 22, 2012

SUBJECT:  Alzheimer's Plan

I would like to submit a few comments regarding the Draft National Plan to Address Alzheimer's Disease. First, NAPA is a wonderful thing and long overdue. Second, thanks to the drafters who clearly state on page 3 that "Alzheimer's disease" as used also includes related dementias. My husband has Dementia with Lewy Bodies (DLB), and when someone refers to Alzheimer's, I am always the little voice that chimes in with, "...and don't forget the related dementias."

I hope that when the "experts" meet to discuss and forge the plans, they will include ideas from caregivers in the process. I've learned a tremendous amount from my experience with my husband's illness over the last several years, and believe I could provide valuable input about what it's like in the trenches.

A few items that I would like to specifically comment on:

page 4, a note that AD patients are hospitalized 2-3 times more than others: Often they are sent to the hospital and shouldn't be. The ER is a terrifying experience for them, and sometimes they are just exhibiting symptoms of their illness and don't even need the repeated MRIs, CT scans, and other tests that come back negative every time.

Throughout the document, references are made to provider education and outreach in various settings. This is my personal goal, as I have found that hospital and other staff, unless specifically trained in dementia diseases, are pretty much clueless as to caring for AD patients. One nurse in an excellent hospital in Las Vegas even told me, after caring for my husband as an inpatient, that he was "very confused." Really?

page 21, Goal 3: What does this mean? I hope the needs of caregivers will be addressed by talking to actual caregivers, and not just health care professionals who don't live this disease on a daily basis. (Also, what are "informatics?")

page 23-24, money issues: Why don't we have long-term care? For the middle class (us), it was not affordable at the time, and now it's impossible. More needs to be done to bring costs down for AD patients - they usually don't need skilled nursing care, just compassionate assistance. Also mentioned on page 25, housing options - I would be interested in participating in this discussion.

page 24, Strategy 3D: I agree that this is very important. However, I have found that sometimes the pendulum swings too far the other way, and I as a long-term spouse am viewed with suspicion. This is another goal of mine - to get government agencies and institutions at all levels to understand the difference between a person caring for their long-term spouse and someone who would exploit or abuse the AD patient.

page 26, Goal 4: Yes, we need to educate the public! But sometimes educational programs and materials are written or presented in a manner that the general public cannot understand. Short and simple is best!

page 28, Goal 5: Data is important - is there a way to also include anecdotal evidence?

Thank you for receiving comments. I guess I could summarize my thoughts by asking that the compilation of the Plan include input from real people who are experiencing the terrors of this disease each day.

Warmest regards,

Gloria BurkhartMesquite, NV

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 21, 2012

SUBJECT:  FW: Finished Piece

Just wanted to pass along the finished article and video that was produced: http://www.foxnews.com/health/2012/03/21/alzheimers-at-39/

Please make sure to add it to twitter, face book and your web pages.

Thanks

Michael Ellenbogen

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 20, 2012

SUBJECT:  National Alzheimer's Plan

Thank you for your time in considering this document.

Regards,

Melissa RamirezDeputy DirectorMental Health Association in New York StateAlbany, NY

ATTACHMENT:   POL_20120320_Ltr2DrLamont.pdf

Available as separate links:
Mental Health Association in New York State Response to the Draft National Alzheimer's PlanMental Health Association Comments on Draft National Plan

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 20, 2012

SUBJECT:  Re: Commend and thank Bruce Lamb

I would like to thank Mr. Ellenbogen for his supportive remarks regarding my comments on the National Plan to fight Alzheimer's disease. I hope that HHS and the Secretary will consider these comments as they revise the Plan. We are truly at a unique stage in our fight against Alzheimer's that will have implications for years to come. Developing an Office that is singly focused on coordinating and organizing efforts to fight Alzheimer's disease as well as to provide feedback to HHS and the Advisory Council as well as Congress is essential as we move forward. While there is certainly the possibility that this may step on toes within HHS and/or the NIH, it is something we literally cannot afford to do if we are serious in our efforts to fight Alzheimer's disease. Indeed, developing this infrastructure at the beginning of the Plan rather than years later will likely save money and lives into the future.

Thanks for your consideration.

Sincerely,

Bruce Lamb

==========

On Mar 17, 2012, at 11:24 AM, "Michael Ellenbogen" wrote:

I would like to commend and thank Bruce Lamb, who is an Alzheimer's researcher and Staff Scientist at Department of Neuroscience, in the Lerner Research Institute at the Cleveland Clinic. He shared his view points on January 13, 2012 , under the SUBJECT: Draft Framework for the National Plan to Address Alzheimer's Disease, in the public forum.

I found his view point's very interesting and highly recommend reading if you have not already done so. He also had an attachment that was titled, Right sizing funding for Alzheimer's disease, which was written by Todd E Golde, Bruce T Lamb, and Douglas Galasko and published May 6, 2011.

Right sizing funding for Alzheimer’s disease

I really like these paragraphs, which I extracted for your reading.

If one assumes that funding for HIV/AIDS was right sized to enable translation of basic discoveries to successful therapies, then given the lack of effective AD therapies, one possible implication is that funding for AD has been insufficient. A quick comparison of funding levels for HIV/AIDs relative to AD in the United States suggests this may be at least one factor that has hindered the translation of AD discovery to effective therapies. Based on publicly available data, National Institute of Health funding for HIV/AIDS in the United States is currently approximately $3 billion [5]. With approximately 1 million HIV-positive subjects in the United States, this equates to $3,000 of NIH funding per person with HIV/AIDs. In contrast, current NIH funding for AD is at a level of approximately $450 million [5], with perhaps another approximately $100 million to $200 million in NIH funding that might have some relevance to the study of AD (cognitive decline in aging, related neuro degenerative conditions). With a current prevalence of approximately 5 million individuals affected with AD in the United States, this equates to a maximum of $130 of NIH funding per person affected with the disease. So, on a per affected individual basis, NIH funding for HIV/AIDs is 23 times the level of that for AD.

Of course, there are many different ways to evaluate proportional or relative funding. Another one that is quite germane is economic impact. For AD in the United States this is estimated at more than $170 billion per year (and worldwide at $600 billion per year) [6]. Again focusing only on the United States, the yearly funding for research by the NIH represents 0.4% of the yearly costs of the disease in the United States. In other words, for every $2 the disease costs the United States, we spend less than 1 cent on research.

There are many people who believe in reinventing the wheel when undertaking a new project or endeavor. I have always been a firm believer that the people before us have laid the framework need to get started so we are not wasting a lot of time on the basics. The only approach I always followed along with that is, to delete, enhance and critique to make the plan even better. I always did that by asking the previous plan makers what they realized they did wrong and what would they do different. Ninety percent of that frame work would usually come from the best of many minds. I really believe the input and suggestion made by Bruce Lamb, be discussed when building this framework.

One thing that keeps coming to mind is the disparity issue related to AD. Am I the only one that sees this, or do we all just not want to talk about it. For example AD was first identified and named in 1906, while AIDS was identified in 1981. I see us now in the same stages as HIV was in 1988, when a focused effort was begun towards treatment or cure, with the creation of The Office of AIDS Research. It took an additional 5 years to strengthen this OAR (The NIH Revitalization Act), which really made a huge difference. Within three years of that day and by 1996 we started to finally have an impact on AIDS.

Let's not make a similar mistake as we did with HIV. Let's create a diseased focused agency for AD, with all the necessary strength, as of day one. Just think you can make up for the disparity that has been created and just maybe we could have a cure in less than 5 years.

Let me leave you with one last thought that I have not heard or seen anywhere. I think the government should offer a large sum of money to anyone who can come up with the cure for this disease first. While I am not sure what that amount should be it can be in cash and partial tax credits. I think that will drive many more into this arena and more efforts if the pie is big enough. Just think of all the savings insurance companies can benefit, not to mention the government. They may all be willing to help in that funding. Just a though. Sometimes you have to be creative and think outside the box.

Thanks

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money"http://www.michaelellenbogen.comhttp://www.michaelellenbogenmovement.com/

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 19, 2012

SUBJECT:  Comments on NAPA agenda

I have reviewed the scientific agenda for the National Initiative on Alzheimer's Disease.

Perhaps there is another document of which I am unaware.

However if this is the gist of the national plan then I would submit with urgency that there are enormous gaps in the plan.

As a Geriatric Neurologist who specializes in diagnosing and managing patients with dementia and caring for their families I see no where in the plan for a mechanism to increase clinical providers.

There is a national urgency to recruit and keep clinicians who care for people with dementia.

Currently, I am one of very few providers in my town of nearly 1million people who will see patients with dementia. I have been told that I spend too much time with them, so I would have to pay the clinic to see these patients.

I WOULD HAVE TO PAY!

I have since spoken with many other providers who have told me that they cannot afford to see these patients.

The Neurology residents at our medical school no longer rotate through our dementia clinics, since they have no intention of taking these patients.

I am constantly asked by the public where to turn for dementia providers. I am at a loss. I have asked Alzheimer's Association representatives for recommendations and they just shake their heads and say they cannot find providers either.

If we are to take important research findings and bring them to the public, we desperately need the providers to be there to deliver this care.

This will require a major shift away from current payment plans that value procedures over time spent with patients.

Please do not neglect this critical area in your plan.

If I can be of further assistance in this, don't hesitate to let me know.

Thanks

Germaine Odenheimer, MDGeriatric NeurologistGeriatric Medicine Clerkship DirectorDonald W Reynolds Department of Geriatric MedicineAssociate ProfessorUniversity of Oklahoma College of Medicine

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 19, 2012

SUBJECT:  ALZHEIMERS comments

I am the primary caregiver for my mom and this disease has shattered our family,

I had a bad experience with a Nursing Home and took my mom home (which was about about 8 months ago); took time off from work...and since she has almost returned to pre-nursing home "state".

But our family needs more help...it's been a stain physically and mentally..and financially; but I am doing all I can as my mom did for my brother and I growing up..

But this disease is like murder, and we need a cure.

Hope all avenues are being taken..

Thank You,

Rich BerteMarlborough MA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 19, 2012

SUBJECT:  National Alzheimer's Plan Comments

I am a co-author and now facilitator for our state plan, Conquering the Specter of Alzheimer's Disease in South Carolina, which was presented to the State Legislature on March 1, 2009. Needless to say, I have a keen interest in a national strategy to fight this disease. One of the recommendations that came out of South Carolina's task force was the involvement of the work force in supporting and assisting caregivers. Following is one of the recommendations in our plan regarding employers enabling caregivers to remain in the work force. This seems to coincide with the priorities of the national plan and represents an area not specifically addressed through the draft plan.

Recommendation 20. Promote and support private and public sector businesses in addressing the needs of employees who are caregivers to persons with ADRD through the use of on-site respite, support groups, or other initiatives.

Rationale: Seventy percent of people with ADRD are living at home, most of whom receive unpaid help from family members[i]. One study of family and other unpaid caregivers of people with ADRD found that 57% were employed full time or part time. Of those who were employed, two-thirds said they had to go in late, leave early or take time off because of caregiving; 18% had to take a leave of absence; 13% had reduced their hours; and 8% had turned down promotions[ii]. Eight percent of caregivers in the study had quit work entirely because of caregiving. Another study of family and other unpaid caregivers of more than 2,000 older people found that caregivers of people who had Alzheimer's or other dementias without behavioral symptoms were 31% more likely than caregivers of other older people to have reduced their hours or quit work[iii]. Caregivers of people who had Alzheimer's or other dementias with behavioral symptoms were 68% more likely than caregivers of other older people to have reduced their hours or quit work[iv].

Responsible Party: SC Alzheimer's Association, SC Chamber of Commerce, SC Better Business Bureaus, SC Technical College System, SC Manufacturers Association

References

  1. 2008 Alzheimer's Disease Facts and Figures, Alzheimer's Association, p. 24.
  2. Families Care: Alzheimer's Caregiving in the United States. Alzheimer's Association and National Alliance for Caregiving, 2004, Accessible at http://www.alz.org ).
  3. Covinsky, KI; Eng, C; Liu, L-Y; Sands, LP; Sehgal, AR; Walter, LC; et al. Reduced Employment in Caregivers of Frail Elders: Impact of Ethnicity, Patient Clinical Characteristics, and Caregiver Characteristics. Journal of Gerontology: Medical Sciences 2001; 56A (11): M707-713.
  4. 2008 Alzheimer's Disease Facts and Figures, Alzheimer's Association, p. 18.

Thank you for your time and consideration.

Sincerely,

Anne WolfAssistant Deputy Director of Aging ServicesLt. Governor's Office on Aging

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 18, 2012

SUBJECT:  comments on national Alzheimer's plan

I am an Occupational Therapist and specialize in Dementia Care. I have reviewed th National Alzheimer's plan and find the outline to be refreshingly comprehensive. As you and HHS move forward on the plan, please consider the important role of occuaptional therapy and the importance of providing services within a Psychosocial model and NOT a medical model.

I suggest the following beneftis for American seniors, as paid for without raising the debt.

  1. Allow for medicare to reimburse for Outpatient education and training services provided to the caregiver of someone with dementia. This training must be to meet a skilled need and can be provided within context of a small group session (2-3 caregivers). For example, as an OT, I could provide training to 3 caregivers in the bathing of patients in the moderate stages of dementia. This would be an efficient use of resources and time. Medicare must accept the fact that dementia care involves treating the dyad (patient+caregiver), not just the patient.
  2. Allow for coordination of services between organizations without barriers of HIPPA (I would need to call a social worker or case manager at a hospital and freely discuss a patient's case).
  3. Identify Occupational Therapy as a critically needed and stand alone provider of services to dementia patients and their caregivers.

Thank you for your attention.

Thomas R. Holmes, OTR, MA, QDCSTyler, TX

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 17, 2012

SUBJECT:  Commend and thank Bruce Lamb

I would like to commend and thank Bruce Lamb, who is an Alzheimer's researcher and Staff Scientist at Department of Neuroscience, in the Lerner Research Institute at the Cleveland Clinic. He shared his view points on January 13, 2012, under the SUBJECT: Draft Framework for the National Plan to Address Alzheimer's Disease, in the public forum.

I found his view point's very interesting and highly recommend reading if you have not already done so. He also had an attachment that was titled, Right sizing funding for Alzheimer's disease, which was written by Todd E Golde, Bruce T Lamb, and Douglas Galasko and published May 6, 2011.

Right sizing funding for Alzheimer’s disease

I really like these paragraphs, which I extracted for your reading.

If one assumes that funding for HIV/AIDS was right sized to enable translation of basic discoveries to successful therapies, then given the lack of effective AD therapies, one possible implication is that funding for AD has been insufficient. A quick comparison of funding levels for HIV/AIDs relative to AD in the United States suggests this may be at least one factor that has hindered the translation of AD discovery to effective therapies. Based on publicly available data, National Institute of Health funding for HIV/AIDS in the United States is currently approximately $3 billion [5]. With approximately 1 million HIV-positive subjects in the United States, this equates to $3,000 of NIH funding per person with HIV/AIDs. In contrast, current NIH funding for AD is at a level of approximately $450 million [5], with perhaps another approximately $100 million to $200 million in NIH funding that might have some relevance to the study of AD (cognitive decline in aging, related neuro degenerative conditions). With a current prevalence of approximately 5 million individuals affected with AD in the United States, this equates to a maximum of $130 of NIH funding per person affected with the disease. So, on a per affected individual basis, NIH funding for HIV/AIDs is 23 times the level of that for AD.

Of course, there are many different ways to evaluate proportional or relative funding. Another one that is quite germane is economic impact. For AD in the United States this is estimated at more than $170 billion per year (and worldwide at $600 billion per year) [6]. Again focusing only on the United States, the yearly funding for research by the NIH represents 0.4% of the yearly costs of the disease in the United States. In other words, for every $2 the disease costs the United States, we spend less than 1 cent on research.

There are many people who believe in reinventing the wheel when undertaking a new project or endeavor. I have always been a firm believer that the people before us have laid the framework need to get started so we are not wasting a lot of time on the basics. The only approach I always followed along with that is, to delete, enhance and critique to make the plan even better. I always did that by asking the previous plan makers what they realized they did wrong and what would they do different. Ninety percent of that frame work would usually come from the best of many minds. I really believe the input and suggestion made by Bruce Lamb, be discussed when building this framework.

One thing that keeps coming to mind is the disparity issue related to AD. Am I the only one that sees this, or do we all just not want to talk about it. For example AD was first identified and named in 1906, while AIDS was identified in 1981. I see us now in the same stages as HIV was in 1988, when a focused effort was begun towards treatment or cure, with the creation of The Office of AIDS Research. It took an additional 5 years to strengthen this OAR (The NIH Revitalization Act), which really made a huge difference. Within three years of that day and by 1996 we started to finally have an impact on AIDS.

Let's not make a similar mistake as we did with HIV. Let's create a diseased focused agency for AD, with all the necessary strength, as of day one. Just think you can make up for the disparity that has been created and just maybe we could have a cure in less than 5 years.

Let me leave you with one last thought that I have not heard or seen anywhere. I think the government should offer a large sum of money to anyone who can come up with the cure for this disease first. While I am not sure what that amount should be it can be in cash and partial tax credits. I think that will drive many more into this arena and more efforts if the pie is big enough. Just think of all the savings insurance companies can benefit, not to mention the government. They may all be willing to help in that funding. Just a though. Sometimes you have to be creative and think outside the box.

Thanks

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money"http://www.michaelellenbogen.comhttp://www.michaelellenbogenmovement.com/

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 16, 2012

SUBJECT:  Comments on Psychologists and Neuropsychologists - We need to better educate our doctors.

My name is Michael Ellenbogen and I was diagnosed with Alzheimer's at age 49, after struggling to get a diagnoses from age 39. We need to better educate our doctors.

I had the opportunity to read many of the public comments. Many referred Psychologists and Neuropsychologists that may not have been in the plan. While I think they can add a benefit to people with AD, they can also hinder diagnose, as was done to me. In my experience it delayed my diagnoses for about 10 years, not to mention the financial burden it created to our health system. Many need to be better educated on how people with AD react to the test they provide. They also need to put some merit in what their patients and caregivers may share with them. Especially if the caregiver is a RN.

In June 1999, I had my first full Neuropsychological Evaluation conducted by Dr. Lindsey Robinson. The summary and recommendations were: Current level of overall intellectual functioning is in the average range, with verbal and nonverbal cognitive skills relatively evenly developed. Neuropsychological testing revealed moderate to severe impairments in information processing speed and sustained attention, with mild to moderate impairments in verbal learning efficiency. Short-term attention, expressive/receptive language skills, verbal and nonverbal abstract reasoning, and cognitive flexibility were within normal limits for age. There was no evidence of clinically significant depression, anxiety, or other psychological disorder which might account for the patient's cognitive deficits. The etiology of Mr. Ellenbogen's cognitive impairment is unclear as, from a neuropsychological perspective, his symptoms are nonspecific. However, the magnitude of impairment observed on objective testing, in the absence of identifiable affective disorder, does suggest the presence of some form of organic cerebral dysfunction. Further neurological evaluation recommended.

I another appointment with Dr. Lindsey Robinson on February 2001. It was frustrating dealing with these doctors because every time I had to see a new doctor or take a test, my primary doctor needed to okay it. The other frustration was that sometimes I had to wait 5 months for appointments, which was the case with this appointment. The test that I was about to retake was questionable. I was not sure my insurance would cover the procedure, so I had to jump through hoops with the doctor and my insurance company. If the test was not covered, it would cost me about $2,500.00. When you deal with these insurance companies, document the conversation for yourself and ask them to do the same. I cannot tell you how many times they tried to get out of paying, but then they checked their records and saw I had received pre-approval. They kept putting up roadblocks and I had to be in touch with them a lot, when I should have been working. It was bad enough that I had to leave work for appointments, I did not need the added aggravation from the insurance company.

I finally met with Dr. Lindsey Robinson. She had commented on my other doctors findings in the beginning of her report: The etiology of his cognitive symptoms was felt to be multifactorial, including normal aging, alcohol consumption, and anxiety.

I have to tell you that when I saw those comments, I was very angry. She was making up her mind before even administering the test.

Her summary and recommendations were: Current level of overall intellectual functioning is in the average range, with no significant discrepancy between verbal cognitive skills and nonverbal reasoning abilities, There is no significant change in overall intellectual ability in comparison with the evaluation in June of 1999. On neuropsychological testing, Mr. Ellenbogen displays generalized psychomotor slowing and inconsistent impairments in attention, concentration, and memory. In comparison with the previous evaluation, a variable, inconsistent pattern of change was demonstrated, with improvements on some measures and declines on others. This pattern of performance is not suggestive of focal or lateralized organic cerebral dysfunction, and is not consistent with the presence of a progressive cognitive disorder. Rather, Mr. Ellenbogen's neuropsychological test performance suggestive of fluctuating levels of attention, concentration, and performance speed. Objective psychological screening suggest the presence of mild to moderate symptoms of depression and anxiety, and an introspective, perfectionistic personality style. These psychological symptoms are most likely playing a significant role in Mr. Ellenbogen's subjective cognitive dysfunction.

She encouraged me to seek a psychiatric consultation to determine whether a trial of antidepressant or anti-anxiety medication might be helpful in ameliorating my cognitive symptoms. She got me so aggravated, and she would not listen to anything my wife or I tried to tell her. She just did not want to hear it.

I went back to Dr. Lindsey J. Robinson, the Clinical Neuropsychologist, in January 2006. She was going to redo the neuropsychological testing. I thought it would be best to use this doctor again because she had a baseline for me and could compare my new results with the old. It would take months for the results. The other issue was that there were not many doctors, who performed this test, that were covered under my health insurance policy.

In June 2006, just a few weeks after my 48th birthday, Dr. Lindsey J. Robinson finally got back with the results of my testing. Her results for neuropsychological testing were as follows: Background -- Previous neuropsychological evaluation in 1999 and 2001 revealed fluctuating, inconsistent impairments in attention, concentration, and performance speed, and symptoms consistent with anxiety and depression. Summary and recommendations -- Multiple aspects of Mr. Ellenbogen's behavior and test performance suggestive of inconsistent/incomplete effort during the evaluation. Thus, this test results described are not regarded as a valid representation of his optimal cognitive functioning. Mr. Ellenbogen's clinical presentation and test are unchanged in comparison with prior neuropsychological evaluation in 1999 and 2001. There is no evidence of progression of cognitive impairments, and Mr. Ellenbogen's developmental history and current test performance are not consistent with a diagnosis of attention deficit/hyperactivity disorder or any other organically-based cognitive disorder. Mr. Ellenbogen demonstrated an anxious/ obsessive personality style and some symptoms of depression. His cognitive can be most parsimoniously attributed to affective disorder and/or other motivational or psychological factors.

Diagnostic Impression;

R/O Dementia (not in evidence)R/O Anxiety Disorder, NOS R/O Personality Disorder, NOS

Her recommendations -- Mr. Ellenbogen should be reassured that thorough medical/neurological evaluation on multiple occasions has revealed no evidence of neurological cause for his cognitive symptoms. A trial of psychotropic medication could be considered to address Mr. Ellenbogen's apparent effective symptoms. He is unlikely to benefit from psychotherapy due to his reluctance to accept a non-medical explanation for his symptoms.

I have to tell you that when I met with her and read this report, I was so upset that I had made the decision to go back to her. First of all, during my testing we were not in a quiet area. Anytime I hear noise, it just throws me off. I have difficulty processing and concentrating when that occurs. There was nothing she could do to make it better. I tried very hard to be accurate during my testing and worked as quickly as I could. I tried to inform her that she was wrong in her findings, but she did not want to hear it.

She was so confident in her failure to diagnose me properly, that when I had reach out to her to make her aware that other Psychologists and Neuropsychologists determined that I did have Alzheimer's. She insisted on writing a letter to tell my primary doctor, that the others were wrong and she felt that her diagnosis was correct. Since that day I tried to reach out to her and gave her the opportunity to see the conclusions that 3 other doctors cane up with, but her office refused. Doctors like this will only hurt people like me. There should be a specific testing they must go through before they can test YOAD patients.

Maybe someone from your office can educate her. [address removed]

As you can see, it requires special doctors with the right training to deal with YOAD. I hope you will insure that happens.

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money"http://www.michaelellenbogen.comhttp://www.michaelellenbogenmovement.com/

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 16, 2012

SUBJECT:  Check out my two, new YouTube videos - Thanks

Please check out my new videos. Please make it count and spread the word. Add it to your face book, websites and twitter. Sorry if you are receiving it a second time.

http://youtu.be/viQre91DAL8

http://youtu.be/J7uL6FIyPOs

Thanks

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money"http://www.michaelellenbogen.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 16, 2012

SUBJECT:  national plan

I am pleased more money and attention is proposed for the NAPA and that you are asking for comments.

I am a caregiver for my husband, Al Hayes (80 Yrs. old), who has had Dementia for five or more years. He has been diagnosed going int the advance stage; little language skills, completely dependent on me for his personal care and sleeps 15 hours a day. The only outside help (other than family) I get is two afternoons a week when the Santa Fe Senior Services provide Respite Care for three hours, which gives me a chance for free time. I felt very lonely until I took advantage of various Alzheimer's groups, caregivers, Alzheimer Cafe and discussion groups each meeting is only one day a month. There are no day care programs or affordable home care. I am 85 years old and have full 24+7 caretakers responsibility, I can not leave Al alone to go shopping. I have had to give up all my interest my involvement with my church and various activities.

I feel more attention should be directed towards caregivers and their needs and their family. My desire is to keep Al Home as long as possible but I need more help at home. I am 85 years old and I am concerned about how much longer I can keep up with all the demands of being a caregiver.

The caregiver is like the elephant in the room everyone knows it is there but they keep their blinders on. Caregivers need to be recognized and helped in every way possible.

Sincerely,

Yvonne HayesSanta Fe, NM

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 15, 2012

SUBJECT:  Comments on Draft National Plan to Address Alzheimer's Disease

I believe we met a year or so ago at the CDC's fall prevention expert panel. I hope you are doing well!

I had the opportunity to read the Draft National Plan to Address Alzheimer's Disease and had some thoughts to pass along to you:

  1. It seems like HHS is assigned responsibility frequently throughout. Where translational efforts are mentioned (e.g., p. 12, Action 1.E.2.), I'd suggest specifically calling out partnering with groups like the CDC's Prevention Research Centers Healthy Aging Network (CDC-HAN, http://www.prc-han.org/) and also the Geriatric Education Centers.
  2. There is mention (p. 14, Action 2.A.1.) of training health care providers in how to manage Alzheimer's "in the context of other health conditions." I would assert that there is not sufficient evidence on this topic to date to direct such training, and that some of the funds earmarked for research should go to agencies like AHRQ or the CDC to support external investigators to conduct studies in this area.
  3. Also mentioned in this same section are tools that are being developed to detect cognitive impairment, and (p. 16, Action 2.B.2.) HHS identifying tools for use in outpatient settings to assess cognition. Such tools are in fact already in existence, and in use in clinical practice, and should be cited here. See for example the Mini-Cog (PDF attached).
  4. There is mention (p. 14, Action 2.A.3.) of HHS developing a clearinghouse. CDC-HAN has experience developing and maintaining a clearinghouse (see http://depts.washington.edu/hansite/drupal/); this clearinghouse has won an APEX Award for Excellence in Publication. HHS could consider contracting with CDC-HAN for this activity.
  5. There is mention of the need for measures of quality of care (p. 17, Strategy 2.D.). There is no reference here to the ACOVE work on this topic, and that work should be cited. See Feil DG, MacLean C, Sultzer D. Quality indicators for the care of dementia in vulnerable elders. J Am Geriatr Soc. 2007 Oct;55 Suppl 2:S293-301.
  6. On p. 18, I suggest adding references for the demonstrations mentioned under Action 2.E.1. and 2.E.2. if available, or at least more detail on where these demonstrations are being done, who is funding them, and who the PIs are.
  7. There is emphasis (p. 19, Action 2.F.1.) on hospital safety for persons with AD. However, there is no emphasis on preventing hospitalization in the first place. This is a very realistic and important goal for persons with dementia at all stages of the disease, and I suggest it be added. See a recent publication that I authored examining potentially preventable hospitalizations in persons with dementia compared to a cohort who remained free of dementia: Phelan EA, Borson S, Grothaus L, Balch S, Larson EB. Association of incident dementia with hospitalizations. JAMA. 2012 Jan 11;307(2):165-72.

Thanks for conveying my input into the appropriate channels. As an academic geriatrician with an active clinical geriatrics practice, I applaud this undertaking and will look forward to seeing the final version of the plan!

And please let me know if any questions.

Best wishes,

Elizabeth A. Phelan, MD, MSAssociate Professor of Medicine/Gerontology and Geriatric MedicineAdjunct Associate Professor of Health Services, School of Public HealthAffiliate Investigator, Group Health Research InstituteCo-Director, Center for Interdisciplinary Geriatric Health Care ResearchAssistant Director and Director of Evaluation, Northwest Geriatric Education CenterFounding Director, Fall Prevention Clinic, Harborview Medical CenterUniversity of WashingtonSeattle, WA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 15, 2012

SUBJECT:  Draft National Plan to Address Alzheimer's Disease - time to comment

I serve on the North Carolina Healthy Aging Coalition and am excited about the proposed national plan addressing Alzheimer's Disease. I have a few comments that may already be inferred in sections of the draft, but did not specifically see the following addressed:

  • On page 14 ,Action 2.A.2 talks about encouraging providers to pursue careers in geriatric specialties and I would like Allied Health professionals added to this section since many of us provide direct care to individuals and their caregivers of those with Alzheimer's Disease.
  • On page 14, Action 2.A.4 talks about strengthening the direct-care workforce. I whole-heartedly agree that this is needed; but also think there needs to be a plan of action to increase the number of cost-effective sites that are designed specifically for those with Alzheimer's Disease. I know later in the Plan, there is discussion about different housing options, but feel that this could be strengthened in the Plan. From my experience, many families do not have the funds to have their loved one cared for in a "Memory Cottage." Along the same lines, perhaps some type of long term health care insurance for dementia could be provided, if it is not currently available.
  • On page 21, Goal 3 indicates $10.5 million dollars will be available in 2013 to support caregivers' needs, but does not indicate how this money will be dispersed and who can apply for the monies.
  • One area I did not seen mentioned in the Plan is research money for prevention strategies, such as fall prevention and home safety. Both of these preventative strategies are crucial in helping the person with Alzheimer's not only remain in their home longer, but also promote their functional performance and integrity.

Thanks for the opportunity to share my thoughts and I look forward to seeing the final Plan,

Jane Painter, EdD., OTR/L, FAOTAProfessor and Academic Fieldwork CoordinatorEast Carolina UniversityCollege of Allied Health Sciences Occupational Therapy DepartmentGreenville, NChttp://www.aota.org/Educate/EdRes/Fieldwork/Workshop.aspx

==========

The Draft National Plan to Address Alzheimer's Disease is available for comment until March 30. This is a very important plan with significant implications for older adults and their caregivers. I encourage you to review the draft and submit any comments to Helen Lamont (helen.lamont@hhs.gov). If there are elements you would like to discuss, given their relevance to North Carolina, please share them via the listserv.

Once the plan is finalized, we will want to consider what we can do to promote implementation in North Carolina. The CDC-Healthy Aging Research Network's Healthy Brain Workgroup will be very engaged, and there will be important roles for geriatric education centers, academic institutions, aging services, public health, mental health, healthcare and indeed, for all of us.

Best to you!

Rebecca H. Hunter, M.Ed.Senior Scientist, UNC Institute on AgingResearch Associate, Center for Health Promotion and Disease Prevention

ATTACHMENT:   Draft National Plan to Address Alzheimer's Disease.pdf

Available as separate links:
Draft National Plan To Address Alzheimer's DiseaseDraft National Plan To Address Alzheimer’s Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 15, 2012

SUBJECT:  National Alzheimer's Plan - Input -

As a Caregiver and Advocate for those affected by Alzheimer's Disease, I am Extremely pleased with the Draft National Plan To Address Alzheimer's Disease.

Given the fact that people are living longer, this Dreadful, Devastating disease is on the Fast track to becoming an Epidemic, which I am confident The National Plan will in deed keep in check and make much more manageable, so long as it is Fully Supported and Enforced.

Below, I wish to offer my input, which comes from Real Life Experience as a Caregiver and Advocate

I sincerely hope that you will find this input most helpful.

With Respect To Diagnosis:

One of the Keys to Success in Keeping Alzheimer's Disease In Check Is Early, Timely Diagnosis.

I have found in my work as a Caregiver and Advocate that Alzheimer's enters the lives of those affected in ways we may classify as minor or may overlook such as; having to write things down more often, patterns of not being able to locate items or patterns of memory lapses, all of which we may joke off as ' Pre- Senior or Senior Moments '.

It is up to All Of Us to Keep An Eye On Each Other and Those Around Us, Should we see these behaviors, we Must Take Them Seriously and Track Them As Such.

Cognitive Testing / Evaluations Must Become Part Of Routine Exams For Everyone ,As We Never Know Where or When This Dreadful Disease May Strike.

With Respect To Testing / Evaluation, It Must Be More than asking a person their name, what day it is, what year it is and who the President is. I Propose we include questioning about work, family, driving skills, life skills, household management, personal care. In addition to Monitoring Personality / Behavioral Status and Changes.

The Key here is Proper Evaluation, Monitoring, Detection of Changes and Knowing When To Red Flag.

Education / Training:

Education and Training are Critically Important and Mandatory in the Diagnosis, Treatment and Care of Those Affected By Alzheimer's Disease, and Must Be An Ongoing Process As The Disease Evolves Over Time.

Through my Exposure and Experience I have seen the Blood Boiling Impact that Those With Poor / Little To No Knowledge, Education and Training can have when it comes to Alzheimer's, from Arguing with Patients , Poor / In-Effective Communication Skills to Leaving Patients Un-Attended. All of which are 100 Percent Un-Acceptable and In-Excusable.

People who are working in Any Capacity With Those Affected By Alzheimer's Must Be The Best Of The Best, The Cream Of The Crop as There Is No Room To Settle For Second Best.

Ill Willed or Under Qualified People Pose A Grave Danger and Threat To Those With Alzheimer's and We Must Ensure, The Best Of The Best Are Ready, Willing and Able To Step Up and Provide The Necessary Care.

Caregivers and Support:

Formal, Thorough, Ongoing Education, Training and Support Are Essential at All levels of the Caregiving Process, and It Must Be Seamless.

There Must Also Be Flexibility Within Medical Coverage Of All Types To Allow For Flexibility and Out of Network / Program Services If These Out Of Network / Program Services Provide A Level of Care / Support Which Standards and Quality Exceed In Network / Program. Why Should Those With Alzheimer's and Their Caregivers Be Backed Into A Corner Which Forces Acceptance Of Sub-Standard Services?

Caregivers at All levels also Need Adequate and Timely Relief To Prevent ' Burnout ' and To Tend To Their Own Personal Health and Affairs.

Caregivers Must Be Educated and Informed Of All Available Support Services, which as a Caregiver , Myself Can Be Overwhelming , In and Of Itself, As Most Are Unsure Of How To Begin The Process Of Locating Services or Lack the Time and Energy To Do So.

Given This, I wish to offer my services, as an official community resource, with respect to assisting Caregivers research, locate, apply for and coordinate support services. I have Professionally and Successfully Linked Caregivers with a myriad of support services ranging from In Home Personal Care Services to Financial and Prescription Support Services.

Closing Thoughts:

In Closing, I Agree That Alzheimer's Is Quickly Approaching Epidemic Levels and If We Fail To Act Now, This Failure Will Prove To Be Devastating To Say The Least.

The National Plan, When Combined With Input, Such As Contained In This Document, Ensure That A Proactive Approach Will Lessen The Burden and Devastation Of Alzheimer's At All Levels.

We Must Also Unite and Advocate Tirelessly To Ensure Every Aspect Of This Plan Does Not Fall Prey To The " Politics ' Of Our Government ,As That Too Will Prove To Be Devastating.

Thank You For The Opportunity To Provide Input On The National Plan, It Has Been An Extreme Honor To Say The Least and I Look Forward To This Being Fully Enacted and Enforced.

Sincerely

Brian C HornakAdvocate / CaregiverKearny, NJ

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 15, 2012

SUBJECT:  Advisory Council on Alzheimer's - Expanded talking points for Michael Ellenbogen

This is a follow-up to my speech yesterday with an expanded version. I was concerned in keeping my 3 minute limit, which made me a bit nervous.

First of all, I would like to thank you, the federal and non federal committee members, and all others involved, for what have already been accomplished, but we still have a long way to go. Money is going to be the biggest issue, even though the president recently committed more.

I am a 53 year old, living with Alzheimer's. I was diagnosed at age 49 after struggling for 10 years to get a diagnosis from age 39.

I have a few issues to address. The first one is related to 2025 date which was originally thought of, I have heard many on this committee and others with the dissatisfaction of that date. I strongly recommend that we show urgency and use the 2020date that everyone seems to support. I know it will take some courage on many of you to rethink this date but do it for all of us who have been waiting so long already. Just look back at the momentum and target dates they were trying to shot for HIV and Cancer. They were much more aggressive.

Second issues is the disparity around this disease. While I would like to see more funding dedicated to Alzheimer's, that may not always be possible. Today 18.7 percent of the NIH research budget goes to cancer, 9.9% to HIV, and just 1.4% to Alzheimer's. We need to be more fairly with the designation of those dollar amounts. There are many more people living with Alzheimer's than HIV, yet it receives much less funding. More funding is desperately for Alzheimer. They are all important causes and should be treated fairly. Keep in mind 98 percent of breast cancer patients continue to have a normal life when it its diagnosed early. Yet Alzheimer's patients do not have any chance what so ever. In fact 40% of their last years are so horrific that you would not wish it on your worst enemy, but all of our families have to endure it and become ill in the process..

And last, a subject that no one wants to talk about, but can save millions. The right to die with the help of a doctors. Many of us who have this disease do not want to ride it out to the end. We want to be remembered in a more positive view. We also do not want our families to suffer or have the added financial burden. Please consider the right to die for devastating diseases like this. While I do not like to talk about this, it is important to know how so many of us feel. I have had the opportunity to speak with other like me and they feel the same way. My biggest concern is that I may take my life much earlier than I need to or I may even screw up in the process and great a bigger medical condition because I did it to late and failed. That would not have been an issue a few years ago, when I had guns in the house. I gave the up for the concern for my own family. I did not want to wake up one day and think that they were intruders and shoot them. I would love to opportunity to let someone know what my wishes are based on a number of question answered so they know at what point and time they should acct on my wishes. It can be as simples as a score on the mini mental exam done at two different times. Please don't make me and my family suffer more than I need to. Have some passion. And of course this is based on being able to make these decision when one was still capable to make those decisions with a sound mind, which I still have.

I would also like to volunteer my services to be on your committees to represents others like myself who has this debilitating disease.

I would also like to see an open public input conference line, for all future meetings. I think it's very important for people like me to voice their opinions. What I did not like about the meeting is where many companies are trying to self advertise their special interest for their companies. There is a time for that and it should not take away from the people who are living with the pain. One example was the person representing GE and the petscan. We all know this is great product and all know it's needed, but they should have more brains then that.

Thanks again for hearing my shorten version yesterday and reading my extended version now.

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money"http://www.michaelellenbogen.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 14, 2012

SUBJECT:  Public Comments

Please submit my attached testimony to the public comment section of the NAPA website.

Thank you,

Mary Hogan

ATTACHMENT:   ACT March 14.pdf

Available as separate links:
Public Testimony for NAPA Advisory Council Teleconference MeetingPublic Testimony NAPA Advisory Council Teleconference Meeting

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 14, 2012

SUBJECT:  A voice for AD patients

My name is Joan Uronis. I am 62 and have recently been diagnosed with AD. Long before my diagnosis, I have been a passionate advocate for those with the diagnosis of Alzheimer's. Since I am no longer able to work, my new full-time career is one of advocacy. I have held executive positions in the healthcare field for over 15 years. My last position was as General Manager of a Hospice where I met with caregivers of persons with AD as well as those with the disease. For some reason I found myself devoted to this population. I also worked as Executive Director of an Assisted Living where I had contact with this special group as well.

My mother had Alzheimer's and died in 2010 at age 92 of the disease. I was her part-time caregiver. I have worked the disease and now am living it. I am a support group facilitator for the Alzheimer's Association and volunteer at an Assisted Living in their Alzheimer's/Dementia care center.

Having worked and experienced the lack of care for those of us with the disease, I am a voice for the voiceless, a voice for those ashamed to speak out and a voice for the issues and concerns that face all of us. Our main concern is one of adequate quality care. Alzheimer's patients require a unique type of care. My observations of the care that is provided to patients in Assisted Livings, Nursing Homes, Hospitals and by some physicians leaves my heart hurting. It leaves me with little hope of what may be in store for me.

My recommendations to give hope to those of us with the disease and to ease the minds of their caregivers are the following:

  • Care given by state certified persons trained in working with those with AD. They need to be required to be recertified to continue to work with this population
  • Physicians trained in Alzheimer's as most have patients with the disease
  • All Medical students should to be trained in Alzheimer's and how to give the respect and dignity that we deserve. We are still human.
  • Nursing schools should also train nurses in the same regard. Being cold and hurried does not ease anxiety and frustration and leads to dehumanization
  • Hospitals need to be particularly aware of those with Alzheimer's and ensure their safety and check on them regularly
  • Emergency Room staff need to be aware of patients admitted with Alzheimer's. This was brought to light by my mother who was taken to the ER from her AL, she was in the late stage of the disease. When I arrived, she was at the edge of the bed with no one in attendance. Being confused I could only image what may have happened if I had not arrived.
  • A place where we can go that is specifically for us, not a part of another facility. This place would have staff that is certified in Alzheimer's care. The ratio of caregivers to patients would be small enough to ensure quality care. This would also ease the minds of caregivers.

These same concerns have been expressed to me by caregivers who have found the same to be true. We all need to be treated with dignity, respect, concern for our safety and given the unique quality of care that we deserve. Alzheimer's care is unique and requires a much better understanding. On behalf of myself and those with the most dreaded disease, I thank you for listening. Our future is in your hands. God bless.

Joan Uronis

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 14, 2012

SUBJECT:  National Alzheimer's Plan - Need C4A Member Input

can you please make sure these comments get added to the public input. thanks. Laura Trejo, MSG, MPA General Manager Los Angeles Department of Aging Los Angeles, CA

==========

Here are CSS' comments:

We have no additional comments; however we have identified a few points of interests:

Unless the disease can be effectively treated or prevented, the number of Americans with Alzheimer's disease will increase significantly in the next two decades. Therefore, HHS has included the following five foundational goals:

  1. Prevent and Effectively Treat Alzheimer's Disease by 2025
  2. Optimize Care Quality and Efficiency
  3. Expand Supports for People with Alzheimer's Disease and Their Families
  4. Enhance Public Awareness and Engagement
  5. Track Progress and Drive Improvement

Also, Goals 3 &4 have the most implications to our AAA programs as follows:

Goal 3: Expand Supports for People with Alzheimer's Disease and Their Families

Supporting people with Alzheimer's disease and their families and caregivers requires giving them the tools that they need, helping to plan for future needs, and ensuring that safety and dignity are maintained. To help respond to the challenges faced by families and other caregivers, the Obama Administration's Alzheimer's disease announcement makes a new investment of $10.5 million in fiscal year 2013 to support the needs of caregivers of people with Alzheimer's disease.

Goal 4: Enhance Public Awareness and Engagement

There are widespread and significant public misperceptions about diagnosis and treatment that lead to delayed diagnosis and to people with the disease and their caregivers feeling isolated and stigmatized. Enhancing public awareness and engagement is an essential goal of this project.

Please let us know if you need any additional information.

Lorenza C. SanchezAssistant DirectorLos Angeles County Community & Senior Services DepartmentAging & Adult Services BranchLos Angeles, CAWeb-Site: http://css.lacounty.gov

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 13, 2012

SUBJECT:  Alzheimer's Research

It is with great hope that I am writing this letter. My mother suffered from this disease for eight years. Not only did she suffer consequences to her health, but the whole family suffered with her. And, other family members in her family had Alzheimers in later years. Our generation is waiting for the disease to strike one of the adult children, with hope that we will not have to deal with this monster. Please, continue the research and give our family and other families hope to live long disease free lives.

Liz HarwoodPueblo, CO

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 13, 2012

SUBJECT:  Commonwealth of Virginia Alzheimer's Disease and Related Disorders Commission

Attached please find public comment from the Commonwealth of Virginia Alzheimer's Disease and Related Disorders Commission on the draft National Plan to Address Alzheimer's Disease.

Amy Marschean, J.D.Senior Policy AnalystVirginia Department for the Aging

ATTACHMENT:   DOC020810-004.pdf

Available as separate links:
Virginia Alzheimer's Disease and Related Disorders Commission Comments on Draft National PlanDraft National Plan to Address Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 13, 2012

SUBJECT:  Congresswoman McMorris Rodgers would like to submit a letter

I understand that the advisory committee for NAPA will be meeting tomorrow. My boss would like to have the attached letter submitted as part of the record. Is that possible?

Thanks,

Karen L. Summar, MD, MSJoseph P. Kennedy Foundation Public Policy FellowOffice of Congresswoman Cathy McMorris RodgersWashington, DC

ATTACHMENT:   2012FEB08_CMR_toFrancisCollins_$50Mill_Alz.pdf

Available as separate links:
Comments on Down Syndrome and Alzheimer's DiseaseComments on Down Syndrome and Alzheimer's

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 13, 2012

SUBJECT:  Comments on NAPA

Per a Twitter Chat on #NAPA (#talkalz) today, please consider the following questions for the upcoming revision of the Act:

  1. What incentives exist for direct care staff to increase education and raise standards of care proposed under NAPA? (As a reminder, their current pay rate is roughly that of a worker at McDonald's while their responsibilities for human health and welfare are exponentially greater.)
  2. Will there be a dedicated funding stream for mandates in the NAPA Act? Without appropriate funding, legislation will force UNFUNDED MANDATES upon the plates of service providers and effectively establish a DIS-incentive to provide Elder Care Services for people with acquired cognitive disabilities like Alzheimer's.
  3. What working models from 10 countries with existing Alzheimer's Planning are being reviewed for successful implementation? If possible, can you please provide a link to those resources?

Thank you very much for your consideration.

Respectfully,

Kimberley ThompsonDirector of Social Media & Community ManagementSUNRISE COMMUNITY, INC.Miami, FL

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 12, 2012

SUBJECT:  Introducing EmFinders

I am the president of EmFinders, the leading national recovery solution for cognitively-impaired individuals who wander off and end up missing. I wanted to reach out to you personally to discuss the benefits of EmFinders for seniors with Alzheimers', their caregivers, and assisted living communities. We at EmFinders are dedicated to helping recover residents who elope as quickly, safely, and affordably as possible.

Our new EmFinders Elopement Risk Program (EERP) features the EmFinders EmSeeQ bracelet worn by residents who have been assessed via the program to be 'at risk'. The unique and patented cellular technology of our device features the smallest personal locator available for nationwide coverage. If a resident leaves their home or community unsupervised for example, the device is activated and notifies the nearest local law enforcement agency via the Emergency 9-1-1 system, and the individual is quickly located by first responders. We have enabled 106 rescues to date, with 100% success rate, and with a median recovery time of 30 minutes..

The EERP and the EmSeeQ device provide the first comprehensive program for caregivers and communities to pro-actively identify and manage elopement risk both for memory care residents as well as the assisted living population at large. By design, this new program should significantly reduce assisted living communities' exposure, while also bringing peace of mind to staff and family members in the event an actual elopement were to occur.

I would be pleased to discuss our solution and your requirements. We have been working with a number of larger Assisted Living providers and we have developed considerable expertise in rolling out and managing our solutions for national caregivers and communities.

I will be attending the upcoming Aging in America event in Washington, D.C. from 26 Mar - 1 April -- we have a booth there and I would be delighted to meet your representatives locally at this event or of course in your office.

Please let me know what would be a good day and time to meet the week of the 26th and I'll be happy to schedule.

I look forward to talking with HHS soon.

Best regards,

Patrice McAreeEmFinders, President

ATTACHMENT:   EERPImplementationFinal Rev 5 PM-01712x.pdf

Available as separate links:
EmFinders Elopement Risk Program for Senior Care Communities: Bringing Peace of Mind to Families, Caregivers and Senior CommunitiesEmFinders Elopement Risk Program for Senior Care Communities

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 12, 2012

SUBJECT:  Comments on the draft National Plan for Alzheimer's and Related Disorders

Please accept the following comments on the draft National Plan for Alzheimer's and Related Disorders from the State Unit on Aging in Connecticut:

  1. While evidence based research can be a reliable tool, more flexibility should be granted to community providers and researchers to explore innovative and creative non-pharmacological approaches to living with and treating Alzheimer's disease. Our CONNECTIONS grant from AoA and our work in CT with NECC and cognitive training has afforded us with many examples of the positive impacts of this intervention on the quality of life for the caregiver as well as the individual with dementia. Excluding such projects from funding opportunities, further exploration or dismissing them as models because they do not have the full complement of expansive research behind them is short-sighted and limiting to families. Often the most innovative approaches are the ones that afford families a sense of empowerment in combating the disease process.
  2. The strategy area of "maintaining the dignity, safety and rights of people with Alzheimer's Disease" is critical. The perception of this disease and the assumed burden that families incur upon diagnosis often negatively impacts the delivery of care received by those with the diagnosis. Training medical and legal personnel as well as other individuals in the field is an excellent way to begin addressing the stigma associated with the disease and some of the misperceptions and assumptions that are prevalent. Monitoring and reporting the use of anti-psychotics in nursing homes is an excellent proposed action, as is providing awareness training and education for professional caregivers.
  3. It would be beneficial to incorporate hospice options into any training module offered to families as well as facilities working with this population.
  4. The design and implementation of a national education initiative is enthusiastically supported. We are still struggling with the same level of stigma 14 years after implementing our Statewide Respite Care Program (for individuals with Alzheimer's disease) in Connecticut, and many conversations with our local Chapter of the Alzheimer's Association underscore this sentiment.
  5. I strongly encourage the Plan team to conduct a comprehensive needs assessment before new activities are initiated. Since many states and individual organizations may already be implementing aspects of the plan, best practices should be observed to obviate unnecessary and costly duplication or delays.

Please contact me or Cynthia Grant our Alzheimer's contract specialist at the above email address should you need more information.

Pam A. Giannini, MSW, DirectorBureau of Aging (SUA)Community & Social Work ServicesDepartment of Social ServicesHartford, CT

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 12, 2012

SUBJECT:  NCMHA Comments on Draft Plan to Address AD

On behalf of the National Coalition on Mental Health and Aging, I am pleased to submit the attached comments on the Draft National Plan to Address Alzheimer's Disease.

Sincerely,

Deborah DiGilio, MPHNCMHA Executive Committee Member

ATTACHMENT:   NCMHA Comments on the Draft National Plan to Address AD.pdf

Available as separate links:
National Coalition on Mental Health and Aging Comments on the Draft National Plan to Address Alzheimer's DiseaseNational Coalition on Mental Health and Aging Comments on the Draft National Plan to Address Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 9, 2012

SUBJECT:  mental health issues with people with Dementia

It is essential that when talking about cures for Alzheimers that the mental health problems associated with this disease be addressed as well.

Otherwise, the job is only being half heartedly.

Hope ReinerSenior Life Enhancement SpecialistHOPE CARES

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 9, 2012

SUBJECT:  Request to orally present this written comment for the Alzheimer's Research, Care, and Services, 3-14-12 Teleconference Advisory Council Meeting

I wish to make this statement on Wednesday, orally, during the Teleconference, and to have these words below and the names of the co-signers, part of the transcript:

For patients who will someday suffer from Alzheimer's and related dementias, Advance Care Planning is most urgent, most important, and most challenging. The process of expressing one's end-of-life wishes in advance warrants both 1) the development of innovative planning tools that are easy, effective, and acceptable to both patients and physicians, and 2) sufficient effort to encourage people to complete them.

Why is Advance Care Planning most urgent? Unlike most diseases, patients who have dementia typically lose mental capacity to make end-of-life medical decisions early in the course of the disease. Once their window of opportunity to make decisions closes, they will not be able to participate in their own end-of-life planning. The huge epidemic predicted for Alzheimer's makes promoting Advance Care Planning urgent on a societal level.

Why is Advance Care Planning most important? Unlike most diseases, patients can linger in the terminal stage of Advanced Dementia for several years. They may frustrate clinicians, caregivers and loved ones as their disease ravages on. The multiple burdens on others are well known. More than one-third of caregivers are depressed. Yet the suffering patients themselves experience is under-appreciated. For too many, pain and suffering may go unrecognized and therefore under-treated for months, or even years.

Why is Advance Care Planning most challenging? Unlike most diseases, there are often no life-sustaining treatments that physicians can withhold or withdraw. Typically, a strong body houses a feeble brain. Many who feel the pang of the "Dementia Fear" consider "premature dying." This kind of thinking is typical: "If I don't kill myself now, I won't be able to kill myself later. I'll be trapped in a condition I hate so much that I'd rather be dead." Those who act on this fear only increase the tragedy of their disease. We must offer patients an effective advance care plan so they can feel confident they can avoid a prolonged dying of months to years with suffering and burdens. Then they will choose to live as long, and as well as possible—as they benefit from improvements in medical and non-medical management of their disease.

Advance Care Planning that specifically includes Advanced Dementia needs funding to develop and implement, even if researchers discover new drugs that delay the onset of symptoms or slow down their progression. Here's why: Changes in the brains of afflicted people start one or more decades before clinical symptoms emerge. Meanwhile, it will at best take many years to prove the safety and efficacy of new drugs and adopt a policy for widespread treatment. Realistically, most of the 76 million baby boomers who are now destined to get dementia will probably still become demented. Even if new drugs were available today, Alzheimer's-afflicted with who do not die of another cause will eventually reach the stage of Advanced Dementia... and, wWhen they do, they will be able to rely only on their Advance Directives, to control how long, and how much, they must suffer before they die.

To reduce end-of-life suffering of millions of victims of Alzheimer's disease and their loved ones, we thus must: 1) develop new Advance Directives that are easy, effective, and acceptable; and, 2) implement programs to encourage people to complete them.

Sincerely,

Stanley A. Terman, PhD, MDMedical Director and CEOCaring Advocates Carlsbad, CA

Ladislav Volicer, MD, PhDUniversity of South FloridaSchool of Aging StudiesTampa, FL

Ronald Baker Miller, MDClinical Professor of Medicine, EmeritusFounding Director of the Program in Medical EthicsUniversity of California IrvineIrvine, CA

Karl E. Steinberg, MD, CMDScripps Coastal Medical CenterAssociate Medical Director for Skilled Nursing CareVista, CA

Thaddeus Mason Pope, JD, PhDDirector, Health Law InstituteHamline University School of LawSaint Paul, MN

Ferdinando L. Mirarchi, D.O., FAAEM, FACEPMedical Director, Department of Emergency MedicineChairman, Hamot Physician Network Governance CouncilPrincipal Investigator, Realistic Interpretation of Advance DirectiveUniversity of Pittsburgh Medical Center at Hamot Erie, PA

Guy Micco, MDClinical ProfessorJoint Medical Program Div. of Health & Medical SciencesDirector, Resource Center on AgingUniversity of California BerkeleyBerkeley, CA

Robert M. Gibson, PhD, JDPsychologist and AttorneySan Diego, CA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 9, 2012

SUBJECT:  Draft National Plan

I would like to comment on the Draft National Plan released by HHS on February 22, 2012. My name is Bruce Lamb and I am a Staff Scientist at the Lerner Research Institute at the Cleveland Clinic, where my laboratory works to understand basic disease mechanisms underlying Alzheimer's disease.

I would first like to congratulate HHS for developing an ambitious plan with admirable overall goals. The five goals identified as building blocks for transformation as well laid out and conceived and most of the details within each sub aim for the goals are well articulated. However, in order to achieve these goals, the plan must be supported by equally ambitious and transformative changes in the funding, organization and monitoring of progress in the fight against Alzheimer's disease as outlined below.

  1. Continued Research InvestmentsThe recent announcement that an additional $50 million will be invested in Alzheimer's research this year and that President Obama has requested an additional $80 million in the FY13 budget is certainly a great start in adding resources in an attempt to meet the Goal 1 to "Prevent and Effectively Treat Alzheimer's Disease by 2025." However, this can only be the first step, towards a larger goal of making strategic investments in Alzheimer's research over the next several years. In coming years, it will be critical to add to these investments, with the ultimate goals of supporting $2 billion of Alzheimer's research per year. If we are truly serious about the ambitious goal of having a prevention/treatment by 2025, this level of investment is required to get us there (as supported by a recent panel of experts assembled by the Alzheimer's Association). These details should be spelled out more clearly in the National Plan. The current draft plan suggests that the initial $130 million in investments in Alzheimer's research proposed in this year and next are "key to advancing this goal (goal 1)." However, in reality, this must represent only the initial investment in a series of increased investments over the next several years.
  2. Research Infrastructure/OrganizationIt remains unclear how the sub aims under goal 1 will be coordinated and organized. To achieve goal 1 of the draft plan, it will be absolutely critical to have an infrastructure and organization that can coordinate federal research efforts across all funding agencies, interact with non-profits and industry, promote awareness of the disease and the role that research will play in combating the disease as well as reporting to the Advisory Council directly as outlined in the plan. In order for this organization/infrastructure to be truly successful and transformative, it will be essential that its efforts are entirely focused on combating Alzheimer's disease. This will provide a uniquely focused organization that will have the most chance of success. A similar "disease-focused" agency was created in 1988 for HIV/AIDS entitled the "Office of AIDS Research" (OAR) within the Office of the NIH Director, that played a key role in successfully coordinating the federal response to AIDS. If we are truly serious about transforming Alzheimer's research and achieving the goals laid out in the plan, a similar type of organizational structure (perhaps an Office of Alzheimer's Research?) is required either within HHS or NIH.
  3. Monitoring ProgressThe conference in May of 2012 will certainly help identify the key research areas that need to be addressed to achieve goal 1 of the plan. However, as part of the plan, there should also be regularly scheduled conferences to assess progress in meeting the goals identified in May. This will not only provide an opportunity to assess whether particular milestones have been met, but also regularly and quickly reassess research priorities. This level of assessment and monitoring is best carried out by an office/infrastructure exclusively focused on meeting goal 1 of the plan (see #2 above).

Thank you for the opportunity to provide input into the Draft National Plan to Address Alzheimer's Disease! Please contact me directly if you have any questions regarding the issues I have addressed here.

Sincerely,

Bruce Lamb, Ph.D.Staff ScientistDepartment of NeurosciencesThe Lerner Research InstituteThe Cleveland Clinic FoundationCleveland, OH

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 9, 2012

SUBJECT:  Draft HHS National Plan to Address Alzheimer's Disease - Comments from Cambridge Cognition

Thank you for the opportunity to comment on the draft HHS National Plan to Address Alzheimer's Disease.

Cambridge Cognition offers the attached document for consideration.

Sincerely

Ruth KeirChief Executive OfficerCambridge Cognition Ltdweb: http://www.cambridgecognition.com

ATTACHMENT:   submission to napa.pdf

Available as separate links:
Comments from Cambridge CognitionCambridge Cognition Comments on Draft National Plan to Address Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 9, 2012

SUBJECT:  National Alzheimer's Plan QUESTION - diagnosis prevents eligibility for long term care insurance

How does the National Alzheimer's Plan address long term care insurance with Alzheimer's diagnosis.

In MD, perhaps nationally, if a person is diagnosed with Alzheimer's, they are NOT eligible for long term care insurance policy -- the very thing they need!

The National Alzheimer's Plan is promoting diagnosis; however this will PREVENT those individuals from getting the type of helpful insurance they need.

What is the plan doing to address this?

Susan Howe CrowsonAlzheimer's Memory Care SpecialistAlzheimer's Education and AdvocacyAlzheimer's Association Ambassadorhttp://www.FamilyCareCoach.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 8, 2012

SUBJECT:  Alzheimer's

Is this disorder reversible? PBS TV indicates this may be the case. Please address-

THX.

Sandy Colhard

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 8, 2012

SUBJECT:  Comments on the draft National Alzheimer's Plan

Attached, please find the National Council for Community Behavioral Healthcare's comments on the draft National Alzheimer's Plan.

Kirsten ReedPolicy AssociateNational Council for Community Behavioral HealthcareWashington, DC 20006

ATTACHMENT:   NAP Letter 2nd draft.doc

Available as separate links:
Comments on the Draft National Alzheimer's PlanNational Council for Community Behavioral Healthcare - Comments on the Draft National Alzheimer’s Plan

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 7, 2012

SUBJECT:  Draft National Plan

I would like to thank this committee for their efforts on this project. I am writing a very long letter and hope someone takes the time to read it and forward to all involved.

As this plan moves forward I can applaud the parts of the plan that involve research and drug development. I am sure it will make the researchers and drug companies very happy!! I have no problem researching earlyon set Alzhemers, but really the brain is an organ just like the heart and lungs. There is no cure for old, period! When a person shows signs of this disease at 75 years of age it is just that, the brain is getting old. The government can dump millions into drugs that they them selves will be paying for. Do you know how much Nemenda costs? Most people that take it could never afford it, so the government pays for a drug that has very little effect on the person that takes it. Financial aid and support to the families trying to care for a loved one at home is where this country will benefit.

I am a 52 year old daughter taking care of an 87 year old father with severe Alzheimers. We have a unique situation where I as well as 2 brothers live next door to my dad on land given to us by him. For the last 10 years I have taken care of him as well as worked and raised a family. I have 2 children who are in the health field, 1 a nurse and 1 in a Doctor Pharmacy program, that I struggle to keep in school since I have had to stop working. In the beginning my dad just required monitoring, meals delivered and laundry done, as the disease progressed we alarmed the house so he could not wander off at night. He tripped and broke his right hip in April 2010, surgery made the disease go crazy and I have been a full time caregiver since that day! My data never took a dime of government assistance, he lived and worked as a construction worker and farmed through some very difficult times. He had maybe $35,000 in an IRA when this began. My brothers help where they can and I private pay caregivers (35 hours per week) with the money he has remaining to the tune of $1400 a month. He collects $1267 social security. So after utilities, insurance, drugs and food the remainder comes from the IRA. You can see that when we pre-pay a funeral he will almost be broke. I stopped working, stay 5 nights a week with my dad. Moving someone to a skilled care only worsens this disease or any dementia. April 2011 dad broke his left hip, Hospital 5 days Nov 2011 for and infection. After every surgery or hospital stay he was sent to skilled care (I use that term very loosely) the very basics are not being met in these homes, my dad was left unattended wet and soiled on a daily basis. He developed pineal yeast infections that went unchecked until I discovered it. This is caused by neglect and poor hygiene The workers are miserable, patients are ignored, no one smiles or even pretends to hear them. Don't believe me, take off your suit and go undercover for a visit. I saw this care across the board in 3 different skilled care facilities. My dad is no longer verbal enough to get a point across, but after every trip to a skilled home I would insist on bringing him home when he looked like death. Home is where it is at!!! Love and proper care, I have him walking with a walker, I have him on a bathroom schedule (he is never wet). At night I taught myself how to use an external catheter (something I had to fight to have Medicare approve). This is an aid that is simple to use and eliminates wetness at night and helps to prevent bedsores.

My dad now receives some help from the area on aging, that provides 3 half days of daycare. This is income based and I am controlled if I want to remain in the program to keep his withdraws from his IRA to a minimum. I do this so he dosen't run out of money therefore forcing him onto Medicaid and forcing us to put him in a home. Where is the burden of care? on me!!! Now we are hearing budgets cut to the access public transportation he rides to and from day care. I will be forced to enroll my dad onto Medicaid this will cost the government more than $9,000 monthly.

We were not rich enough to hire an Elder Attorney to transfer my dads assets out of his name, nor do we feel it was our right. How many rich people are on Medicaid because they were taught to spend down their assets? Not one person in this country should be able to give their undeserving children an inheritance before they die, period! Not one person is more in need of skilled care than my dad 24/7 and I could qualify him in a heart beat if I pre-pay a funeral. However I know without a doubt that I am giving him better care than he would get in a home. He is happy in his home and everyday that he smiles and says thank you is a gift to me!

My recommendations give the families financial help to keep their loved ones at home. Give the care giver that quit her job a tax break, so they can continue to help send their own children to college. Allow people to hire quality private care givers, don't force an agency that charges double the hourly rate on us. Respite care that is now covered only under Medicaid, so that we can a least get a weeksbreak to refresh our minds would be nice! Stop taxing the elderly when they can prove every dime of there money is going to care for themselves. Adult Day care should be a medical expense.

I also see both sides of this story my in-laws were forced by 2 of their children to move to assisted living. They pay $4300 a month and my father-in-law takes care of his wife their and the home is very happy to have them. They should be, he does their job for them and they collect the pay check!!! They hate where they live!

There was a song written over 50 years ago the title is "The House of Shame" by Smiley Bates. My dad would call a local radio station almost every Saturday and request it, he then would call each of his children to tell them listen to it. I challenge you to listen to it, I did! Nothing has really changed in 50 years.

I am sorry this is so long, but unless you know the entire problem you can not fix it.

Sincerely,

Abby KessnerOakdale, PA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 5, 2012

SUBJECT:  Follow up on Informed Consent for Human Research and Testing Question

I request that you please refer the Advisory Council to the following http://ohsr.od.nih.gov/guidelines/nuremberg.html that discusses informed consent requirements for human research testing. Can you please forward this information to the Advisory Committee that is studying human research testing for citizens with Alzheimer's disease who may not be able to give informed consent.

NUREMBERG CODE

  1. The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonable to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment.

    The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.

  2. The experiment should be such as to yield fruitful results for the good of society, unprocurable by other methods or means of study, and not random and unnecessary in nature.
  3. The experiment should be so designed and based on the results of animal experimentation and a knowledge of the natural history of the disease or other problem under study that the anticipated results will justify the performance of the experiment.
  4. The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury.
  5. No experiment should be conducted where there is an a priori reason to believe that death or disabling injury will occur; except, perhaps, in those experiments where the experimental physicians also serve as subjects.
  6. The degree of risk to be taken should never exceed that determined by the humanitarian importance of the problem to be solved by the experiment.
  7. Proper preparations should be made and adequate facilities provided to protect the experimental subject against even remote possibilities of injury, disability, or death.
  8. The experiment should be conducted only by scientifically qualified persons. The highest degree of skill and care should be required through all stages of the experiment of those who conduct or engage in the experiment.
  9. During the course of the experiment the human subject should be at liberty to bring the experiment to an end if he has reached the physical or mental state where continuation of the experiment seems to him to be impossible.
  10. During the course of the experiment the scientist in charge must be prepared to terminate the experiment at any stage, if he has probable cause to believe, in the exercise of the good faith, superior skill and careful judgment required of him that a continuation of the experiment is likely to result in injury, disability, or death to the experimental subject.

Latifa Ring

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 5, 2012

SUBJECT:  Draft National Plan to Address Alzheimer's Disease - Comments

Our company, Constant Care Family Management provides compassionate memory care in a home-like environment to individuals living with Alzheimer's and other forms of dementia.

We are very pleased knowing the Advisory Council is reaching out to the healthcare industry for ideas and input to better develop a well-rounded strategy that takes into account the many facets associated with Alzheimer's and dementia from educating people, broadcasting national awareness, helping the caregivers, to tackling the wandering problem.

Attached, please find our recommendations.

Once again, thank you for bringing this terrible epidemic to the forefront and making it a priority.

Warmest regards,

Dave MillheiserVice President, Marketing and SalesConstant Care Family ManagementThe LaSalle GroupIrving, TX

ATTACHMENT:   National.Plan.to.Address.Alzheimers.Disease.2012.Ver.II.DOCX

Available as separate links:
Comments of Constant Care Family Management Submitted to HSS on the Draft Framework for the National Plan to Address Alzheimer's DiseaseComments of Constant Cate Family Managment Submitted to HSS on the Draft Framework for the National Plan to Address Alzheimer’s Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 5, 2012

SUBJECT:  National Alzheimer's Project Act...Questions?

I was reading through your plan this weekend. CNS Vital Signs http://www.cnsvs.com is a small yet highly successful computerized neurocognitive assessment platform used by over 6500 clinicians in 52 countries. It is regularly used to assess neurocognitive impairment (see attached PDF). It significantly supports the new MCI Guidelines... I noticed Action 2.B.2 (see below) and was wondering if we can get more detailed information as to...

HOW & WHO WILL BE DOING THE ASSESSMENT OF THE NEUROCOGNITIVE ASSESSMENT TOOLS?Will CNS Vital Signs be included in the mix of recommended tools?Is there other contacts I should be making within this endeavor?CNS Vital Signs has been used by most of the major pharmaceutical companies (2000 investigator sites worldwide) in clinical trials and we are working with some academic based neuropsychologists on a new tests. Is it possible for either the academic institutions or our small business to receive some funding to research - enhance the assessment of neurocognition using our assessment platform? How can we as a small business get help?

If you, your staff, or any interested parties would like a FREE TRIAL of our assessment platform... simply register at our website http://www.cnsvs.com; download the LOCAL software app... and begin testing... we also have a WEB app demo at https://www.cnsvs.com/index.php/demo-learn just follow the instructions.

I know this issue is of great importance to our country and we stand ready to help in any way possible.

Action 2.B.2: Identify and disseminate appropriate assessment toolsThe Affordable Care Act created the Medicare Annual Wellness Visit. "Detection of any cognitive impairment" must be included as part of the wellness visit. HHS is using research findings to identify the most appropriate assessment tools that can be used in a variety of outpatient clinical settings to assess cognition. The recommended tools will be distributed to practitioners to aid in identification and evaluation of cognitive impairment and risk for dementia.

Regards,

Craig FitzgeraldVice PresidentCNS Vital SignsConcussion Vital Signshttp://www.cnsvs.comhttp://www.concussionvitalsigns.com

ATTACHMENT:   VSX CNS Vital Signs Memory Healthy Aging White Paper.pdf

Available as separate links:
CNS Vital Signs Memory and Health Aging CNS Vital Signs Memory (MCI, Dementia, Alzheimer's, Etc.) and Healthy Aging

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 4, 2012

SUBJECT:  The NAPA Project

I have worked in the healthcare industry for 20 plus years, specifically with the geriatric population. I am currently the Director of Therapeutic Recreation and Volunteer Services at a long term care facility in New York.

My comments, or rather hopes with this project are really very simple. I deal with individuals who have been diagnosed with Alzheimer's Disease and other types of Dementia and have lived with it for years, by the time they come to our facility they may have lived in the community for 1 to 5 years before a loved knew that taking care of them at home was no longer a safe option.

My hope is that this project builds in funds for caregivers who provide treatment modalities such as therapeutic recreation, music therapy, art therapy etc., treatments that do not include psychopharmacological components only, treatments that treat the individual as a person with a personality, with nuances to their personality,or rather their new personality that has manifested itself via the disease. Things like painting, singing, reminiscing, cooking, gardening etc are in fact very important parts of treatment for the person living with Alzheimer's Disease, and are sometimes the most important aspect related to the quality of life for the person and their families.

Please know that those who provide this type of treatment are people like me, A Certified Dementia Practioner, with a Master's Degree in Community Health, a quality of life specialist, who treat the person as a person and not just a symptom. I do know that this is cliche, but please know how important it is for the day to day activities of these individuals to have meaningful activity with a sense of purpose and focus and most important...dignity.

Please build in funds for these disciplines in this industry, I know how utterly important it is to provide funding for research towards a cure, but these patients, these people, these grandmothers and grandfathers etc. Must have activity and must have some meaningful quality to their lives until the day we find a cure.

Thank you so very much for your time and for working on this project.

Respectfully,

Carolyn Perito

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 4, 2012

SUBJECT:  NAPA

I have read the draft and think it is great. I am a Gerontological Clinical Nurse Specialist and board certified though the ANCC since 1994. I am also a Certified Dementia Practitioner thru the National Council of Certified Dementia Practitioners. I think this type of certified educator would be beneficial. I would love to help in any way I can for this project.

And the final thing is that my Mom was diagnosed with AD last year -- so I am a caregiver as well. Thank you for this great initiative.

Linda J. Hassler, RN, MS, GCNS-BCGeriatric Program Manager Ann May Center for NursingNeptune, NJ

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 3, 2012

SUBJECT:  Comment on Draft National Plan

I was very pleased to see the terminology Alzheimer's Disease and related dementias (ADRD) being used on the NAPA Web page (national-alzheimers-project-act) I am the caregiver for my husband who has a related dementia (Primary Progressive Aphasia). My biggest concern with the draft National Plan document is the overwhelming usage of the term Alzheimer's Disease (AD) throughout the report. There are only two brief references to the other dementias in the entire report. I strongly encourage the Advisory Council to use the acronym ADRD in the final version of the report to replace AD. That kind of terminology would continuously keep those afflicted with "related dementias" in the forefront of the discussion. I also feel that an expanded list of the related dementias should be included in the report, perhaps in an appendix. Currently only four related dementias are mentioned.

Thank you for the wonderful work of the Advisory Council on this very important national concern.

Mary Beth RiednerSchaumburg, IL

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 2, 2012

SUBJECT:  Comment

I did not see anything planned for costs. Why is long term care not covered by Medicare, health insurance or Veterans Administration? Memory care is extremely expensive; it is basically round the clock care by skilled staff trained in Alzheimer care.

CDR Debra J. Hassinan, P.E.Environmental Engineer ConsultantIndian Health ServiceOffice of Environmental Health and EngineeringTempe, AZ

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 2, 2012

SUBJECT:  Etiology of Neuro Degenerative Disease, Alzheimer, MS, Parkinson, ALS, Movies of Cerebro Spinal Fluid Leakage

Some Alzheimer patients show the presence of the amyloid protein. Leakage of Cerebro Spinal Fluid antigenic proteins, like the antigenic tau proteins, could be the source of the antigens generating the autoimmune reactions as the origin of Alzheimer lesions.

The tau proteins have been identified as a significant participant in Alzheimer's disease. There are indications that they are originating in the ventricular cerebro spinal fluid and leaking as a result of intercranial pressure. Alzheimer's may be the result of pathologic CSF hydrodynamics. If this condition can be corrected it could halt the progress of Alzheimer's.

Movies, detecting CSF leakage, with the Fonar, Upright MRI can be seen on the first page of our website http://www.fonar.com. This can be corrected as seen at http://www.fonar.com/news/110211.html.

These new findings are important in understanding neuro degenerative disease, not only Alzheimers. We would be available to speak speak to you in more detail.

Sincerely yours,

Art Bradyhttp://www.fonar.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 2, 2012

SUBJECT:  Comment re: Draft National Alzheimer's Plan

Thanks for distributing my comments to the Advisory Board.

Dave AxelsonRedmond, OR

ATTACHMENT:   ALZ DRAFT PLAN COMMENTARY.docx

Available as separate links:
Commentary Re: "Draft National Plan to Address Alzheimer's Disease"Commentary Re: “Draft National Plan To Address Alzheimer’s Disease”

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  March 1, 2012

SUBJECT:  let's change

I am filled with wonder reading about the American historical decision in the ADRD problem: NAPA. It's not only a simple Government decision, but also a decision of the American People. The US Government and People continues to be an example and source of inspiration for all the World, because the ADRD problem involve the human, especially the human future.

In my opinion, the key of the origin of the ADRD will changed all the clasical medical science. It's inevitable to reflect about new ways, about new concepts in the medical science. For example, think only about one fact: in the fatal moment of an AD patient, frequently all the serum general data of this patient are...perfect.

Sicerely,

Cristian SOCOLOV.

[Return to Public Comment Index or This Year's Table of Contents]

FEBRUARY 2012 COMMENTS

DATE:  February 29, 2012

SUBJECT:  Alzheimer's Plan

The plan is comprehensive but fails to address a fundamental problem. The real funding decisions are made by the "peer review" process, and in Alzheimer's, at least, the peer review process is seriously flawed and excludes new researchers with new ideas, not because the reviewers consciously want to do this, but because the system makes it almost inevitable.

The reviewers, like all good scientists, are convinced their own ideas are right and worried that giving money to those with different ideas will take away funds from their own research and cost lives. Moreover, because they are working full time on their own research they clearly have no time to actually read the papers of grant applicants and just glance at the number of publications and the journals they appeared in. They tend to decide early on whether they support or oppose an idea, and go with their gut, providing details only to justify their position. This turns labs into paper mills that produce no real advances. Consequently I have been told many times that the only way to get funding for a new idea is to complete the entire study before applying for funding.

I work on the fundamental biochemistry of Alzheimer's, in the laboratory of Dr. Shaohua Xu, who was the first to image tau colloids using atomic force microscopy. We've worked months on NIH grants that were turned down by reviewers who obviously had not read the relevant papers and did not even make an effort to understand the proposal. Having research section members recuse themselves from judging their own grants obviously does not make this process objective; scientists are as susceptible to bias as any other human being. To deny this problem denies basic human psychology.

IF NIH expects to solve this problem, the NIH research section directors, who are not supported by grants, should have the authority to make the final funding decisions. They may have the help of reviewers but should have the full power to accept or reject reviewers' comments. They may not choose to fund our proposals, but at least they will be unbiased, and they have an incentive to find a cure, not to defend a theory.

Respectfully,

Dan Woodard, MDKennedy Space Center, FL

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 29, 2012

SUBJECT:  National Alzheimers Project Act

I have been following the updates on the National Plan and wanted to make sure you were aware of Dakim in the event there are any partnership opportunities that you become aware of that could benefit from our brain fitness program under the goals established in the plan.

Dakim was started by Dan Michel as a result of his personal experience caring for his father who suffered from Alzheimer's. During that ordeal he noticed that every time he challenged his dad with something new his father was more alert, focused and his mood was improved.........(empirical evidence). He then started to become aware of the research studies describing neuroplasticity and which linked long term cognitive stimulation, where different areas of the brain are routinely exercised, with reduced symptoms of dementia. When he looked to purchase a product or program that did just that, he found nothing.........so he decided to build one.

The result is Dakim BrainFitness. Our program is the number one brain fitness solution sold to America's senior living market and we are now offering as a DVD software package to seniors aging in place at home and to healthcare professionals to use with their patients suffering from cognitive decline.

Our product was designed, from day one, to be used by boomers and seniors, the group most at risk for Alzheimer's disease. It has also been clinically tested by UCLA and shown to improve memory in the folks that regularly used it. Dakim BrainFitness is not a cure, but it is helping individuals and families as they attempt to cope with the disease.

I would be most pleased to send you a copy of our software so you and your staff are aware of its existence. But most important to me is that we become involved in some way with what you and your staff are doing so we do not get excluded from any initiatives that could benefit from all the work we have done to help stimulate the minds of our aging population!!

If you would kindly point me in the right direction, or let me know who to contact, it would be most appreciated. Thanks in advance very much for your assistance and I hope to meet you in person in the near future.

P.S. I noticed on Linkedin that you earned your doctorate at USF. Our program is currently being used in another clinical trial being conducted by USF. The lead investigator is Elizabeth Gagnon-Hudak, Doctoral Student, School of Aging Studies, USF.

Richard SillVP SalesDakim, Inc.Santa Monica, CA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 29, 2012

SUBJECT:  Comment

Comment: I have had the opportunity to work with those struggling with Alzheimer's and other dementias and their caregivers for over 17 years. My main observation and suggestion is that these are very strong ,and willing individuals who have been presented with a huge challenge which last for many years and effects an entire family not just one individual. The best and most effective treatment out there is maintaining the historic emotional connection these individuals have with each other. This can be done through recognizing those caregivers and supporting them through strong educational and emotional support and respite care programs, such as Adult day programs.

Our physicians also need strong support in education and encouragement to assist those dealing with the many challenges of dementia. Recognize those who specialize in geriatric care.

Thank you for recognizing the challenge facing our nation with this disease and starting the process of dealing with it.

Ginny Berube ,BSSWCase managerCamano Island, WA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 28, 2012

SUBJECT:  Comments on NAPA Draft

First, thanks so very much to the committee and the US government for a comprehensive thoughtful plan. It is concrete. It is clear. And it is so encouraging to read! Please accept my comments below in context of my deep gratitude for all the work and initiative that created a plan worthy of response.

I have been a caregiver of two parents with AD/dementia over the past 4-5 years. As I tackled the problems of one, then two parents with AD/dementia, first cross country, then moving my mom to my city after losing my dad, I've been on a steep learning curve (over four years and counting) to learn and understand what's happening, what's the best thing to do, etc. I have grown as a caregiver, after having been a high-technology marketing executive for 20+ years. I am still learning, but I am also now a strong resource, having learned a great deal as I've grown with this responsibility.

Again, please know these comments are in response to a terrific draft.Pg. 6, Guiding principle 3: Transform the way we approach Alzheimer's disease. Completely agree. Would like to see "transformation" more aggressively articulated and delivered in Strategies for Goals 2-4.

Goal 1 & Strategies, pgs. 7-12, all reflect the three guiding principles, and demonstrate vision, initiative and innovation. Goal #1 strategies are impressively aggressive and actively embrace the acceleration in scientific and medical discoveries that is happening.

Goals 2-4 & Strategies, pgs. 13-27, are thorough but not transformative, not ambitious enough, not innovative, not visionary - they seem more safe, incremental, rote. Unlike Goal 1, Goals 2-4 are not "crossing the chasm" (per Geoffrey Moore's term for technologies that break with the past). "Breaking with the past" matters because a safe plan will not drive change fast enough to retrain the medical, legal and financial communities, support families and caregivers sufficiently, or change the cultural landscape to rally NOW. Here are a few thoughts about enhancing Goals 2-4 to make them more transformative, but innovation could be pushed even farther -

  1. Goals 2 and 3: For Caregivers, create a more transformative vision and more proactive, innovative strategies that view them not just in need of support and education, but as an active resource and collaborative partner. In the first stages of stepping up to caregiving, I yearned for direct, straightforward information. I felt too many people hesitated to teach me how to think about Alzheimer's because a) they really didn't know and 2) every patient is different. But I've learned a lot that now could be shared, and much more quickly than I was taught. Five years later, I've stepped up, and I am now a strong resource. I realize that caregivers need a lot of support, but please leverage our expertise too. I do not want to be viewed as weak, helpless, or a victim. I want to be viewed as a collaborative partner with the ability to constructively contribute to a team and care plan. I know a lot of other caregivers have the same strength. Caregivers deserve recognition not only for their ongoing contribution, but also their varied skill levels and ability to actively participate in care planning, as well as training, with health care professionals. Develop a) a scale that measures caregiver experience and b) programs that harness and leverage experience. Create web-based training modules that track a caregiver's growing capabilities. In the Draft Plan, change language that views caregivers as "helped", "supported" and "dependent" on the system. Where appropriate, decouple caregivers from those with AD, again to include them in a more active collaborative model, not just attached to their loved ones with AD.

    Other suggestions to add a little more transformation into Goals 2 and 3 -

    • Add an Action 2.A.7 that develops a way to connect experienced caregivers to the health care "workforce" - recognize an active role for caregivers.
    • In Strategy 3.B, add an Action for Caregiver Financial Supports, including social security credit, tax credits, and 401k waiver of fees for those who lose income when they must support family with Alzheimer's and cannot continue to work. As an experienced business person/MBA, I felt unsupported and invisible by a lack of financial support/incentive. A few changes would not only offer a financial boost, but a moral boost. It's depressing to be financially invisible/taken for granted, even as one works to do the right thing.
    • Strategy 3.C reads as though it's all about money and the pros know best. The source and the message are as much the problem as the audience. "Educating people about their potential needs" requires an honest setting of expectations that frankly I have not seen in medical professionals and certainly not financial professionals. This section needs a more transformative, "glass breaking" approach, not simply awareness building. People know a little about LTC, etc., but the costs are high and the sales pitches are muddled. (My parents had LTC insurance and it has made a tremendous difference.)
    • Strategy 3.D is very important and is very clear. Action 3.D.1- please insert "Educate legal <and financial> professionals..." because financial professionals aren't very informed either about the impact of the disease on an elder's ability to make financial decisions.
    • Action 3.D.2 is transformative. So is Strategy 3.E. Thank you.
  2. To achieve transformation, Goal 4 needs a more aggressive, ambitious articulation with trackable results that are very high impact. The current Goal 4 does not reflect a vision or ambition for awareness building. Strategy 4.A, "Educate the public about AD" seems tame, neither aggressive nor transformative. Public awareness of AD is high, but based on bad information and stigmas. The stigma of AD prevents learning. Campaign strategy needs to aim higher than awareness building: start with the goal of erasing the stigma of AD, and replacing it with an embrace of the humanity of those with AD and the ambitions to eradicate AD.

Again, please know how grateful I am, as a caregiver to two parents with AD/dementia, that a National Plan to attack Alzheimer's exists. I send these comments from the front line, and ask that you consider them with the respect and gratitude in which they are offered.

Sincerely,

Suzanne BrisendineSan Francisco, CA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 28, 2012

SUBJECT:  Public Comments on the Draft National Alzheimer's Plan

Please find attached the public comments on the draft of the National Alzheimer's Plan by the Rosalynn Carter Institute for Caregiving. I note that in several areas of the draft are opportunities to serve on a panel or participate in a meeting. Please know that the Rosalynn Carter Institute for Caregiving would be willing to serve and work together to address the needs of caregivers caring for those with Alzheimer's disease.

Thanks,

Leisa Easom, PhD, RNExecutive DirectorRosalynn Carter Institute for CaregivingGeorgia Southwestern State University Americus, GA

ATTACHMENT:   National Alzheimer's Plan Public Comments.pdf

Available as separate links:
Public Comments on Draft National Plan to Address Alzheimer's diseaseRosalynn Carter Institute for Caregiving - Public Comments on Draft National Plan to Address Alzheimer’s disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 27, 2012

SUBJECT:  A national plan to address Alzheimer's

I strongly support Mr. Vradenberg's plan and plea to eliminate alzheimers disease by 2025, It is clearly becoming epidenic in proportion and needs strong advocacy and support. only the government with private help can produce these results so let us push for both.

Carolyn Alper

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 26, 2012

SUBJECT:  Public comment on National Plan to overcome Alzheimer's disease and related dementias

  1. Please support neurologists who want to specialize in behavioral neurology & neuropsychiatry. We are not mentioned in Action 2.A.2.Action 2.A.2: Encourage providers to pursue careers in geriatric specialtiesHHS will enhance three programs that encourage providers to focus on geriatric specialties. The Comprehensive Geriatric Education Program, as mandated by the Affordable Care Act, provides traineeships to support students pursuing advanced degrees in geriatric nursing, long-term services and supports, and gero-psychiatric nursing. In addition, HRSA will continue to support training projects that provide fellowships for individuals studying to be geriatricians, geriatric dentists, or geriatric psychiatrists. These programs prepare professionals to address the needs of people with Alzheimer's disease through service rotations in different care settings. HRSA will also continue to support the career development of geriatric specialists in academia through the Geriatric Academic Career Awards Program. Currently 65 percent of these awardees provide interprofessional clinical training on Alzheimer's disease.
  2. Please consider the neurologists who many patients consider their primary physicians. May neurologist shy away from taking care of patients with dementia because of the time required and low reimbursement for this cognitive speciality.Action 2.E.1: Evaluate the effectiveness of medical home models for people with ADMedical homes utilize a team approach to provide care and to improve the quality and coordination of health care services. CMMI is currently carrying out the Multi-payer Advanced Primary Care Practice Demonstration and the Comprehensive Primary Care initiative to measure the effectiveness of medical home models. CMMI will conduct subgroup analyses to examine changes in care quality and care coordination among people with AD to explore whether these models lead to more effective and efficient care.

Mary Ellen Quiceno, M.D.Assistant Professor of NeurologyDirector, Cognitive & Memory Disorders ClinicLeader, Education & Information Core of the Alzheimer Disease CenterUniversity of Texas Southwestern Medical Center at Dallas

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 26, 2012

SUBJECT:  New Alzheimer's Initiative

It is interesting that the NIA-AA definitions for Dementia are not used in this proposal. And yet, other causes of Dementia are included (Alzheimer's disease and related dementias) I suggest that there be some consistency and support for other groups working on this project by at least using the same terminology.

This should be an effort to decrease dementia with an emphasis on funds to treat the things we can treat, funds to research the things we can not yet treat and funds to support the families and caregivers of all those with dementia.

Michael Raab, MD

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 24, 2012

SUBJECT:  PUBLIC COMMENT ON FEDERAL REGISTER this agency will vote to fill the elders with 200 vaccines to make money off their bodies

I AM WRITING TO COMPLAINT ABOUT $130 MILLION ALL OF A SUDDEN BEING USED BY OBAMA IN AN ATTEMPT TO WIN VOTES. HE DID NOTH ING ON THIS FOR 3 YEARS. NOW WITH ELECTION COMING UP, HE STARTS SPENDING AND SPENDING AND SPENDING. I SEE A WHOLE LOT OF FAT CAT BUREAUCRATS ARE GETTING JOBS. THE PLAN WILL BE A LOT OF FAT CAT BUREUACRAT RELATIVES OF POLITICIANS WILL GET JOBS. THEY WILL HAVE MEETINGS AND SIT AROUND FOR 2 OR 3 YEARS UNTIL THE MONEY IS GONE. WHEN MONEY IS GONE, NOT ONE DARN THING WILL HAVE CHANGED IN AMERICA. THESE GOVT AGENCIES ARE THE BIGGEST WASTERS OF TIME AND MONEY ON THE GLOBE. THE BUDGET FOR THIS SHOULD BE ZERO. THIS AGENCY SHOULD HAVE BEEN GIVEN THE PROJECT WITH NO ADDITIONAL FUNDS AT ALL. THESE EMPLOYEES WASTE TIME EVERY DAY.

JEAN PUBLIC

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Date: Fri, 24 Feb 2012 10:37:25 -0500Subject: this agency will vote to fill the elders with 200 vaccines to make money off their bodiesFrom: [withheld]To: [withheld]

[Federal Register Volume 77, Number 37 (Friday, February 24, 2012)][Notices][Pages 11116-11117]From the Federal Register Online via the Government Printing Office [http://www.gpo.gov][FR Doc No: 2012-4278]

=========================

-------------------------

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Draft National Plan To Address Alzheimer's Disease

AGENCY: Office of the Assistant Secretary for Planning and Evaluation, Department of Health and Human Services.

ACTION: Comment period.

-------------------------

SUMMARY: HHS is soliciting public input on the draft National Plan to Address Alzheimer's Disease, which is available at national-plan-address-alzheimer’s-disease

DATES: Submit input by email or USPS mail before March 30, 2012.

ADDRESSES: You may submit your comments in one of two ways:

  1. Electronically. You may submit electronic comments to napa@hhs.gov
  2. By mail. You may mail written comments to: Helen Lamont, Ph.D., Office of the Assistant Secretary for Planning and Evaluation, Room 424E Humphrey Building, Department of Health and Human Services, 200 Independence Avenue SW., Washington, DC 20201.

Please allow sufficient time for mailed comments to be received before the close of the comment period.

FOR FURTHER INFORMATION CONTACT: Helen Lamont (202) 690-7996, helen.lamont@hhs.gov.

SUPPLEMENTARY INFORMATION: Inspection of all Public Comments: All comments received before the close of the comment period are available for viewing by the public, including any personally identifiable or confidential business information that is included in a comment. We post all comments received on the following Web site as soon as possible after they have been received: national-alzheimers-project-act#NAPA Public Comments

Background

On January 4, 2011, President Barack Obama signed into law the National Alzheimer's Project Act (NAPA), requiring the Secretary of the U.S. Department of Health and Human Services (HHS) to establish the National Alzheimer's Project to:

[[Page 11117]]

  • Create and maintain an integrated national plan to overcome Alzheimer's disease.
  • Coordinate Alzheimer's disease research and services across all federal agencies.
  • Accelerate the development of treatments that would prevent, halt, or reverse the course of Alzheimer's disease.
  • Improve early diagnosis and coordination of care and treatment of Alzheimer's disease.
  • Improve outcomes for ethnic and racial minority populations that are at higher risk for Alzheimer's disease.
  • Coordinate with international bodies to fight Alzheimer's globally.

The law also establishes the Advisory Council on Alzheimer's Research, Care, and Services and requires the Secretary of HHS, in collaboration with the Advisory Council, to create and maintain a national plan to overcome Alzheimer's disease (AD).

On February 22, 2012, HHS released a draft National Plan to Address Alzheimer's Disease. The draft National Plan has five goals:

  1. Prevent and Effectively Treat Alzheimer's Disease by 2025.
  2. Optimize Care Quality and Efficiency.
  3. Expand Supports for People with Alzheimer's Disease and Their Families.
  4. Enhance Public Awareness and Engagement.
  5. Track Progress and Drive Improvement.

The draft National Plan includes strategies to achieve each goal and specific actions that HHS or its federal partners will take to drive progress towards achieving the goal.

Sherry Glied,Assistant Secretary for Planning and Evaluation. [FR Doc. 2012-4278 Filed 2-23-12; 8:45 am]BILLING CODE P

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 24, 2012

SUBJECT:  Informed Consent for Human Research and Testing Question

What EXACTLY is HHS and NIH doing to ensure that people who are enrolled in your Medical (Human) Research and Clinical Trials that you are desperately trying to recruit Alzheimer's patients for have the CAPACITY to give INFORMED CONSENT?

History has shown that some of the most abusive governments in History used vulnerable elderly and incapacitated patients for medical and human research. This was addressed international laws and federal laws in this country.

As an elder rights advocate, I am extremely concerned about the mad rush to do testing on individuals who have been declared incompetent or incapacitated and who do not have the capacity to give informed consent. No surrogate decision maker should be allowed to give informed consent on behalf of any other human being. The surrogate decision maker cannot feel the pain and horrific side effects and the incapacitated person with Alzheimer's may suffer immensely but not be able to even communicate the pain they are involuntarily being forced to endure.

What do you plan to do about this? An all out campaign is needed to HALT any plans to use incapacitated Alzheimer's and dementia patients for human research trials (including drug and other medical research) without informed consent being provided by the individual who will be subjected to the human research and testing!

The press needs to get involved in warning the American people about this travesty.

Please let me know what we can do to ensure that these concerns are addressed.

Latifa RingNational Organization To Stop Elder Abuse and Guardianship Abusehttp://www.stopelderabuse.net

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 24, 2012

SUBJECT:  COMMENTS ON NAPA ACT DRAFT PLAN

OVERALL I FIND THE DRAFT PLAN A REASONABLE AND READABLE DOCUMENT, EVEN THE HHS BOILERPLATE. I HAVE SOME COMMENTS WHICH ARE BASED ON MY OWN EXPERIENCE, WHICH I WILL STATE BRIEFLY: MY WIFE, MARTHA, WAS DIAGNOSED WITH A/D AND COPD IN THE FALL OF 2007. I CARED FOR HER AT HOME WITH SOME RESPITE ASSISTANCE UNTIL I COULD NO LONGER DO SO IN JULY OF 2009. I MOVED HER TO AN ASSISTED LIVING FACILITY FOR SIX MONTHS AFTER WHICH TWO HOSPITALIZATIONS MADE IT NECESSARY TO PUT HER IN A HOSPICE FACILITY FOR THE NEXT SIX MONTHS. IN JUNE OF 2010 I BROUGHT HER TO THE HOUSE ON HOME HOSPICE. I WILL NEVER REGRET DOING THAT. AFTER 55 DAYS, ON AUGUST 4th, 2010, SHE DIED.

***

PAGE TWO OF THE PLAN LISTS FOUR GOALS. TWO OF THEM ARE: "... ENHANCE HEALTHCARE PROVIDERS' KNOWLEDGE ...", AND "... SUPPORT FOR PEOPLE WITH ALZHEIMER'S DISEASE AND CAREGIVERS ...". THEY ARE IN THE MIDDLE OF THE GOALS. I THINK THAT THEY SHOULD BE GIVEN MORE PROMINENCE AND A GREATER SENSE OF URGENCY. WHY? BECAUSE DISCONTINUITIES IN AVAILABLE MEDICAL CARE ARE A SERIOUS AND GROWING PROBLEM - RIGHT NOW - AND ALZHEIMER'S SUFFERERS AND THEIR CAREGIVERS ARE PAYING THE PRICE - RIGHT NOW. WE ALL HOPE THAT EVENTUALLY A CURE WILL BE FOUND FOR ALZHEIMER'S. BUT AN IMMEDIATE AND MORE ACUTE PROBLEM IS COHERENT AND GRADUATED CARE FOR ALZHEIMER'S AS THE DISEASE PROGRESSES, AND RELIEF FOR THE BURDEN THIS PLACES ON CAREGIVERS.

***

THIS IS WHAT HAPPENED TO US:

  1. IT WAS LIKE PULLING TEETH TO GET A DIAGNOSIS. AFTER TWO $600 SESSIONS WITH A MEDICAL "EXPERT" IN THE SPRING AND FALL OF 2007, HE STILL WOULD NOT DIAGNOSE A/D. OUR FAMILY DOCTOR, AN INTERNIST, HAD TO MAKE THE CALL AND BEGIN TREATMENT.
  2. IN JULY 2009, AFTER A HELLISH TWO WEEKS IN A BEHAVIORAL HEALTH CLINIC TO GET THE RIGHT DOSAGE OF A/D DRUGS, THE DOSAGES STILL WERE NOT RIGHT AND OUR INTERNIST HAD TO MAKE THE ADJUSTMENTS LATER.
  3. BY THE FALL OF 2009 15-MINUTE APPOINTMENTS WITH OUR INTERNIST WERE NO LONGER ENOUGH BUT THERE WAS NO AVAILABLE MEDICAL "NEXT STEP". I FOUND THAT AT LEAST IN NORTHERN MISSISSIPPI, ALL THE GERIATRICIANS HAVE BEEN COOPTED AND ABSORBED BY THE HOSPITAL-HOSPICE, NURSING HOME OR HOSPICE INDUSTRIES. THESE INSTITUTIONS ARE NOT DESIGNED FOR AND DO NOT WANT ALZHEIMER'S PATIENTS. THEY PREFER PATIENTS WHO NEED MONEY-MAKING REHABILITATIVE THERAPIES.
  4. MONEY IS NOT THE WHOLE ANSWER. WE HAD NURSING HOME INSURANCE, WHICH WOULD HAVE PAID UP TO $254 A DAY. NURSING HOMES COSTING $230 A DAY HAD NO OPENINGS, PREFERRING PATIENTS NEEDING THERAPIES. I OPTED FOR A $90 A DAY ASSISTED LIVING FACILITY, WHICH WAS FINE UNTIL SHE WAS BED-RIDDEN AND HER NEEDS BECAME TOO GREAT FOR ASSISTED LIVING. AS IT WAS, BECAUSE OF THE 90-DAY EXCLUSION ON OUR NURSING HOME INSURANCE, WE BARELY BROKE EVEN ON THAT POLICY.
  5. THE NEXT TRANSITION, AND IT WAS ABRUPT, WAS TO A HOSPICE FACILITY. THE HOSPICE BILLED MEDICARE $1000 A DAY FOR HER CARE. HER CARE THERE WAS PERHAPS TWICE AS GOOD AS IN ASSISTED LIVING, BUT IT WAS NOT ELEVEN TIMES AS GOOD AS THE BILLING WOULD SUGGEST. THE MEDICARE HOSPICE BENEFIT IS A WONDERFUL THING, BUT THE HOSPICE INDUSTRY IS GETTING FAT ON WHAT IT CHARGES, AND IT IS COMPLETELY INADEQUATE FOR THE TREATMENT OF ALZHEIMER'S.
  6. THE LAST TRANSITION WAS IN JUNE OF 2010 AND IT WAS ALSO ABRUPT. I WAS TOLD SHE HAD TIMED OUT OF IN-PATIENT HOSPICE. I FOUND THAT NURSING HOMES WERE STILL NOT INTERESTED IN HER AS A PATIENT SO I OPTED FOR HOME HOSPICE. I PERSONALLY PREFERRED THAT TO A NURSING HOME, BUT EVEN THOUGH I HIRED A CNA AND AN LPN TO SUPPLEMENT MY EFFORTS AND THE HOME HOSPICE EFFORT, WHICH WAS UNEVEN, HER CARE WAS NOT AS GOOD AS THAT IN A NURSING HOME . BUT, HOME HOSPICE STILL BILLED MEDICARE $250 A DAY, WHICH WAS MORE THAN A NURSING HOME.

***

I SAY AGAIN THAT CONTINUITY OF COHERENT AND GRADUATED MEDICAL CARE FOR THE ALZHEIMER'S PATIENT AND RELIEF FOR THE CAREGIVER IS AN ACUTE AND GROWING PROBLEM THAT NEEDS GREATER EMPHASIS IN YOUR PLAN. IT IS A - RIGHT NOW - PROBLEM, NOT SOMETHING THAT CAN BE CHIPPED AWAY AT OVER TIME. BECAUSE OF MY WIFE'S COPD COMPLICATION, WHICH REQUIRED 24/7 OXYGEN, OUR ORDEAL WAS MERCIFULLY SHORTER, LESS THAN THREE YEARS, THAN IS TYPICAL FOR ALZHEIMER'S PATIENTS AND CAREGIVERS. OTHERS HAVE IT HARDER THAN WE DID.

***

I HAVE DETAILED RECORDS FOR EVERYTHING I HAVE SAID ABOVE. I CAN PROVIDE ANYTHING MORE THAT YOU NEED FROM ME.

THOMAS A. LOGANBELDEN, MS

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 24, 2012

SUBJECT:  alzheimer's project

Adult day health services should be an important part of any plan to either slow the progress of Alzheimer's, improve quality of life, or to support caregivers.

Social interaction, rather than isolation at home, and physical and mental stimulation are keys to slowing memory loss, preventing agitation, and enhancing life.

Caregivers of people with Alzheimer's are more likely to suffer debilitating illnesses themselves so respite is important. Adult day health services can be all of the above.

Linda CabinessCommunity Outreach CoordinatorLife Enrichment Center Adult Day Care & Health ServiceShelby, NChttp://www.lifeenrichmentcenter.org

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 24, 2012

SUBJECT:  Comment (National Proposal for $1B+ Heatlchare cost savings annually)

Please post the attached Comment/Proposal, which could potentially save the nation $1B+ annually in national healthcare costs through innovation and prevention relative to Dementia. I would appreciate a confirmation email. Thank you.

Ray AshtonFounder, STAR-10RChairman, CEOSTAR Preventive WellnessAFFECTS LLChttp://www.affects.biz

ATTACHMENT:   STAR-10R Proposal.docx

Available as separate links:
Proposal: Early Stage Dementia Care (STAR-10R), a New Thinking For Dementia CareEarly Stage Dementia Care (STAR-10R), a New Thinking For Dementia Care

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 23, 2012

SUBJECT:  draft National Alzheimer's Plan

As a 66-year old woman who is conservator for a relative with Alzheimer's and who has watched several other relatives lose their mental faculties and eventually all their other faculties before they died a very long drawn out death, I cannot urge you enough to increase the amount of money spent on research into Alzheimer's and other dementia diseases. Yes, Alzheimer's is devastating to the individual and possibly even more so to the families and caregivers.

When I see that HIV/AIDS research receives about $3 billion from our government whereas Alzheimer's, with 5 times as many affected Americans as there are American HIV patients, even with this new initiative will only get half a billion dollars, I truly don't understand why research into Alzheimer's is so underfunded. I also don't understand why HIV/AIDS patients receive much more government paid assistance than patients with most other diseases. I'm afraid the Alzheimer's lobby has not been vocal enough unlike the HIV/AIDS lobby. But I admire what has been accomplished in making HIV now a treatable chronic illness because of the resources invested in that research.

Don't waste a lot of funding looking for more expensive ways to diagnose Alzheimer's when simple questionnaires and interviews can determine that dementia is present or not. Since dementia is not contagious early diagnosis is only helpful for getting your affairs in order until a viable treatment is discovered.

Unfortunately none of the drugs currently used for Alzheimer's have any long-term benefit and even short-term benefits are questionable. Basic research into what causes or leads to Alzheimer's is where most of the funding needs to go. Hopefully this could lead to understanding how to avoid Alzheimer's altogether as prevention is always preferable and less expensive than treatment. It is is important to include nutritional supplements such as curcumin and vinpocetine in the research since studies have demonstrated some success with several supplements. Just because they can't be patented by drug companies, not enough money is being spent on their research. How cost effective they would be for both patients and the health care system.

If prevention and/or treatment of Alzheimer's and other dementias is not found soon the cost to the government will be astronomical in the future, as families have less ability and inclination to care for dementia patients at home. I predict dementia patients will frequently be abandoned so they can receive medicaid-paid nursing home care.

I urge the Alzheimer's plan to be implemented quickly and research funding be increased exponentially.

Martha DragooColusa, CA

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DATE:  February 23, 2012

SUBJECT:  NAPA

$450 million for Alzheimer's research; $3 billion for AIDS. In 2011, total Medicare and Medicaid spending for individuals with Alzheimer's disease was estimated at $130 billion. $450 million is NOT enough and 2025 is NOT soon enough. We can do better. Spend the money on the front end; alleviate the suffering and find a cure NOW!

Lynda Everman

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DATE:  February 23, 2012

SUBJECT:  Comment on Draft National Plan to Address Alzheimer's Disease and Related Dementias

Although the draft does make mention of the use of psychologists in the treatment and care of Alzheimer's disease, I find it curious that nowhere in the draft is the role of clinical neuropsychologists and early assessment of cognitive problems mentioned (particularly under the heading Strategy 1.C: Accelerate efforts to identify early and presymptomatic stages of Alzheimer's disease).

This lack of attention to the role well qualified clinical neuropsychologists can have in early detection is unfortunate given that a thorough assessment can often differentiate between Alzheimer's disease and other cognitive concerns before anything is found on neuroimaging, leading to earlier interventions.

Liv E. Miller, Psy.D.Clinical NeuropsychologistCentral Arkansas Veterans Healthcare SystemNorth Little Rock, AR

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 23, 2012

SUBJECT:  comments re Draft National Plan to Address Alzheimer's Disease and Related Dementias

In reference to the Draft National Plan to Address Alzheimer's Disease and Related Dementias, as a psychologist I have found that I have been able to start the process of Alzheimer's identification by simple screenings such as MMSE or RBANS. If the Alzheimer's process is far advanced the screens alone can be sufficient, if not, it's an indication for further neuropsychological testing. I have found working in an outpatient primary care clinic that physicians rely on psychologists to help them with diagnosis of memory or other cognitive disorders. Psychologists and neuropsychologists then, should be an integral part of this initiative.

Christina Stauble, Psy.DClinical PsychologistJacksonville OPC, NF/SGVAMC

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DATE:  February 23, 2012

SUBJECT:  Meet with President Obama

By now I think most of you know who I am. I will be coming to Washington DC in April from the 23-25. I had the opportunity to meet with many members of congress and senate this past year. I even had an opportunity to speak with Melody Barnes and Jeff Crowley, but it saddens me that they moved on. I would love to have the opportunity to meet with, President Obama, so he can personally understand what people like me deal with and our needs. I hope he is willing to hear from one of his constituents, that represents so many.

I am reaching out to many of you because I am hoping one, will be able to pave the way for my visit. Please help me accomplish this goal, while my mind is still functioning. If at all possible I would like to meet on the 25th, if that is not doable, I can be there on the other days. Remember I am 53 years old and most people are not willing to take this step, but someone must for all those who can't.

Please help me with my dreams of changing this world around Alzheimer's.

Regards,

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money"http://www.michaelellenbogen.comJamison PA

P.S. I will need access for my wife Shari, who is in the medical profession, and someone from the Alzheimer Association to accompany us.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 23, 2012

SUBJECT:  Public Comments

Please address the lack of funding to provide intermediate care (Assisted Living) for those with early Dementia. This group often can no longer live at home safely, due to lack of family support or resources, but are not yet debilitated enough to meet criteria for Nursing home. Few insurance policies cover Assist living, and Medicare doesn't cover this setting either. There is a state program which with a "wavier" funding is available, but this doesn't nearly cover all who could benefit from this level of care. Thank you for considering this important issue.

Leslie A. Briscoe CNPCleveland, OH

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DATE:  February 23, 2012

SUBJECT:  Life an ego-friendly lifestyle

In relation to your research,published by the European College on Psychopharmacology, published by Reuters agency on 05.09.2011, from Prof.Dr.Hans-Ulrich Wittchen,I'm sending you the attached material.

SCREEN OF THE HEALTH IN THE HAIRY BACK

Today we are living in a wold filed with tension, broken families, psychological whirlpool and local wars.The human self is torn apart, and it seems that prevents milion of people from being together and free.We consider that the reason for this is the Syndrom of the Emotional Breakdown (SEB),that has a visible external sign.We are convinced that there is a functional virus,that penetrates the limbic system of the human barain,as a result of improper emotional impact.

Reretfully,during the course of evolution,the human had developed his brain to a level,to be able to hurt himself by means of thoughts.There exist mental viruses,or functional viruses.They cause a contamination in the emotional assessments of the humans,and as a result of this he develops a diagnoses SEB.The contaminated person generates in the course of his daily life toxic thoughts that create in egological contamination.

In a person living with SEB, in the hairy back of the head could be visualised a red patch in different shades - from light pink , through bright red, to dark purple.It could be on spots , or on well-seen red figures- different variants exist.When the patch becomes dark purple, it means that this individuals is about 30-40 hours away from death.

We consider that the SEB is a reason for destruction of personality, the reason makes people live in disharmony with themselves and with society.

How could Homo Spiens be infected with the SEB f.virus?

By receiving improper emotional value,quarrel in a bus, short negative telefone conversation, scolding a child for breaking by accident the Christmas toy, not keeping the right of way on a crossroad, watching a conflicting T.V. show - in short experiencing negative feeling. (1)

The very act of infecting is a mental action, armed at hurting someone.In such a way an individual,or the society as a whole could be infected.Each person is in constant contact with other.Even the mere presence without talking, or seeing is a form of contact.

Long time ago the man had invented the mental weapon, but still there is no vaccine, or some kind of defence against the negative impact, that only humans are able to inflict upon each other.That is why when we are hurting others, we are hurt ing also ourselves.

After the f.virus gets in the limbic system it may be inactive for a period of time - sometimes it may take years before it strikes the host.An egological contamination of the planet is being created.

It has been observed, that in infants, the patch dissapears after a proper drug treatmentand parents care.There are adults with a well visible path, their body is fightingto reach the necessary balance.

A man is a buld in such a way, that from the day he was born till his last day he fights with the debalancing cataclysms.All the known pharmakopea exist in the human body - it is a system by itselfs. The patch is like a screen that reflects one's health status.

Unfortunately,still the drug or the vaccine to fight the SEB is not invented. There is a danger to human health when the SEB becomes host's essence. The f.virus contaminates the emotional assessment,which like a ruffled mirror reflects the incoming emotional values feelings like agression,envy,hatread, jealousy,indifference,addictional to alkohol, drugs,gambling,lonelines and pathology like diabetes,AIDS,cancer,cirrhosis, etc - the list could be quite long.There are different medical brands,fighting to balance the existing total disbalance.

For better clarity in determing the degree of contamination the following levels of SEB are distinguished:

Level 1Humans,trying to get into conflict at first opportunity, or that are impartial to the suffiring of the surrounding people.The most typical feelings of these people are agression, hatred,jealiusy, greediness.The patch is light pink in colour,small in siza, andvery dangerous to to the host himself and to the surrounding.Family quarrels, cold blooded and cruel murders, divorces, etc. are due to the fighting hormons in the blood and cells of the host.We observe these people not as defendants,but as victims.Of course according to the law, everybody is responsible for his own actions.The people at 1-st level are most dangerous for themselves, and for the society as a whole.Their live is subjected to this plague of 21-st centuary.

Level 2- This level is causing the world economic crisis!People that are infected with Level 2 cannot make a reightful assessment of the necessity of the investments for the benefit of the society.If we appoint a Level 2 infected person at leading position at a financial structure,the collaps of the institutiun is immienent. This condition is known as business destroyer.These are people that cannot distinguish between a friendly and enemy hand.Such people have difficulty finding a job, and cannot find their place in prosperous structures, if ultimately they get into such structures, it is for a very short time - 2 - 3 months.The patch is like drops of spray - small, red and very dangerous for the host's business.Such person is better not be an entrepreneur.

Level 3This is the level of the addicted to drugs, alcohol, tobacco, gambling, etc.These people think that being healthy or not is out of theirmanageability. Is there an alcoholic that considers that alcohol is dangerous to his health? Is there a gambler who does not belive that with the next bid he will get back the lost money, of not today, then tomorrow? The patch is red and big.It is very difficult to get out of this level, and it will long time.Large part of the body is contaminated, and this could be overcome only with relevant therapy and will.

Level 4This is level of chronic diseases like diabetes, cancer high blood pressure, apathy, depression, psoriasis, etc. The patch is very big and pink to purple in colour.People at this level are better strict to medecines an diets, known to the traditional medicine.

Level 5Level 5 is litle known, because there is no coming back.The patch is big purple - a warning that death is knocking on the door. Mothers had observed such patch at the back of their children that commited sucide.The patch dissapears 12 hours after death.

It is possible to suffer from chronic illness, without having SEB.It is possible to live the whole live without SEB.The patch is like a screen of the health status that warns, that if body could not cope by itself, it will need appropriate intervention - medical, egological or surgical.Many people live having the patch, but SEB had not turned to be their essence.

When SEB controls the man?

When the emotional perception is constantly distrubed.In a strong way the f.virus modifies the incoming emotional values.It is known, that when the SEB f.virus settles in the limbic system of the Homo Sapiens, it transforms the impulses to the pituitary. In the limbic system are built chains of neurous lymbic ways.Some of them by means of the talamic cores end in the cortex.In such a way the impulses coming from the limbic system are integrated into the nervous system.

Other ways end in the hypotalamic cores.Through the cores the functional influence is transmitted to the cores the functional influience is transmitted to the pituitary gland and to the entire endocrine system. Trough these ways an influence is effected also on the vegetative visceromotor cores.Thus the activity of the limbic system is interconnected with the endocrine orgnas, locomotive organs, the heart. They participate in the emotional behavoir of the individual.

The endocrine glands produce one ore several hormones.By means of blood flow these hormones reach all parts of the body, but effect influence only on some of them. A regulation of the function of the body is effected by means organic substances dispersed in body liquids. The endocrine glands excrete secretion in the blood.They are in close functional connection with the nervons system.When the improper emotional value enters the individual trough the way known to medicine, it is lead to the pituitary gland. The latter signals the the relevant endocrine gland, and in case the individual is contaminated by SEB, a hormonal ingredient is being created, which is of no need to the body in this particular moment.This hormonal substance jams the mitochondrias in the cells with parahormonal substance.

Thus the cell changes its mass.It cannot breathe and capsules itself, and cannot function properly. If this cell happens to be a nevron, pathologic change in the brain could occur, as a result of SEB. By this very mechanism excess quantities enter into mitochondrias of the muscle fibres, the structure of the cells of the locomotive apparatus changes, the structure of the host organs changes.

The foundations of the science called Egology, the studies and fights the SEB for more 24 years,are laid in Bulgaria.In a center Egology, for more 24 years the inflience of SEB is being ignored, more nine thousand photos are made to visualise the SEB. The cell mass of thousands of people is regenerated under a strict medical supervision. For the purpose of visualisation and indirect attack to ignore the SEB special test are created, that shows its avalibility in a person.Exist SEB-idirect neutrlalizators,Neutralizators are created that in an unexplainable way collect within themselves inorganic substances. The neutralizators like from the man the egological contamination.They change their colour without changing its structures.In the web seite egology by you can find filmed opinions thousands of patients that recover their health status after the SEB had been removed from them.In theses cases the SEB red patch fades.

The test are personal and for single use.They discover faultlessly the contamination,thus warning the individual.Exist also products, that help to balance the emotional status- internet side http://egologia.bg.

best regards

Juriy PeykovSofia

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DATE:  February 22, 2012

SUBJECT:  Comment on draft plan-research

The document is very well written and comprehensive, but I am concerned that it does not yet insure sufficient diversity in ideas for research funding. The majority of investigators, including most of the "top dogs" remain single mindedly focused on amyloid-centric therapeutic targets leaving little room for expansion into other areas. Rather than relying on an annual consensus meeting in which I expect the loudest and most dominant voices to prevail (again), it might instead be more effective to explicitly state that several promising areas will be encouraged for funding. Further thought might even be given up front to defining those areas (including a miscellaneous category to anticipate unexpected possibilities) and quantifying the funds allocated to each (e.g., 50% for basic science/50% for clinical research; among the basic science 50% for amyloid related work, 30% for tau related work, 15% for apoe and 5% miscellaneous; among the clinical research, 60% for clinical rials and 40% for original investigations). Something like that...and then consensus panels could be created within each subgroup. In my opinion the greatest threat to AD research is not the total dollars but how they end up being allocated. This would address the allocation concern.

Richard J. Caselli, M.D.

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DATE:  February 22, 2012

SUBJECT:  Draft National Plan to Address Alzheimer's Disease and Related Dementias - Public Comment

Thank you for the opportunity to comment on the Draft National Plan to Address Alzheimer's Disease and Related Dementias. I am glad to see some immediate increased funding for AD and the call for a research summit. I would hope to see increased emphasis on geriatric workforce development and caregiver support with more specific language (i.e. scholarship loan paybacks, exemption of geriatric training from residency caps, Medicare and State Medicaid caregiver support and respite programs).

Best wishes,

James S. Powers MDAssociate Professor of MedicineVanderbilt University Medical Center

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DATE:  February 22, 2012

SUBJECT:  Michael Ellenbogen's comments on draft National Plan to fight Alzheimer's Disease

First of all I would like to thank you all for the progress that has been made on this important development in the war against Alzheimer's. While I cannot say I am happy, I do feel better with some of the wording in goal number 1.

I strongly recommend that you find it in your hearts and guts to make the statement even stronger. Let's change that date to 2020 and show some urgency in the matter. Too many people are dying. The way they die is not a pretty site and no family should ever have to see this first hand. If I could only share some of the horror stories I have read, it scared me to death that my family may have to endure that with me. I do not want to become a burden on my family, society or even the healthcare system.

Something that has not been mentioned in this report and should also be considered is for the right to die sooner with the help of doctors. When I get to the point that my brain is no longer functioning, I want to be put out of my misery. I want to go out with dignity and be remembered for the good things I have done and not what I will be come soon. I also want my family to remember me that way, not in my pains and suffering along with their frustrations of dealing with me. I know this is a tough subject to speak about, but we all are adults and need to keep an open mind. This decision would benefit so many not only emotionally, but financially.

As far as the extra money being allocated to this, I would say we are still falling very short. HIV receives so much more in funding then Alzheimer's. Yet there are more people living with Alzheimer. Where is the justice in all this? Does this make any sense at all? While we have made some funding progress, do not fool yourself. We need to do a lot more now, even if it means to move some of the other funding from other diseases to this category. All because Alzheimer's patients can no longer speak, write or have died off, is no excuse to not look out for them.

Please, Please make Alzheimer's end with me.

Thank you,

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money"http://www.michaelellenbogen.com

P.S. I would love to be a part of the committee to represent Alzheimer's patients.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 22, 2012

SUBJECT:  Comments

First, let me thank you for the efforts and work toward the National Plan to Address Alzheimer's Disease. At the Rosalynn Carter Institute for Caregiving, we have worked many years to support caregivers caring for loved ones living with this disease. The first deadline for public comments on the draft has passed. Can you share with me if there will be another opportunity to submit written comments? We, at the Institute, would like the opportunity to do so.

Thanks,

Leisa Easom, PhD, RNExecutive DirectorRosalynn Carter Institute for CaregivingGeorgia Southwestern State University Americus, GA

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DATE:  February 18, 2012

SUBJECT:  National Plan to Address Alzheimer's Disease

I realize I am late with my comments. First, as a Fellow of the American Psychological Association, I endorse and support their comments and recommendations.

Second, caregiver needs and the excellent support available through appropriately selected technologies needs to be much more emphasized. My colleagues in psychology and rehabilitation medicine have done a good deal of research in this area.

From wheelchairs to hearing aids, assistive technology has long been a staple of caring for the elderly with disabilities. Additionally, and depending on individual needs and preferences, those with Alzheimer's disease can potentially benefit from a blend of personal assistance; strategies; everyday technologies (ie, wristwatch, SmartPhone); and specialized technologies (e-pill alarm watch). Which combination is most appropriate for an individual requires an early and comprehensive assessment. For example, an Apple iPhone has many helpful features for individuals with cognitive disability and specialized applications can be obtained, but the phone has a small screen, small keys, and the complexity may make it less useful for some with Alzheimer's disease, especially those who have poor motor control and poor eyesight. An alternative is the Jitterbug® phone (http://www.greatcall.com), which has a simpler interface, large keypad with yes/no action buttons (ie, no confusing icons), and a speaker with an ear pad that is also compatible with hearing aids. Many other examples of products are given in my new book, Assistive Technologies and Other Supports for People With Brain Impairments [http://www.springerpub.com/product/9780826106452]. I discuss an array of assistive and cognitive support technologies, advise methods of implementation using real-life situations, and provide other resources for long-term care providers, caregivers, and families of those with Alzheimer's disease. I also extensively review research in this area by me and my colleagues.

I do hope you will give the promise of cognitive support technologies much more attention in your forthcoming National Plan.

Respectfully submitted,

Marcia J. Scherer, PhD, MPH, FACRMPresidentInstitute for Matching Person & TechnologyWebster, NYhttp://matchingpersonandtechnology.com

Editor, Disability and Rehabilitation: Assistive Technologyhttp://www.informahealthcare.com/idt

Professor of Physical Medicine and RehabilitationUniversity of Rochester Medical CenterRochester, NYhttp://www.urmc.rochester.edu/web/index.cfm?event=doctor.profile.show&person_id=1001471

Co-PI, Center on Effective Rehabilitation Technology (CERT)Burton Blatt Institute, Syracuse Universityhttp://bbi.syr.edu/projects/cert/cert.htm

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DATE:  February 18, 2012

SUBJECT:  National Alzheimer's project

Hi, Is it too late for public comment for this project?

Nancy E. Richeson, Ph.D. CTRSProfessor University of Southern MainePortland, ME

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DATE:  February 16, 2012

SUBJECT:  National Task Group Document - input to NAPA process

Just wanted to check this through with you. We know we 'informally' presented our National Task Group in Intellectual Disabilities and Dementia Practices' national report and plan to the Council at its meeting on January 17th, but were concerned that perhaps it was not a formal submission and thus may not warrant distribution to the Council and our intent not recognized in official comments submitted to the Council and the NAPA DHHS team.

If that is the case, please accept this submission (with the NTG report attached) as our 'official' submission to the NAPA process. Our cover note accompanying the dissemination of the document is provided below.

Thanks for your help with our effort -- it is much appreciated.

Dr. Matthew P. JanickiRockport, ME

==========

National Plan on Dementia and Adults with Intellectual Disabilities

The National Task Group on Intellectual Disabilities and Dementia Practices has issued a plan for improving the community care of adults with intellectual disabilities affected by dementia. "This is an issue that will only grow in intensity and the nation needs to address this challenge head on" said Dr. Seth M. Keller, the President of the American Academy on Developmental Medicine and Dentistry and co-chair of the National Task Group. The Group's report, "'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports", summarizes and addresses some of the challenges facing the nation due to the increasing rate of dementia found in older people with intellectual disabilities.

The report offers recommendations for the improvement of services and suggests that its findings and recommendations be considered and integrated into the reports and plans being developed by the federal Advisory Council on Alzheimer's Research, Care, and Services -- under the National Alzheimer's Project Act. The report notes that Alzheimer's disease mostly impacts adults with lifelong intellectual disabilities in the same ways as it does other people, but sometimes has a more profound effect due to particular risk factors - including genetics, neurological injury, and deprivation.

Dr. Keller said that "families are often the main caregivers for adults with an intellectual disability and when Alzheimer's occurs they are profoundly impacted." Such families not only include parents, but also siblings and other relatives. The report notes that many such families have difficulties in providing extensive care at home once dementia becomes pronounced and care demands overwhelm them.

The report also notes that it is important to recognize signs of dementia-related changes early, and identified an instrument potentially applicable to adults with an intellectual disability. This instrument could also be used for the cognitive assessment provision of the annual wellness visit under the Affordable Care Act. The report recommends adoption of such an instrument by providers and regulatory authorities to identify those adults at-risk due to early signs of mild cognitive impairment or dementia.

Dr. Matthew P. Janicki, of the University of Illinois at Chicago, the other co-chair, said that "generally there is little information on this issue and much needs to be done to make people more aware of it." He noted that the Group recommended an intensified community education effort to enhance the capabilities of staff, clinicians, community providers, and administrators. Further, education is needed to raise awareness of dementia and how it affects adults with an intellectual disability among families and other caregivers.

The report notes that dementia has a devastating impact on all people -- including people with an intellectual disability and their friends, families and the staff who may be involved with them as advocates and caregivers. The National Task Group wants its report to contribute to the work of the federal Advisory Council on Alzheimer's Research, Care, and Services. Plans are also in place to produce educational materials, develop guidelines for care, and hold training sessions across the country.

The report and its 'Action Plan' are available at these websites: http://www.aadmd.org/ntg and http://www.rrtcadd.org.

Co-Chairs:

Seth M. Keller, MDPresidentAmerican Academy of Developmental Medicine and Dentistry

Matthew P. Janicki, Ph.D.University of Illinois at Chicago(RRTC on Aging with Developmental Disabilities -- Lifespan Health and Function)

ATTACHMENT:   NTG_Thinker_Report_FINAL.pdf

Available as separate links:
'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports‘My Thinker’s Not Working’: A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 15, 2012

SUBJECT:  Fwd: Simple Way To Stop Alzheimer's

If you care to view my YouTube video (see PEERS ALZHEIMER), you will quickly see how to end America's Alzheimer crisis. I hope to publish my completed hypothesis--implicating refined polyunsaturated vegetable oils--sometime this year.

I have been working on this disease since 1990, but could not work out a key link in the chain of causation, until helped by Wisconsin neuroscientist Dr Deng-Shun Wang, just last year.

It's Goodbye Alzheimer's at last!!

Best Wishes,

Dr Robert Peers, MBBS (Unimelb)General, Preventive & Nutritional Medical PractitionerNorth Carlton, Vic., Australia

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DATE:  February 13, 2012

SUBJECT:  Comment

I support Assisted living!!!

Raymond Wright

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DATE:  February 12, 2012

SUBJECT:  Holistic Approach to Alzheimer's Care

I received a notice that your organization will be evaluating ideas from Alzheimer's caregivers. I would be greatly honored to provide some ideas on my holistic Assisted Living Practice, which has been successful in stablelizing both, Alzheimer's and Dementia conditions in a short time frame. We work closely with the resident's MD and their prescribed medications at the beginning, then we immerse the resident in a completely holistic diet, where their medications are much more effective and over a short period (2-3 weeks), the resident's medications can be reduced, therefore, improving their alertness and ability to maintain their independence in many of their daily activities.

Feel free to contact me if you should wish to discuss our program. I am working on a book at this time and will be sharing very helpful cases and our holistic approach within a peaceful residential environment.

Best regards,

Ingrid MendezMy Country Home, Inc.http://mycountryhomeinc.com

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DATE:  February 11, 2012

SUBJECT:  Terapie non farmacologiche: corso di formazione "Terapia della Bambola" (Alzheimer, Autismo, ...)

Il prossimo corso si terrà a

Milanosabato5 maggio 2012presso la Fondazione"DON CARLO GNOCCHI ONLUS"Via Capecelatro 66Milano

Richiesta accreditamentoECMFigure professionali:Psicologi, Infermieri,Fisioterapisti, Educatori

LA TERAPIA DELLA BAMBOLACorso di formazione

Corso di formazione "LA TERAPIA DELLA BAMBOLA" destinato a:

  • Medici
  • Psicologi
  • Educatori
  • Operatori socio assistenziali
  • Infermieri
  • Fisioterapisti
  • ... e tutti i professionisti che si occupano di relazione d'aiuto.

Si tratta di un percorso formativo di 8 ore sulle modalità e tecniche di inserimento/applicazione della Terapia della bambola.

Sono previsti approfondimenti riguardanti le terapie non farmacologiche e le loro modalità all'interno dei percorsi di cura.

Il percorso formativo si propone diversi obiettivi:

  • Ottimizzare le sinergie tra i diversi interventi terapeutici
  • Gestire le problematiche comportamentali con la bambola terapia
  • Favorire attraverso l'utilizzo della terapia della bambola gli interventi assistenziali e terapeutici
  • Migliorare l'efficacia degli interventi sull'utenza.

Documentazione:Durante il corso verrà rilasciata ai partecipanti la documentazione riguardante i protocolli sulla metodologia e modalità applicative della terapia della bambola. Ai partecipanti verrà rilasciato un attestato di partecipazione al corso.

Vi suggeriamo di visitare il sito www.ivocilesi.it per ulteriori dettagli sul corso. Alleghiamo la locandina del corso ed il modulo di iscrizione.

Dr. Ivo Cilesi - Psicoterapeuta Psicopedagogista

Per informazioni:www.ivocilesi.itinfo@ivocilesi.it Tel. 035-760400

ATTACHMENT:   Locandina_corsi_2012.pdf   Modulo_iscrizione_2012.pdf

Available as separate links:
Corso di Formazione -- La Terapia Della BambolaModalità di inserimento, di applicazione e di valutazione all’interno di percorsi terapeutici
Scheda di iscrizione al corso -- La Terapia Della BambolaScheda di iscrizione al corso LA TERAPIA DELLA BAMBOLA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2012

SUBJECT:  Author, Radio Host, Speaker: Alzheimer's

Hello, I wish to be involved in NAPA. I was a television executive, but I barely survived as a caregiver to my (once-adoring) obstinate elderly father and sweet but ailing mother, both with Alzheimer's which went undiagnosed for over a year. But after fighting through the medical system, endless tears, and depleting my parents' life savings and much of my own--I finally figured everything out medically, behaviorally, socially, legally, financially and emotionally. Passion to save others (especially from getting so frustrated they commit elder abuse) resulted in my first book, ELDER RAGE, a Book-of-the-Month Club selection, launching the COPING WITH CAREGIVING radio show, and becoming an INTERNATIONAL SPEAKER (CEU/CMEs) on Alzheimer's. I am compelled to educated on issues that so unnecessarily cost years of my life--and then nearly my life itself when I survived invasive Brst. Cancer. (Please let me know you received this.)

Jacqueline MarcellAuthor, Radio Host, Speaker"Elder Rage, or Take My Father... Please! How to Survive Caring for Aging Parents"Coping with Caregiving Radio ShowIrvine, CAhttp://www.ElderRage.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2012

SUBJECT:  Comment

Attached please find letter from each of our respective department heads here at Shrewsbury Crossings (Benchmark Senior Living) pertaining to the passage of the National Alzheimer's Project Act.

Please feel free to contact me at 508-845-2100 with any additional questions.

Regards,

Jeff KingsburyDirector of Business Administration

ATTACHMENT:   DOC020912-0001.pdf   DOC020912-0002.pdf   DOC020912-0003.pdf   DOC020912-0004.pdf   DOC020912-0005.pdf   DOC020912-0006.pdf   DOC020912-0007.pdf   DOC020912-0008.pdf

Available as separate links:
Draft National Plan to Address Alzheimer's Disease: Comments from Ed WinDraft of the National Plan to Address Alzheimer's Disease
Draft National Plan to Address Alzheimer's Disease: Comments from Jeff KingsburyDraft of the National Plan to Address Alzheimer's Disease
Draft National Plan to Address Alzheimer's Disease: Comments from Karen CorcoranDraft of the National Plan to Address Alzheimer's Disease
Draft National Plan to Address Alzheimer's Disease: Comments from Marisa RossettiDraft of the National Plan to Address Alzheimer's Disease
Draft National Plan to Address Alzheimer's Disease: Comments from Maria SandsDraft of the National Plan to Address Alzheimer's Disease
Draft National Plan to Address Alzheimer's Disease: Comments from Peter DonatyDraft of the National Plan to Address Alzheimer's Disease
Draft National Plan to Address Alzheimer's Disease: Comments from Diane EvansDraft of the National Plan to Address Alzheimer's Disease
Draft National Plan to Address Alzheimer's Disease: Comments from Michael BavusoDraft of the National Plan to Address Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2012

SUBJECT:  Comment

I am a family caregiver to a person with Alzheimer's Disease. I was fortunate to receive supportive services through the ADSSP program via the Family Memory Care Program. This help made a significant difference in my ability to care for my spouse.

I understand that funds for this important service have been cut. With the aging of the baby boomers we need to add more services to support people with Alzheimer's disease and their caregivers. I urge you to encourage the federal government to restore and sustain this crucial program. It does so much to help families like mine. I would be lost without this help.

Sincerely,

Kathleen Rejeena Peterson

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  FW: Request for TODAY

I am a family caregiver to a person with Alzheimer's Disease. I was fortunate to receive supportive services through the ADSSP program via the Family Memory Care Program. This program has helped make a significant difference in my ability to care for my loved one.

I understand that funds for this important service have been cut. With the aging of the baby boomers we need to add more services to support people with Alzheimer's disease and their caregivers. I urge you to encourage the federal government to restore and sustain this crucial program. It does so much to help families like mine.

Sincerely,

Shirley Spearin

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  I have appreciated the support of NAPA

I am a family caregiver to a person with Alzheimer's Disease. I was very fortunate to receive supportive services through the ADSSP, program via the Family Memory Care Program. The program has helped make a significant difference in my ability to care for my loved one. This program has not only helped me with the care of my wife. It has helped to sustain me through this difficult time.

I understand that funds for this important service have been cut. With the aging of the baby boomers we need to add more services to support people with Alzheimer's disease and their caregivers. I urge you to encourage federal government to restore and sustain this crucial program. It does so much to help families like mine.

Sincerely,

Ernie StrandbergCarlton, MN

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  Draft Framework Input

CARIE previously submitted comments about the importance of including unbefriended elderly with Alzheimer's disease in the National Plan. Even though they do not have a voice and are often hidden in communities throughout the country, the needs of these individuals should not be overlooked. Please consider adding this population to Strategy 2.G: Improve Care for Populations Disproportionally Affected by Alzheimer's Disease. The unbefriended elderly are clearly disproportionately affected by Alzheimer's disease and should not be overlooked as this epidemic grows. Should you need any additional information, please contact me. Thank you in advance for your consideration to this recommendation.

Kathy CubitCenter for Advocacy for the Rights and Interests of the Elderly (CARIE)Director of Advocacy InitiativesPhiladelphia, PA http://www.carie.orghttp://www.caregivergps.org

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  Elimination of the ADSSP program

I am working with a group of African American caregivers who are caring for a family member with Alzheimer's disease. The cuts to the ADSSP program are devastating now. and will be even more challenging as further cuts are proposed. At our support group we discussed the challenges ahead and also, decided to write to let you know that our lives will be negatively impacted by the decision to take funds from the ADSSP program, which provides educational and supportive services for caregivers.

==========

I am a family caregiver to a person with Alzheimer's disease. I was fortunate to receive supportive services through the ADSSP program. This help made a significant difference in my ability to care for my family member.

I understand that funds for this important service have been cut. As an African American person, I am especially concerned about the increase risk for Alzheimer's disease in the minority population. African Americans are at greater risk due to health factors such as; high blood pressure, high cholesterol and diabetes. In addition, with the aging of the baby boomers we need to add more services to support people with Alzheimer's disease and their caregivers. I urge you to encourage the federal government to restore and sustain this crucial program. It does so much to help families like ours.

Lill Guardian Angels African American Support Group
Support group members/CaregiverCaring for person with Alzheimer's disease
Juanita WilliamsPaulette JacksonGertha CochranLatietia McLaughlinLinda GreenDiane AndersonValorie BrownErma BlandFreddie Mae OwensHenretta CarterAnna MajorsOlivia MorrisonSandy HarpHusbandDadMotherDadMotherHusbandUncleHusbandHusbandHusbandMother-in lawHusbandNeighborhood

Dorothea Harris, LGSWFamily Memory Care ConsultantVolunteers of America MNSenior ServicesMpls., MNhttp://www.voamn.org/Family-Memory-Care

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  Pioneer Network Comments on the Draft National Alzheimer's Plan Framework

Thank you very much for the opportunity to provide comments on the Draft National Alzheimer's Plan Framework. Comments from the Pioneer Network are attached to this email.

Best Regards,

Peter Reed, PhD, MPHChief Executive OfficerPioneer NetworkChicago, IL

ATTACHMENT:   Pioneer Network Comments on Draft National Alzheimer's Plan 2-8-2012.pdf

Available as separate links:
Comments on the Draft Framework for the National Plan to Address Alzheimer's Disease, submitted to the HHS Advisory Council on Alzheimer's Research, Care, and ServicesPioneer Network - RE: Comments on the Draft Framework for the National Plan to Address Alzheimer's Disease, submitted to the HHS Advisory Council on Alzheimer’s Research, Care, and Services

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  Comment

I am a family caregiver to a person with Alzheimer's Disease. I was fortunate to receive supportive services through the ADSSP program via the Family Memory Care Program. This help made a significant difference in my ability to care for my spouse.

I understand that funds for this important service have been cut. With the aging of the baby boomers we need to add more services to support people with Alzheimer's disease and their caregivers. I urge you to encourage the federal government to restore and sustain this crucial program. It does so much to help families like mine.

Sincerely,

Marilyn Hagen

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  DRAFT Framework for the National Plan to Address Alzheimer's disease

Thank you for the opportunity to provide comments on the DRAFT Framework for the National Plan to Address Alzheimer's Disease.

The Virginia Assisted Living Association (VALA), representing assisted living providers from throughout Virginia, as well as thousands of residents and employees served by these providers, supported the passage of the National Alzheimer's Project Act. We strongly support the goals outlined in the Draft Framework, but we are disappointed in the lack of acknowledgement of the importance of and the extensive use of assisted living services for individuals with Alzheimer's disease.

Assisted living is long-term care service provider, that offers a more affordable home and community based alternative to skilled nursing care. Assisted living providers focus on the resident and offer services that are unique to the individual needs of the residents to allow for individual choice and help residents maintain dignity and respect. Assisted living is a professionally managed, community-based option for seniors and disabled individuals to use when needing assistance with activities of daily living, including specialized care for individuals with memory loss.

Statistics will show that consumers prefer assisted living care over institutionalized care settings, which is directly contributing to the drastic increase in the population numbers of assisted living communities. As reported in the 2009 Overview of Assisted Living (research conducted and analyzed by Acclaro Growth Partners), more than 1/3 of all residents living in assisted living communities have a diagnosis of Alzheimer's or a related dementia. The US Government has evidence of this in its release of the 2010 National Survey of Residential Care Facilities as conducted by the CDC's National Center for Health Statistics, which stated that 42% of the residents living in residential care have Alzheimer's disease. This number is expected to continue or even increase as the levels of care and the options of care continue to expand within assisted living communities for memory impaired residents.

We respectfully request HHS to acknowledge and to include assisted living as a viable option when educating and caring for individuals with Alzheimer's and their families. We also request that the word "patient" be replaced with the word "individual". Below is listing of some of our recommendations of changes to the Draft Framework...

  • Goal 2. Add licensed assisted living communities to the list of settings in the opening paragraph after "hospitals"
  • Strategy 2.A Change patients to individuals
  • Strategy 2.B Change patients to individuals
  • Strategy 2.C Change patients in the title to individuals
  • Strategy 2.E Add assisted living and a transition options from the home to assisted living and from hospitals to assisted living
  • Strategy 2.E Change patients to individuals and add assisted living to the list of transition settings after "home"
  • Goal 3: Change the title to Expand Support of Individuals with Alzheimer's and their Families, and add assisted living to the list of care settings after "hospitals"
  • Strategy 3.B Add assisted living before "nursing home placement" in both references
  • Strategy 3.D The use of the term "residential care facilities" in the first sentence is odd because that term has never been used throughout the document. A more consistent term could be "long term care settings". In two places the term "assisted living facilities" is used and the term "facilities" should be replaced with "communities". This strategy should be strengthened to support a zero tolerance for abuse of individual's with Alzheimer's, regardless of where they live. Criminal background checks, educating family members, residents and staff in how to recognize, respond and report suspected abuse and termination of staff when appropriate must be a top priority.

Thank you for your time and consideration of these comments, and please contact me should I be able to offer you assistance in this ongoing Plan.

Cordially,

Judy M. HacklerExecutive DirectorVirginia Assisted Living Association (VALA)Henrico, VAhttp://vala.alfa.org

ATTACHMENT:   HHS Letter Regarding Alzheimers - 2012-02.pdf

Available as separate links:
DRAFT Framework for the National Plan to Address Alzheimer's diseaseVirginia Assisted Living Association - Re: DRAFT Framework for the National Plan to Address Alzheimer’s disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  Feedback on the Draft Framework for the National Plan on AD

Please find attached feedback from the Lewy Body Dementia Association on the Draft Framework for the National Plan to Address Alzheimer's Disease. The letter is from the President of LBDA's Board of Directors, Angela Herron, in consultation with our Scientific Advisory Council.

I have also copied the text itself below for your convenience in including it on the NAPA website.

Please feel free to contact me with any questions.

Sincerely,

Angela TaylorDirector of ProgramsLewy Body Dementia AssociationLilburn, GAhttp://www.lbda.org

An Open Letter to the U.S. Department of Health and Human ServicesFeedback on the Draft Framework for theNational Plan to Address Alzheimer's Disease

The Lewy Body Dementia Association (LBDA) supports and applauds the development of a national plan to address Alzheimer's disease and related disorders.

With appreciation for the magnitude of the task at hand and the complexity of the issues, LBDA is providing limited feedback that is a) relevant for dementia in general and b) an important consideration specific to the spectrum of Lewy body dementias (LBD): dementia with Lewy bodies (DLB) and Parkinson's disease dementia (PDD).

An estimated 1.3 million Americans have LBD, which features progressive dementia plus varying combinations of symptoms (especially at onset), ranging from parkinsonism, fluctuating cognition and visual hallucinations, to REM sleep behavior disorder, a severe sensitivity to antipsychotic medications, mood disorders and autonomic dysfunction. Both clinical diagnoses within the LBD spectrum feature Lewy body pathology, but the timing and severity of symptom onset differs.

Dementia with Lewy bodies represents approximately 20 percent of all dementias and is the most frequent dementia type misdiagnosed clinically, most often as Alzheimer's. Features that differentiate LBD from Alzheimer's at the early stage include visual hallucinations, REM sleep behavior disorder and results of neuropsychological assessment.

Most older adults with Parkinson's disease have some degree of cognitive impairment at the time of diagnosis. Approximately 80% of people with Parkinson's will ultimately develop dementia. The prevalence of cognitive impairment and dementia in Parkinson's disease has not yet become common knowledge among clinicians. There is no general public awareness about dementia in Parkinson's disease. Caregivers of people with PDD report to LBDA that the progression to dementia ultimately proves to be their most difficult caregiving challenge.

It's not always Alzheimer's.

We appreciate the importance of communicating the plan in a manner that is both straightforward and understandable by the general public. While Alzheimer's disease is the most common form of dementia, there are millions of Americans whose lives are deeply affected by related disorders like stroke, LBD and frontotemporal degeneration; while they receive nominal mention in the background material as being included in this plan, there is no mention of them in the draft agenda.

Public awareness and education is one of the core goals of the draft agenda. LBDA urges the names of related disorders be included in the opening statement of the draft agenda, so that educating the public about the most common forms of dementia begins now and continues throughout the advancement of the National Plan to Address Alzheimer's Disease, through public relations efforts of federal agencies, disease advocacy organizations and academia.

As the plan receives coverage in the media, deliberate inclusion of related disorders will also minimize disenfranchisement of Americans affected by lesser-known, non-Alzheimer's dementias like LBD, many of whom might easily infer the omission indicates the federal government does not appreciate that their plight is as fraught with burden as those dealing with Alzheimer's disease.

Diagnosis

While improving the timeliness of diagnosis is important, the Lewy Body Dementia Association strongly recommends the inclusion of the word 'differential' when referring to diagnosis.

A general dementia diagnosis or an inaccurate diagnosis of Alzheimer's disease leaves people with LBD at risk for exposure to potentially severe or irreversible medication side effects. (Approximately 50% of people with DLB who are exposed to neuroleptics will experience a severe reaction.) Inaccurate diagnosis also prevents the opportunity to prepare families for the complexity of LBD symptoms, treatment and high toll of LBD caregiving. Accurate differential diagnosis not only leads to more appropriate therapeutic interventions but also improves the selection for study candidates in research trials.

Primary care physicians must become more familiar with the top four causes of dementia, specifically Alzheimer's, LBD, stroke and frontotemporal degeneration. Delayed or inaccurate diagnoses are further compounded by the low percentage of referrals from primary care physicians to specialists. Simple screening tools to highlight when a referral is warranted for differential diagnosis are urgently needed, especially for people with LBD.

Care Quality

When assessing the care needs of persons with dementia, it is essential to look beyond the cognitive deficits and their impact on employment, incidental activities of daily living and activities of daily living. In the case of Lewy body dementias, care quality must also address motor symptoms (such as the risk of falls), behavioral problems, sleep and autonomic issues. Other professionals who regularly provide care for people with dementia include specialists treating sleep and autonomic symptoms as well as physical, occupational and speech therapists.

Care Guidelines across Care Settings

Given the increased rate of hospitalization of people with dementia, hospitals should be included in the list of care settings for which dementia care guidelines and measures are to be developed. Many hospitals are not equipped to provide adequate care to people with dementia, especially those with behavioral problems, leading to excessive or avoidable treatment with antipsychotic medications. (This is especially dangerous to the person with LBD, who may experience modest to significant decline without a return to their baseline from as little as a single dose of haloperidol.) Additionally, consideration should be given to non-cognitive symptoms, such as motor problems, which affect activities of daily living and increase fall risk.

As LBD is a multi-system disorder, routine care coordination between multiple physicians is particularly challenging with LBD. By changing medications without consulting the treating neurologist, another physician may unknowingly exacerbate any one of several LBD symptoms.

Patient and Family Support

In addressing the long term care needs of people with dementia, caregivers need more accessible resources to provide quality care for the person with dementia in their own home as long as possible, while also maintaining balance of the equally important quality of life for the family caregiver.

Patient advocacy groups should be included in the draft framework as an important source of counseling, support and information to patients and families upon a differential diagnosis.

Public Awareness

The general public needs to be educated about the difference between dementia and the disease processes that cause it, much like the education the public received about HIV and AIDS. Few people understand that dementia is sometimes treatable. Educating the public that dementia is a symptom requiring medical attention, not a disease in itself, will help de-stigmatize both dementia and the many related clinical diagnoses.

In order to improve the reporting to physicians of all dementia-related symptoms beyond memory problems alone, such as those seen in stroke and LBD, it is imperative that the general public learn that the most common causes of dementia are Alzheimer's disease, stroke and LBD, and what symptoms should be reported to their physicians.

The Lewy Body Dementia Association is encouraged at the expansive nature of this draft agenda, especially as it pertains to the impact of dementia disorders not just on the patient but on the family caregiver as well. We look forward to following the progression of your work with great anticipation.

ATTACHMENT:   LBDA reply to NAPA framework 2012 0208.pdf

Available as separate links:
An Open Letter to the U.S. Department of Health and Human Services -- Feedback on the Draft Framework for the National Plan to Address Alzheimer's DiseaseLewy Body Dementia Association, Inc. - An Open Letter to the U.S. Department of Health and Human Services: Feedback on the Draft Framework for the National Plan to Address Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  LEAD Comments on Draft Framework

Attached please find comments on the Draft Framework for the National Plan to Address Alzheimer's Disease from Leaders Engaged on Alzheimer's Disease (LEAD). Also attached are the comments collected from researchers on behalf of LEAD's Research Workgroup to be submitted for your consideration. Please contact me with any questions you may have.

Thank you,

Patrick FritzProject ManagerLeaders Engaged on Alzheimer's Disease (LEAD)

ATTACHMENT:   LEAD Framework Comments vf.pdf   Research Workgroup Recommendations vf.pdf

Available as separate links:
Draft Framework for the National Plan to Address Alzheimer's Disease CommentsDraft Framework for the National Plan to Address Alzheimer's Disease
Research Workgroup Suggested RecommendationsResearch Workgroup Suggested Recommendations

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  Alzheimer's Association Comments on the Draft Framework for the National Plan to Address Alzheimer's Disease

On behalf of the Alzheimer's Association, the leading voluntary health organization in Alzheimer's care, support and research, thank you for the opportunity to comment on the U.S. Department of Health and Human Services "Draft Framework for the National Plan to Address Alzheimer's Disease." Please let us know if you have any additional questions. Thank you again.

Best,

Rachel M. ConantDirector, Federal AffairsAlzheimer's AssociationWashington, DC

ATTACHMENT:   Alzheimer's Association - Draft Framework Comments.pdf

Available as separate links:
Alzheimer's Association comments on the Draft Framework for the National Plan to Address Alzheimer's DiseaseAlzheimer's Association - Re: Alzheimer’s Association comments on the Draft Framework for the National Plan to Address Alzheimer’s Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  Comment letter to draft Framework

Please accept the attached document as the Society for Women's Health Research's comment to the Draft Framework for a National Plan on Alzheimer's disease from the NAPA Advisory Council.

Thank you

Martha NolanVice President, Public PolicySociety for Women's Health Research (SWHR)Washington, DChttp://www.swhr.org

ATTACHMENT:   SWHR comment letter on NAPA Draft Framework.pdf

Available as separate links:
Draft Framework for the National Plan to Address Alzheimer's Disease CommentsSociety for Women’s Health Research - Re: Draft Framework for the National Plan to Address Alzheimer’s Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  HHS National Plan to Address Alzheimer's Disease

Please see the attached letter from Division 40 of the American Psychological Association.

William B. Barr Ph.D., ABPPPresident of Division 40 (Clinical Neuropsychology)American Psychological Association (APA)

ATTACHMENT:   APA Div 40 - HHS National Plan Draft.pdf

Available as separate links:
Draft Framework for the National Plan to Address Alzheimer's Disease CommentsClinical Neuropsychology Division 40 American Psychological Association - Re: Draft Framework for the National Plan to Address Alzheimer’s Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  Support Services for caregivers

I am a family caregiver to my husband with young on-set Alzheimer's Disease. I was fortunate to receive support through the Alzheimer's Association, Memory Club & support groups. These groups made a significant difference in my ability to care for my husband.

I understand that funds for supportive service have been cut. Families dealing with Alzheimer's face many crisis situations as they watch their loved one progress through the disease. With the aging of the baby boomers we need to add more services to support people with Alzheimer's disease and their caregivers. I urge you to encourage the federal government to restore and sustain this crucial program. It does so much to help families like mine.

Sincerely,

Carol Shapiro

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  Please support the ADSSP program

I am a family caregiver to a person with Alzheimer's Disease. I was fortunate to receive supportive services through the ADSSP program via the Family Memory Care Program. This program helped make a significant difference in my ability to understand the needs of and care for my loved one.

I understand that funds for this important service have been cut. With the aging of the baby boomers the need is only going to grow - we need to add more services to support people with Alzheimer's disease and their caregivers. I urge you to encourage the federal government to restore and sustain this crucial program. It does so much to help families like mine.

Sincerely,

Robyn Schroeder

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  Restore Funds

I am a family caregiver to a person with Alzheimer's Disease. I feel lucky to have received supportive services through the ADSSP program via the Family Memory Care Program. It helped me greatly to be able to care for my spouse.

I can't believe that funds for this important service have been cut. I am an aging baby boomer myself. We need to add more services to support people with Alzheimer's Disease and their caregivers.

I urge you to encourage the federal government to restore and sustain this crucial program. It does so much to help families like mine.

Sincerely,

Linde HigtonCloquet, MN

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  Support Letter

I am a Caregiver Consultant for the Family Memory Care Program in Minnesota and have personally served over 40 families who care for a person with Alzheimer's disease with the Family Memory Care grant. This program is funded through ADSSP grant money. It has helped make a significant difference in my ability to serve caregivers and keep their loved one at home for an extended period of time due to the support, education and resources available via this valuable program. I have been able to serve caregivers and their families in my funded position for the past four years and the referrals are mounting each month. I am the only person in my region of the state that is available under the Family Memory Care Program to assist caregivers who care for a family member with Alzheimer's disease. The need for this support program is immeasurable!

I understand that funds for this important service have been cut. With the aging of the baby boomers we will have an increased need to add more services to support people with Alzheimer's disease and their caregivers. I urge you to encourage the federal government to restore and sustain this vital and successful, evidence-based program.

Most sincerely,

Kristine Dwyer, LSW, MSFamily Memory Care Program ConsultantCarlton and Southern St. Louis Counties, MN

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  Re: ADSSP

I am writing to let you know first, how much I appreciate Amy Landers, our social worker. Because of this program, it allowed her to introduce us to several areas for help that was much needed for my husband who suffers with Alzheimer's, and for me as his caregiver. I am very grateful for the funding of this special program and how it continues to help, and honestly don't know what I would have done without it. It helps make life better, and is so needed.

Thanks for now and the foreseeable future!

Lillian Williams

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  Strategy 3.a

3.a would benefit by a slight expansion to this effect: encouraging the development of technology-supported, culturally- and linguistically-appropriate interventions that are translatable to family caregiving situations

Boyd H. Davis, PhD.Bonnie E. Cone Professor of TeachingProfessor, Applied Linguistics/EnglishProfessor, GerontologyUNC CharlotteCharlotte NChttp://english.uncc.edu/faculty/80-boyd-h-davis.htmlhttp://webpages.uncc.edu/~bdavis/

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  Supporting Letter!!!!

I was my mother's caregiver; Goyita as we called her, she was a victim with the Alzheimer's disease. I was fortunate to receive supportive services through the ADSSP program. These supportive services helped and made a significant difference with my ability to care for my mother with her disease; thanks so these services I was able to take on a part time job to pay for extra costs arising from her disease.

I understand that funds for this important service have been cut. With the aging of the baby boomers we need to add more services rather than eliminate them to support people with Alzheimer's disease and their caregivers. I urge you to encourage the federal government to restore and sustain this crucial program. Baby Boomers have worked and already gave their contribution to fund these services. It would be regrettable, shameful and cruel that these funds were elimated and leave out people who already worked for this country.

Sincerely,

Evelina Paredes

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  BIO Comments to Draft Framework for the National Plan to Address Alzheimer's Disease

Attached please find the Biotechnology Industry Organization's (BIO) feedback on the draft framework for the National Plan to Address Alzheimer's Disease. Thank you for your consideration of our comments. Please let me know if you have any questions.

Regards,

Laurel L. ToddManaging Director, Reimbursement and Health PolicyBiotechnology Industry Organizationhttp://www.bio.org

ATTACHMENT:   Final Draft BIO NAPA comments 2-7-12.pdf

Available as separate links:
Draft Framework for the National Plan to Address Alzheimer's Disease CommentsBiotechnology Industry Organization - Re: Draft Framework for the National Plan to Address Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 8, 2012

SUBJECT:  The importance of Caregivers Supports and ADSSP

I am the wife of a person with early dementia, my husband and I have been very fortunate to be the beneficiary of services received through the ADSSP program. I cannot tell you what a difference they have made in my life as well as my husbands. We have been able to make many changes that we can already tell are making a difference in his cognitive function and for me it is a lifesaver. I can't do this alone, please continue to fund the ADSSP program or something similar to provide support for those of us who care for people with dementia especially in the early stages when so much can be done to make a difference. Having someone in the community that can walk with me and coach me and my children on developing and implementing a plan has been incredible. There likely will not be a cure for many years, for those of us who a cure will not save please continue to provide the important supports that you have. They mean everything to us.

Thanks and bless you for the wonderful work you are doing,

Donna Walberg

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 7, 2012

SUBJECT:  NAPA Comments

I am a retired business executive whose father, and some close college friends, had Alzheimer's. This lead me to become involved with Alzheimer's activities starting in 2002, and I am a newly elected Alzheimer's Association National Board Director. Please note that my comments do not represent any organization in which I participate.

I start my input by noting my appreciation for the fact that we finally have a National Alzheimer's Project Act. I believe that the work to date on NAPA has been excellent, especially considering the challenges to be addressed and the need to get significant results sooner than later.

A review of complex program histories/results, reveals that to achieve significant progress requires focus and proper funding. In looking at the draft National Plan and associated set of goals, it appears that the agenda has too much going on at the same time. I do believe that all of the identified challenges must be addressed at some point, but I suggest that a much more focused initial effort would lead to better results.

Additionally, we need to consider the probable federal funding constraints that will exist for the next several years.

With focus and funding in mind, I suggest giving priority to two of the stated goals:

  1. Obtain and utilize increased funding for research; we need to get to $2 billion/year immediately.
  2. Improve the care of victims of the disease and provide better education/support for the family caregivers.

A final issue is that the number of government organizations that will potentially be involved with NAPA (see attachment which comes from initial work by the Council) is very large and could impact progress.

Again, looking at successful programs, we see that the simpler the organization/number of interfaces, the better. As such, I suggest that the implementation of NAPA be accomplished with fewer, more responsible entities. I realize this is much easier said than done, but in the long run, would lead to a more successful and less expensive result.

Finally, thanks for the opportunity to provide comments. I am looking forward to a successful NAPA.

Paul WexlerNewport Beach, CA

ATTACHMENT:   Depts and Agencies.xls

Available as separate links:
List of Participating Departments and AgenciesList of Participating Departments and Agencies

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 7, 2012

SUBJECT:  Re' Draft Framework for the National Plan to Address Alzheimer's Disease

Attached please find our comments to the Draft Framework for the National Plan to Address Alzheimer's Disease. Thank you for the opportunity to provide input.

Sincerely,

Laura Landwirth, CAEPresident & CEOLeadingAge Coloradohttp://www.leadingagecolorado.org

ATTACHMENT:   LeadingAge Colorado Comments 02 07 12.pdf

Available as separate links:
Draft Framework for the National Plan to Address Alzheimer's Disease CommentsLeading Age Colorado - Re: Draft Framework for the National Plan to Address Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 7, 2012

SUBJECT:  National ALZ Plan

I was shocked to see that Assisted Living has been left out of the draft guidelines for the National Plan for Alz Disease with the exception of the section on elder abuse. We are filing the attached comments..

RIALA - Our Strength is in Membership

Kathleen KellyExecutive DirectorRI Assisted Living AssociationEast Providence, RI

ATTACHMENT:   RI Assisted Living Comment National ALZ Plan.doc

Available as separate links:
Comments of the RI Assisted Living Association submitted to HHS on the Draft Framework for the National Plan to Address Alzheimer's diseaseComments of the RI Assisted Living Association (RIALA) Submitted to HHS on the Draft Framework for the National Plan to Address Alzheimer’s disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 7, 2012

SUBJECT:  Two Additional Comments on the National Alzheimer's Plan

Below are two comments received from my readers regarding the draft of the National Alzheimer's Plan. Thank you for your work on this incredibly important project.

Norman Roberts says:

After reading the document I am pleased so much interest given to finding a cure. However I would like more emphasis on reasearch on finding better ways to help those expreiencing AZ problems now. We have waited a long time finding a cure and during the continued wait please spend more money, research & engergy helping us now. My specific request is for research to help couples, both are a patient and a caregiver. Skilled people to assist us the with flustration [social & psycological] would help us continue in our home and not cost us or government to care for us in a more expensive setting. After a extensive search I find no specific help for COUPLES both having MCI. I think our medical & government should do better by us.

February 7, 2012 at 5:39 am(11) Trevor Mumby says:

We have 80 staff who are coached in small groups to manage the daily challenges whilst they are living -in with families who are experiencing dementia. Our visiting carers undergo the same coaching. Families are invited to attend coaching groups. It is the DAILY 24/7 domain where NEW, simple skills need to be learned which fit the UNIQUE circumstances of the family dynamic. Our experience is that cosmetic generalised approaches can frequently create even more erratic responses. The results are proof that we have found a method to empower the family, including the person with dementia to live a more well being life. We are based near Oxford UK and would be glad to share.

Esther Heerema, LMSWGuide to Alzheimer's Diseasehttp://alzheimers.about.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 7, 2012

SUBJECT:  Comments on Alzheimer's National Framework

Please see the attached comments from the Assisted Living Federation of America on the draft Framework for the National Plan to address Alzheimer's Disease. If you have any questions do not hesitate to contact me.

Maribeth BersaniSenior Vice President Public PolicyALFA Alexandria, VA

ATTACHMENT:   Thank you for the opportunity to provide comments on the Draft Framework for the National Plan to Address Alzheimermb.docx

Available as separate links:
Comments of the Assisted Living Federation of America submitted to HHS on the Draft Framework for the National Plan to Address Alzheimer's DiseaseDRAFT Framework for the National Plan to Address Alzheimer’s Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 7, 2012

SUBJECT:  CEAL Comments to National Plan

The Center for Excellence in Assisted Living (CEAL) appreciates the opportunity to comment on the draft framework for the National Plan to Address Alzheimer's Disease. Our comments are attached in Microsoft Word and Adobe Acrobat formats. Feel free to contact me if you have any questions or wish to discuss the comments.

Regards,

Josh Allen, RNChair, Board of DirectorsCenter for Excellence in Assisted Living

ATTACHMENT:   CEAL Comments to Draft Framework for the National Plan to Address Alzheimer's FINAL.docx   CEAL Comments to Draft Framework for the National Plan to Address Alzheimer's FINAL.pdf

Available as separate links:
Draft Framework for the National Plan to Address Alzheimer's Disease CommentsCenter for Excellence in Assisted Living - Re: Draft Framework for the National Plan to Address Alzheimer’s Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 6, 2012

SUBJECT:  Comments Draft Framework

Attached please find Merck's comments regarding the Draft Framework of the National Plan to Address Alzheimer's Disease.

If you have any questions, please let us know.

Thank you,

Angela M. StewartDirector & Counsel, Public Policy and Government RelationsMerckWashington DChttp://www.merck.com

ATTACHMENT:   Merck Comments NAPA Framework.pdf

Available as separate links:
Comments for Draft Framework for the National Plan to Address Alzheimer's DiseaseMERCK - Re: Comments for Draft Framework of the National Plan to Address Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 6, 2012

SUBJECT:  Alzheimer's Disease Supportive Services Program Slated for Elimination

Thank you for your time and commitment to the NAPA process. Your efforts are greatly appreciated. As you work diligently to prepare this landmark national plan which will help our country prepare for the coming onslaught of Alzheimer's disease, I want to urge you to address a current program that has helped thousands of families over the past twenty years but which is currently slated for dramatic cuts in 2012 and probable elimination in 2013. The Alzheimer's Disease Supportive Services Program (ADSSP), also known as the Alzheimer's Disease Demonstration Grants to States Program, was created by federal legislation in 1991 with the hope that it would increase access to quality services for people with Alzheimer's disease and their family caregivers nationwide. Since its inception, this program has created services for many under-served populations; Latinos, African Americans, Asian Pacific Islanders, and rural families have all benefited from this investment. Many of the innovative programs created with this funding have been replicated in new cities and states such as the Guidelines for Management of Alzheimer's Disease, n evidence-based, a practice guideline for primary care physicians and the El Portal Dementia Care Network model for reaching under-served populations.

There have been criticisms of the program and like all programs, it could be improved. The major criticism has been that ADSSP serves relatively few families. There are two good reasons for this. First, the program was developed to serve hard-to-reach families. The initial evaluation of the program completed by Dr. Rhonda Montgomery demonstrated that you must reach thousands through culturally appropriate outreach and education in order to bring direct services to relatively small numbers of hard-to-reach families. More recently, the program refocused on bringing evidence-based programs to the broader community. While this is a good goal, it means that fewer families can be reached as these evidence-based programs deliver more intensive services to fewer people.

I want to urge the Council to include support for the ADSSP program in our national plan. The program needs to be institutionalized rather than remain a demonstration project. This is the only national program that is Alzheimer's-specific, delivering respite, support and education to hard-to-reach Alzheimer's families in their communities. Without it, thousands of families will get no services.

I urge you to restore and preserve this important program.

Thank you for taking the time to read this input.

Sincerely,

Debra L. Cherry, Ph.D.Executive Vice PresidentAlzheimer's Association, California SouthlandLos Angeles, CA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 5, 2012

SUBJECT:  Article on Alzheimer's

Please share this with the non and federal committee. Thanks

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money"http://www.michaelellenbogen.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 5, 2012

SUBJECT:  National Alzheimer's Project Act

See attached.

Mary GnosiniCultural AmbassadorLeominster CrossingsLeominster, MA

ATTACHMENT:   Letter.docx

Available as separate links:
Draft National Plan CommentNational Alzheimer's Project Act

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2012

SUBJECT:  Comments on the Draft Framework for the National Plan to Address Alzheimer's Disease

See attached.

Sally MichaelPresidentCalifornia Assisted Living AssociationSacramento, CAhttp://www.CAassistedliving.org

ATTACHMENT:   CALA Comments to HHS 2.3.12.pdf

Available as separate links:
Comments from the California Assisted Living Association (CALA) submitted to HHS on the Draft Framework for the National Plan to Address Alzheimer's DiseaseComments from the California Assisted Living Association (CALA) Submitted to HHS on the Draft Framework for the National Plan to Address Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2012

SUBJECT:  ALFA/ Alzheimer's crisis

As a nurse of over 20 years I was shocked to learn that the draft of recommendations on how to overcome the Alzheimer's crisis didn't include Assisted Living. As our population ages, and is living longer due to advances in detection and treatment Alzheimer's disease will only become more of a problem. Assisted Living is one of the best options for those suffering from this disease. Nursing homes are for those with skilled needs. Medicare will not pay for someone to be in a nursing home because they have Dementia and need help with ADLs they can no longer do for themselves. If a person doesn't have $10.000.000-15,000.00/month to pay privately for a nursing home, which they really shouldn't be in, what option do they have. Children today are no longer able to care for their parents as they were many years ago. Most households have both people working, busy lifestyles, and it's just not an option. Assisted living enables people with dementia to still live independently in a safe environment where help is available when needed, or for those with severe dementia an environment where all of their ADLs, medication management, social, and nutritional needs are provided for. The cost is half the price of a nursing home in a social environment. How this could have been left out makes me wonder who the drafters of the recommendations were, and what their backgrounds are. Not only as a nurse but also as the daughter of a mother who suffered from Dementia, please include Assisted Living. Our older generation deserves the best quality of care in an environment that is enjoyable. We all will be old someday and may have Dementia, we would want this for ourselves so let's give it to our parents.

Sincerely a concerned American,Maria Sands

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2012

SUBJECT:  Comment

Hey, You are missing Assisted Living, Senior Living facilities in your proposals from ALFA. We are more and more involved in the daily living of Seniors with Dementia. So please add us to the wording on all of your proposals. Thanks.

John GagnonDirector of Plant OperationsOrchard Valley at WilbrahamWilbraham, MA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2012

SUBJECT:  Document1

Please read this important email.

Clare WelchAdministrative AssistantWaltham CrossingsWaltham, MA

ATTACHMENT:   Document1.docx

Available as separate links:
Comment on the Draft National Plan to Address Alzheimer's DiseaseDraft National Plan to Address Alzheimer's Disease Comment

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2012

SUBJECT:  Assisted Living Being Added to the National Plan to Address Alzheimer's Disease

I am requesting that assisted living communities be part of the draft framework for the National Plan to Address Alzheimer's Disease. Assisted Living communities care for so many affected by this disease and we would be an asset to the National Plan in addressing this terrible disease.

Please include us as an industry and allow us to help in this critical plan.

Thank you

Valerie WhitmanDirector of OCF EngagementBenchmark Senior Livinghttp://www.benchmarkseniorliving.com http://www.onecompanyfund.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2012

SUBJECT:  National Alzheimer's Project Act

It is with great concern that in review of the draft of the National Alzheimer's Project Act that the entire sector of assisted living benefits was omitted from your review and recommendations. In every state in our country, assisted living venues house and care for men and women who have been affected by Alzheimer's. It is the foundation of senior living to assist with the components of memory care that not only deal with the necessities of daily living such as bathing, dressing, grooming and nutrition, but also to foster the necessary continual mind engaging programming and social camaraderie needs that every person with memory impairment deserves. If your research was thorough, I am sure you found that assisted living is a lower cost and more successful alternative to skilled nursing environments across the country. In a more homelike environment, people thrive as their bodies typically remain well through their disease progression while working to coax their brain connections each day to try to maintain as much cognition as possible.

Please re-evaluate your dismissal of assisted living as part of your recommendations in the National Alzheimer's Project Act.

Thank you for your consideration,

Tracey Hamlin-LandryKingston, NH

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2012

SUBJECT:  NAPA

Please hear my concerns!

Doug McLaughlinAdministrative Assistant, Human Resources & Customer ExperienceBenchmark Senior LivingWellesley, MA

ATTACHMENT:   NAPA.pdf

Available as separate links:
NAPA CommentsNAPA Comments

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2012

SUBJECT:  National Plan for Alzheimer's Disease

I have reviewed the current proposed National Plan For Alzheimer's Disease. As a registered Nurse with over 35 years experience in geriatrics, I would strongly urge you to include licensed Assisted Living Services Agencies in the current proposal. These communities are often the first resource for family members and persons with Alzheimers Disease.

Thank you for your assistance

Lynn R. Veith, RNResident Care DirectorRiver Ridge at AvonAvon, CT

ATTACHMENT:   National Plan For Alzheimer's Disease.doc

Available as separate links:
National Plan for Alzheimer's Disease CommentsNational Plan for Alzheimer's Disease Comments

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2012

SUBJECT:  Assisted Living

I am writing today to express my concern regarding the draft of the National Plan to Address Alzheimer's Disease. I stand with the Assisted Living Federation of America and the Alzheimer's Association in their call to include assisted living communities in this discussion. Assisted living communities play a vital role in the lives of memory impaired residents. The omission of assisted living is completely unacceptable. Below are the changes/additions that we want to see included in the National Plan to Address Alzheimer's Disease.

  • We request that the word "patient" used throughout the document be changed to "individual" or "resident". While we understand that someone under a physician's orders is called a patient, individuals residing in assisted living and other home and community based options are referred to as individuals or residents.
  • Please add "licensed assisted living communities" to the list of settings throughout the document
  • In Goal 3: Change the title to Expand Support of Individuals with Alzheimer's and their Families.
  • In Strategy 3. D The use of the term "residential care facilities" in the first sentence is odd because that term has never been used throughout the document. A more consistent term could be "long term care settings." In two places the term "assisted living facilities" is used and the term "facilities" should be replaced with "communities". This strategy should be strengthened to support a zero tolerance for abuse of individual's with Alzheimer's, regardless of where they live. Criminal background checks, educating family members, residents and staff in how to recognize respond and report suspected abuse and termination of staff when appropriate must be a top priority.

As we all work together to fight this terrible disease, I eagerly anticipate the revised National Plan to Address Alzheimer's Disease. Please do the right thing and include assisted living communities.

THIS LETTER WAS SUBMITTED BY THE FOLLOWING PEOPLE DURING THE MONTH OF FEBRUARY 2012:

  • Jennifer Land, Director of Business Administration, Greenwich Farms at Warwick, Warwick, RI, http://www.greenwichfarmsatwarwick.com (submitted February 3)

  • Elena Leon Fulkerson, Director of Community Relations, Orchard Valley at Wilbraham, Wilbraham, MA, http://www.benchmarkquality.com (submitted February 3). Added information: "...Benchmark Senior Living where we provide housing and care for residents with Alzheimer's Disease and other dementias. I see daily the wonderful impact we have on our residents and their families, providing not only high quality care, but as importantly, an engaging lifestyle in a residential atmosphere...in my opinion, a night and day difference from the traditional "old school" nursing home which still exists. I am a member of the Tri-Country Partnership for the Alzheimer's Association here in Western Mass and volunteer in other capacities with the Alzheimer's Association. I also am a family member of a loved one who has experienced memory loss through Alzheimer's Disease which eventually required placement in a care community."

  • Tracey Hamlin-Landry, Senior Director of Community Relations, Greystone Farm at Salem, http://www.greystonefarmatsalem.com (submitted February 3)

  • Debbie Yerardi, Receptionist, Benchmark Senior Living, Wellesley, MA (submitted February 3)

  • Marcia Werber, RN, Regional Director of Resident Care, Benchmark Senior Living, Wellesley, MA, http://www.benchmarkquality.com (submitted February 3)

  • Sandra DePrimio, Executive Assistant, Investment/Development/Capital Acquisitions Department, Benchmark Assisted Living, Wellesley, MA (submitted February 3). Added information: "I am a caretaker for my 86 year old mother, who is a severe diabetic, has recently developed AFIB and other age-related ailments, but thankfully still has no symptoms of Alzheimer's. It is my sincere hope that she will be able to remain at home until her passing, but if that is not possible and she begins to develop Alzheimer's or any other form of memory impairment, I will be seeking an assisted living community to accommodate her needs. We, as a nation, must care and protect our elderly and stop treating them as a "disposal" segment of our society."

  • Helen Blanchard, Director of Business Administration, Crescent Point at Niantic, Niantic, CT (submitted February 3)

  • Donna DiFabio, Director of Business Administration, Chelmsford Crossings, Chelmsford, MA (submitted February 3)

  • Marcia Kuchuk, Receptionist, Maple Woods, Hamden, CT (submitted February 3)

  • Heather Jagodowski, Harbor Program Director, The Atrium at Cardinal Drive, Agawam, MA (submitted February 3)

  • Jennifer L. Porter, Director of Community Relations, Putnam Farm at Danvers, Danvers, MA (submitted February 3)

  • Cathy Ballini, Executive Director, Atrium at Cardinal Drive, Agawam, MA, http://www.benchmarkquality.com (submitted February 3)

  • Mary S. Young, RN BSN, Resident Care Director, Academy Point at Mystic, Mystic, CT, http://www.benchmarkquality.com (submitted February 3)

  • Dale Adams, Harbor Program Director, Greenwich Farms at Warwick, Warwick, RI (submitted February 3)

  • Todd Hopkins, Plant Operations Director, Benchmark Assisted Living (submitted February 3). Added information: "I have worked with people with Alzheimer's disease for six years now. To me it is one of the most insidious diseases there is. It not only robs the individual of their memories but the most painful is the family members that are lost in a fog. The saddest moment I can recall was watching a granddaughter coming down the stairs crying because her grandmother no longer knew who she was. We associates working in Assisted Living communities are trained not only to deal with the loss of memory for the person but we have a heart for the family members that are so affected by this disease. I took the time that day to sit with the young lady and explain the process that her grandmother was going through. I told her that it was a progressive disease but assured her that her grandmother may remember her once again for a short time. This convinced her to keep coming. Over the next few months she kept coming and to her delight there were times that her grandmother remembered. Because of the care we give and the training we have that young woman got to enjoy the last months of her grandmothers life, occasionally as her granddaughter but mostly (in her grandmothers words) as that wonderful young woman that was always so pleasant. This is a small part of what we in the Assisted Living field bring to the table."

  • Thomas H. Grape, Chairman and CEO, Benchmark Senior Living, Wellesley, MA (submitted February 3)

  • Elizabeth Skerry-Hastings, Senior Executive Director, Benchmark Senior Living, Orchard Valley at Wilbraham, Wilbraham, MA, http://www.benchmarkquality.com (submitted February 3)

  • Susan Boudreau, Harbor Program Director, Blenheim-Newport, RI (submitted February 3)

  • Gregory Batchelder, Executive Director, Greystone Farm, Salem, NH (submitted February 4)

  • Tiffany Lagacy, Program Coordinator, The Atrium at Cardinal Drive, Agawam, MA (submitted February 5)

  • Heather A. Seigars, Director of Business Administration, The Village at East Farms, Waterbury, CT (submitted February 5). Added information: "I am also the granddaughter of a wonderful woman who suffers with Alzheimers Disease. While my Grandma currently has ample family support in her home, I would hope that if things get worse, she would not need to be placed in a Nursing Facility to take care of her Memory Care. She does not require medical intervention, only the care and services of a caring Community such as the one that I work in. Assisted Living Communities such as ours provide QUALITY family-like settings for persons needing Memory Care."

  • Sam Jackson, Executive Director, Haverhill Crossings, Haverhill, MA, http://www.haverhilcrossings.com (submitted February 5). Added information: "My community not only houses memory impaired residents in our secured Harbor program, but also has many residents who are experiencing early stages of Alzheimer's in our traditional environment. On a personal level, my grandmother up until recently lived in an assisted living community in Wisconsin while her own Alzheimer's progress."

  • Melanie Perry, Resident Care Director, Haverhill Crossing, Haverhill, MA (submitted February 5)

  • Peggy Mellen, Director of Business Administration, Ashland Farm, North Andover, MA (submitted February 5)

  • David Kouloganes, Plant Operations Director, The Atrium at Rocky Hill, Rocky Hill, CT (submitted February 6). Added information: "...I am not only employed in the memory impaired industry my father has been afflicted by this disease."

  • Danielle Taylor, Traditional Care Director, Haverhill Crossings, http://www.haverhillcrossings.com (submitted February 6)

  • Melinda Fayette, Social Media Coordinator, Benchmark Senior Living (submitted February 6)

  • Rachel Azer, RN, Interim Harbor Care Director, Ashland Farms, North Andover, MA, http://www.ashlandfarmatnorthandover.com (submitted February 6). Added information: "The Harbor unit houses those with all forms of dementia, with the largest percentage being Alzheimer's."

  • Noeline Cranston, RN, Resident Care Director, Greystone Farm at Salem, NH (submitted February 6)

  • Frida Bartlett, Director of Business Administration, The Atrium at Drum Hill, North Chelmsford, MA (submitted February 6)

  • Barbara Upperman, The Atrium at Drum Hill, N. Chelmsford, MA (submitted February 6)

  • Tracey F. Pidgeon, Director of Community Relations, Atrium at Cardinal Drive, Agawam, MA, http://www.benchmarkseniorliving.com (submitted February 6)

  • Mary Roux, Resident Care Nurse, The Atrium at Drum Hill, North Chelmsford, MA (submitted February 6)

  • Christie Tanguay-Frappier, Director of Business Administration, Orchard Valley at Wilbraham, Wilbraham, MA (submitted February 6)

  • Kelly Sostre, Harbor Program Director (submitted February 6). Added information: "The Harbor program that I work in has 30 residents that have Alzheimer's or another form of dementia. We also have folks come in from the community for our day stay program and they too have Alzheimer's Disease."

  • Tori Gamble, Harbor Program Director, The Atrium at Veronica Drive, Danvers, MA (submitted February 6)

  • Ellen Courtemanche, RN, Resident Care Director (submitted February 6)

  • Scott Weissman, Activity Director, Orchard Valley at Wilbraham (submitted February 7)

  • Brenda Pelley, RN, Executive Director, The Atrium at Drum Hill, North Chelmsford, MA (submitted February 7)

  • Elizabeth A. Harris, LSW, Plymouth Crossings, Plymouth MA (submitted February 7). Added information: "We have a number of very vibrant residents who are also diagnosed with Alzheimer's Disease. It is our privilege to assist these community members in their home which also happen to be an assisted living residence."

  • Chris Golen, Regional Director of Operations, Benchmark Senior Living, Wellesley, MA (submitted February 7)

  • Joe Tortolano, Plant Operations Director, Village @ Willow Crossings, Mansfield, MA (submitted February 7)

  • Joy L. Mondeau, LPN, Care Nurse Supervisor (submitted February 7). Added information: "I have been a nurse for more than 30 years, with most of my experience being caring for the senior population. As we all work together to fight this terrible disease (while some of us that work daily with these individuals embrace time spent), I eagerly anticipate the revised National Plan to Address Alzheimer's Disease."

  • Kathleen Kemp, Traditional Care Director (submitted February 7)

  • Kristin Quarrell, Director of Business Administration, Haverhill Crossings, Haverhill, MA (submitted February 8)

  • Tim Reilly, VP of Human Resources, Benchmark Senior Living, Wellesley, MA (submitted February 8). Added information: "During my 14 years in the assisted living industry (two employers) I have been fortunate to get to know many residents afflicted with Alzheimer's Disease, interact with their families and witness the extraordinary care that was provided until their last days in many assisted living communities."

  • Jean Moran, Resident Care Director (submitted February 8)

  • Theresa Waldron-Yancoskie, Director of Resident Lifestyle, Coachman Square at Woodbridge, Woodbridge, CT (submitted February 8)

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2012

SUBJECT:  CCAL Comments on National Alzheimer's Plan

We respectfully submit the attached comments and appreciate your enabling us to do so.

Sincerely,

Jackie Pinkowitz, M.Ed.ChairCCAL -- Advancing Person-Centered Livinghttp://www.ccal.org

ATTACHMENT:   CCAL National Alz Plan Comments 2.4.12.doc

Available as separate links:
Comments Submitted on the Draft Framework for the National Plan to Address Alzheimer's diseaseCCAL - Comments Submitted on the Draft Framework for the National Plan to Address Alzheimer’s disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2012

SUBJECT:  Draft Framework for the National Plan to Address Alzheimer's Disease

Recently The Department released The Draft Framework for the National Plan to Address Alzheimer's Disease. We thank you for developing a plan and a strategy for addressing Alzheimer's Disease. We are writing to The Department regarding the Draft and the issue that assisted living was omitted from all but one of its strategies and recommendations in the Draft.

Since assisted living communities accommodate a rapidly growing number of seniors with Alzheimer's disease and related dementia, assisted living communities have and will play a role in the future of Alzheimer's care and treatment. In fact, more than one third of current residents living in assisted living have Alzheimer's disease or dementia.

We recommend that assisted living be included in more of the strategies and recommendations in the Draft.

Below are highlighted areas for your consideration:

  • Goal 2. Add licensed/certified assisted living communities to the list of settings in the opening paragraph after "hospitals"
  • Strategy 2.D Add assisted living as a care setting after "physicians office"
  • Strategy 2.E Add assisted living to the list of transition settings after "home"
  • Goal 3: Change the title to Expand Support of Individuals with Alzheimer's and their Families, and add assisted living to the list of care settings after "hospitals"
  • Strategy 3.B Add assisted living before "nursing home placement" in both references
  • Strategy 3.D The use of the term "residential care facilities" in the first sentence is odd because that term has never been used throughout the document. A more consistent term could be "long term care settings". In two places the term "assisted living facilities" is used and the term "facilities" should be replaced with "communities".

Thank you for your consideration of these recommendations.

Emily MeyerPresidentMassachusetts Assisted Living Facilities AssociationWaltham, MAhttp://www.massalfa.org

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2012

SUBJECT:  National Plan to Address Alzheimer's Disease

As a cognitive aging researcher, it's appalling that the new draft framework on AD does not mention the influence of lifestyle and the environment in Strategy 1.B: Enhance Scientific Research Aimed at Preventing and Treating Alzheimer's Disease.

Assuming that AD is entirely a biological disease and it not influenced by the environment and the stimulation that a person receives goes against basic psychological, cognitive, and neuroscience research (e.g., even rats placed in stimulating environments show more neuronal growth). In addition to this complete oversight, such a framework for prevention assumes that there is nothing a person can do (i.e., "we'll give you a drug, and hope for the best"). Providing older adults with ways they can take control of their own future, and possibly influence their own likelihood of preventing AD (e.g., not smoking, not being overweight, stressed, and staying cognitively and socially engaged) is a far more universal and economical approach and avenue to take, in addition to research on pharmacological interventions. Psychological research has been occurring on AD and MCI for years, and failing to acknowledge this contribution is ignorant and hurts the overall goal of addressing AD.

I would also like to note that relying entirely on general practitioners, not trained in detecting dementia symptoms is a poor focus as well. Personally, my aunt was recently having some memory problems, and after having a MRI that was clear, was sent to her GP for follow-up. Without even conducting a MMSE, the GP told her she had dementia, and he would prescribe Aricept. He didn't conduct a MMSE until 2 weeks later, at which point she received a score of 27/30, and the GP said, "oh, I guess she's fine". There is no way dementia can be diagnosed with such little knowledge, and not even simply relying on the MMSE is sufficient. There is a rich literature on neuropsychological testing in diagnosing AD, other dementia types, and using those tests to detect MCI and other conditions. If we can't subject every person with small memory problems to a spinal tap, neuropsychological testing that has been developed to be sensitive to small changes in cognition is a front-runner in where to focus our efforts. Relying on GPs for this type of diagnosis is not appropriate.

Sincerely,

Allison Bielak, PhDAssistant ProfessorDepartment of Human Development & Family StudiesColorado State UniversityFort Collins, CO

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2012

SUBJECT:  NAPA Meeting follow-up

In 2008, I was diagnosed with Alzheimer's disease after struggling to get a diagnosis since my first symptoms at age 39. As one of 5.4 million people living with this debilitating disease, I currently live every day to make a difference. In fact, I am now an advocate for the education and eradication of this disease. While I only had an opportunity to watch it the second day of the NAPA meeting last month, I found it very interesting, yet my memory had already started to fade away. Some of my issues that I came up with are.

The 2020 date should be the date we shoot for as a cure date for Alzheimer's. 2025, should be the date that we eliminated it completely from all who have it, or at least stopped thee progression at their given state. People react to dates and when they see date so far out they will not even give it a second though, that is human nature. I use to see that with all the project I ever ran. While sometimes a date may be unrealistically, it is better to use one that is sooner than further away, keep the momentum going. That is what they also teach in project management.

I could see and hear the same frustration as I had from many of the committee members (both the non and federal) related to the date. Let's do what is right for those have been overlooked for so many years already. Use your heart to make the right decision. I have had the opportunity to speak to some of you, and you are not even sure why it's taken so long to get to this point. Let make this meeting count and make a statement to the World, that you do care about Alzheimer Patients and the injustice will end now.

I also feel the two days was kind of short and the original time given seemed to be cut short based on what needed to be talked about -- that's my viewpoint as an outsider.

It would be nice to have dial in conference number, so the public can also be included to make some statements.

While public can go to the meeting if arranged in advance, I would like to see a separate call in line for people who are invited in advance by phone, into the same conference call #. Just with priority over the drop in callers people.

While I think the use of metrics is great, it should not slow progress down at all. I would even recommend bringing in a master six sigma person who would be able to show how the spending of money now, can lead to the greater saving and man hours in both the health system and government from a short and long-term perspective. The long term savings numbers would blow their minds and they can relate to those expenditures.

As far as the 2 million needed, to fund this, which I still consider that amount to small and should also be raised, If no additional funding exist, then we should cut back from some of the other parts of the pie related to other high priority diseases and make it much fairer.

Everywhere you turn you see something related to Cancer and HIV. Our government contributes 18.7 percent of the NIH research budget to cancer, 9.9% to HIV, and just 1.4% to Alzheimer's. Why so little for Alzheimer's? There are many more people living with Alzheimer's than HIV, yet it receives much less funding.

We need to stop the disparity, or what I almost consider a form of discrimination.

Regards,

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money"http://www.michaelellenbogen.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 2, 2012

SUBJECT:  Recommendations feedback

My name is Dr. Steve Hume and I am a member of the Alzheimer's Association national Board. I was also diagnosed with AD at the age of 60.

Feedback: I feel the framework and recommendations to date are on target and broadly cover the important issues.

Specifically, I would like to see a recommendation directed to Medicare that ensures it will develop and fund innovative in-home and in-community programs and services for persons with AD and their caregivers.

Many AD persons have Medicare but are inelligible for Medicaid. This precludes them from receiving in-home services, respite care and day treatment.

Many families cannot afford these services out-of-pocket. The result is either the caregiver reduces or eliminates their work hours or AD patients are forced into nursing home care prematurely.

When caregivers are unable to work the family suffers, more dollars are spent on welfare programs and the economy suffers as they leave the workforce.

Thank you.

Stephen Hume Psy.D.Alzheimer's Association National Board Member

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 2, 2012

SUBJECT:  NAHCA CareForce Program

Please see attached information. The NAHCA CareForce program has two components that educate and develop frontline caregivers. Feel free to contact me with any additional questions.

Regards,Lee LarimoreSVP, Business DevelopmentNAHCA CareForcehttp://nahcacareforce.org

ATTACHMENT:   NAHCA CAREFORCE BROCHURE.pdf   NAHCA - History Programs Statisitcs 1 25 12.pptx

Available as separate links:
Transform Your Workforce into a Proud & Professional CareForceNAHCA Careforce: Transform Your Workforce into a Proud & Professional CareForce
NAHCA CareForce PresentationNAHCA CAREFORCE

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 2, 2012

SUBJECT:  NCCDP

Respite Care Funds for Care Givers:

We are writing on behalf of the thousands of members of the National Council of Certified Dementia Practitioners, Certified Dementia Practitioners CDP members, NCCDP Certified Alzheimer's and dementia Trainers, Certified Dementia Care Managers (Dementia Unit Managers) CDCM, NCCDP Associate Members, NCCDP Corporate Members and Certified First Responder Dementia Trainers CFRDT.

Respite Care funds must be made available for those people who lack private resources, funds, transportation and family support. Many caregivers provide 24 hour care in their home with no break, financial assistance or outside help. This leaves the care giver exhausted. Many of our nations care givers are elderly themselves. Caring for someone with a diagnosis of Alzheimer's disease or dementia is a full time job. Care givers provide full time supervision, medication disbursements, ADL care (bathing, toileting and dressing), housekeeping services, meal preparation, transportation to and from appointments, etc. Many are unable to work due to the time required to care for a loved one. This depletes their funds.

The respite funds should be used to either place a loved one in adult day care program, hire a private duty aide/home health aide, have a senior companion volunteer come to the home, utilize nursing home and assisted living respite services or whatever community program that works for the Care Giver.

Currently, care givers are exhausted with no relief in sight. Many are depressed and lonely. They are cut off from their friends, church members and neighbors. They are unable to enjoy a quality of life many of us who are not full time care givers take for granted. They are unable to go to church, participate in a hobby or any other social event. Just going grocery shopping is challenging.

Isolation can also lead to abuse and neglect. Most care givers have the best intentions but abuse and neglect can happens when there is stress, isolation, lack of funding and lack of support.

Where there are respite services in a state the Care giver lacks funding and transportation. I saw first hand as a facilitator of a support group the desperate needs of the care givers. Some respite services are time consuming with lengthy paper work required. There may be waiting lists making respite services unattainable when they need it the most. Many community respite services require the care giver to transport their loved one and they are unable to provide this. Or there may be no respite community services with in their community.

There must be state and federal funds available for caregivers without funding to use for respite services. Each community should be looking at ways to keep the patient in the home and provide the care giver options such as home care respite services, assisted living and nursing home respite services and volunteer senior companion programs all of which provides options for the care giver.

Sandra Stimson, CALA ADC CDP CDCM AC-BCExecutive DirectorNational Council of Certified Dementia PractitionersSparta, NJhttp://www.nccdp.org

Please let your association membership, facilities and company employees know about this free service. Please also add us to your web site.

NCCDP ALZHEIMER'S DEMENTIA STAFF EDUCATION WEEK FEBRUARY 14TH TO 21ST.Register at the top right of home page and begin downloading Now to March 1st. Free staff in-services includes power point, hand outs, staff pre and post tests. The tool kit includes, Proclamation, Alzheimer's Bill of Rights and Alzheimer's Pledge and so much more. Fantastic in-service on Sexuality and Intimacy and Dementia. See http://www.nccdp.org

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 2, 2012

SUBJECT:  From NCCDP Comment / Input for National Alzheimer's Plan

We are writing on behalf of the thousands of members of the National Council of Certified Dementia Practitioners, Certified Dementia Practitioners CDP members, NCCDP Certified Alzheimer's and dementia Trainers, Certified Dementia Care Managers (Dementia Unit Managers) CDCM, NCCDP Associate Members, NCCDP Corporate Members and Certified First Responder Dementia Trainers CFRDT.

It must be mandatory that all health care professionals who work in nursing homes, assisted living, CCRC, adult day care, hospice agencies, home care agencies, hospitals, senior living communities and any other setting that provides services to the geriatric population receive at minimum of 8 hours of "LIVE" Alzheimer's and dementia education by certified Alzheimer's and dementia trainers.

There must be continued ongoing education through out the year once they have received the initial training that deals with new advances, regulatory changes, culture change and abuse / neglect concerns. The state regulations for dementia education is different in each state and for each type of service industry. Care providers, front line staff and health care professionals must all receive a minimum of 8 hours of live Alzheimer's and dementia education and ongoing Alzheimer's and dementia education to insure competent and compassionate care. There are currently no national standards. The new federal standard being considered should not target one specific profession but must be all inclusive and include all health care professionals and front line staff who work with the geriatric population.

It must be mandated at the federal level so that all states are in compliance with mandatory live dementia education. Further more, all First Responders which includes Law Enforcement EMT's and Fire Fighters also receive comprehensive Alzheimer's dementia education. As they come face to face with the geriatric population in their community but are ill equipped due to lack of Alzheimer's and dementia education to deal with concerns affecting the geriatric populations such as recognizing abuse / neglect in the home, driving concerns in the elderly. aggressive behaviors and elopement.

Profit and not for profit companies and organizations should be included in a list of organizations and companies who offer live dementia education. There should be a national list of companies who can offer these services. The list should not be regulated nor designed for non profit training organizations but include for profit companies as well. Health Care organizations, First Responders and companies should have the option to pick and choose which organization they wish to utilize to provide live dementia education to their staff.

The initial live Alzheimer's Dementia education should be live training provided by live instructors who are certified Alzheimer's and dementia trainers vs utilizing video and online Alzheimer's and dementia training to insure that the health care professional and front line staff understands the material. It is critical that they be given the opportunity to interact with the instructor, ask questions and be provided the opportunity to discuss issues and concerns they may have. This can not happen with videos and online training. We respect this option for education for ongoing education through out the year but not in place of the initial live training. The National Council of Certified Dementia Practitioners provides live Alzheimer's and dementia education as well as dementia certification to front line staff, health care professionals, dementia unit managers and First Responders. The National Council of Certified Dementia Practitioners also provides train the trainer and certifies trainers as Certified Alzheimer's and Dementia Trainer and Certified First Responder Dementia Trainer who in turn utilize current and most up to date NCCDP curriculum.

Sandra Stimson, CALA ADC CDP CDCM AC-BCExecutive DirectorNational Council of Certified Dementia PractitionersSparta, NJhttp://www.nccdp.org

Please let your association membership, facilities and company employees know about this free service. Please also add us to your web site.

NCCDP ALZHEIMER'S DEMENTIA STAFF EDUCATION WEEK FEBRUARY 14TH TO 21ST.Register at the top right of home page and begin downloading Now to March 1st. Free staff in-services includes power point, hand outs, staff pre and post tests. The tool kit includes, Proclamation, Alzheimer's Bill of Rights and Alzheimer's Pledge and so much more. Fantastic in-service on Sexuality and Intimacy and Dementia. See http://www.nccdp.org

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 1, 2012

SUBJECT:  Draft Framework for the National Plan to Address Alzheimer's Disease

I have red the Draft Framework for the National Plan to Address Alzheimer's Disease. I am very concerned that assisted living facilities (RCFEs, board and care communities, etc.) have been left out of this National Plan. I am respectfully requesting that at least two changes be made. To wit:

  1. Under Goal 2: Enhance Care Quality and Efficiency, add assisted living facilities to the list of settings where high quality of care should be provided. As it is now, the draft only lists people's homes, doctors' offices, hospitals and nursing homes.
  2. Under Strategy 3.B The existing statement: Round the clock care needs of the person with Alzheimer's disease often necessitates nursing home placement should be changed to: Round the clock care needs of the person with Alzheimer's disease often necessitates placement in a nursing home or assisted living facility.

Assisted living facilities (ALFs) play an important role in providing quality care to residents afflicted with Alzheimer's disease. In the past few year, ALFs have been accepting increased numbers of residents with high acuity care, including those with Alzheimer's and dementia and providing quality care at considerably lower cost than nursing homes. Leaving ALFs out of the National Plan to Address Alzheimer's Disease is a disservice not only to these institutions, but also to the thousands of Alzheimer's residents they serve or could potentially serve.

George MozesOwner/AdministratorEvergreen ChaletVista, CA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 1, 2012

SUBJECT:  Alzheimer's Strategies

In my opinion (which is based on years of working in the field of dementia with geriatric psychiatrists) your focus on Alzheimer's Disease is too limited to be useful to those elders who have other forms of dementia. Science tells us that there is more than one form of dementia. Alzheimer's is cortical related dementia, where visuospatial praxis declines, whereas vascular dementia can affect many other parts of the brain, producing executive function decline, depression, and other limiting behavioral changes such as disinhibition on one pole and apathy on the other. Some of these less well known effects of dementia underlie self-neglect, hoarding, inability to drive safely, and suicide.

We should examine the circuits in the brain, localize the likely causes of dementia through MRIs and fMRIs and address them more broadly in any National plan.

Thank you for taking the time to read this. I personally am committed to finding ways to extend autonomy in aging through physical activity interventions. Here is a link to my faculty page.

http://profiles.uthscsa.edu/?pid=profile&id=0V800MZN8

Kind Regards,

Mary (Kelly) Dunn, RN, PhD, PHCNS-BCAssociate ProfessorNancy Smith Hurd President's Chair in Geriatric Nursing and Aging StudiesUniversity of Texas Health Science CenterSchool of NursingSan Antonio, TX

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 1, 2012

SUBJECT:  FW: National Alzheimer's Plan - an ALF member's response from Florida

Michael Barody, past FHCA president and current ALF Exec. Dir., sent the following email to HHS regarding the National Alzheimer's Plan. Michael makes an excellent point. Florida has ½ million residents with Alzheimer's and we know that a majority of nursing home residents have Alzheimer's disease and an increasing percentage of Assisted Living Facility residents. Florida, as the oldest state in the union, is a haven for retirees without family close by which puts them at more risk of needing more formal LTC support.

LuMarie Polivka-West, MSPSenior Director of PolicyFlorida Health Care AssociationTallahassee, FL

==========

From: Michael Barody

As an Executive Director of an assisted living community I am concerned about the lack of focus, in the plan, on the critical role we play in providing services to this vulnerable group of citizens. Of the 180 residents who reside with us 49 are on our early stage to moderate dementia unit. Others in our building also have beginning symptoms. We provide care and services to our residents as well as the families struggling with this disease. Our monthly support group assists our families and the public to meet with others and share concerns and feelings. Creating a quality of life environment for our residents and families is an ongoing challenge that must be supported by research and forward thinking public policies. Thank you for your consideration.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 1, 2012

SUBJECT:  National Alzheimers Plan

As an Executive Director of an assisted living community I am concerned about the lack of focus, in the plan, on the critical role we play in providing services to this vulnerable group of citizens. Of the 180 residents who reside with us 49 are on our early stage to moderate dementia unit. Others in our building also have beginning symptoms. We provide care and services to our residents as well as the families struggling with this disease. Our monthly support group assists our families and the public to meet with others and share concerns and feelings. Creating a quality of life environment for our residents and families is an ongoing challenge that must be supported by research and forward thinking public policies. Thank you for your consideration.

Michael Barody

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 1, 2012

SUBJECT:  Comments

I am a Psychiatric Nurse Practitioner working with the Geriatric Population. I care for and diagnose Dementia on a very regular basis. After reviewing the document for a National Plan to Address Alzheimer's Disease I recommend the following amendments:

Strategy 2.A

Add Neuropsychologist to the list, they are invaluable in the accurate diagnosis of many of the other Dementia's and early identification of mild cognitive disorders, which will likely progress to Alzheimer's. There are not enough of these very specialized professionals to address the wave of dementia that will be occurring with this rapidly growing aging population.

Strategy 2.D

There is a large portion of the population with Dementia, that would be best served by an Assisted Living Setting (not safe at home alone, no family support available, no skilled nursing needs). This large group often live in unsafe conditions because there is no funding source (other than private pay) for this intermediate level of care. Those that need help with meals, transportation, ADL's r/t safety (in and out tub), perhaps medication monitoring/reminders/set-up, daily checks, built in emergency call system in case of falls. This would not have to be manned by RN's like SNF in LTcare. But perhaps monitored by an LPN or Designated Geriatric Provider of some kind with training in the care of mild to moderate Dementia. Families often struggle with putting a loved one in a "nursing home", so those with Dementia are either provided too high or too low a level of care. This would very likely decrease the cost of expenditures for long-term care, as it would substantially delay the use of LTC.

Strategy 3.B

Provisions for in-home respite care for those who choose to have loved ones live with them, is an invaluable service, which would allow for less caregiver burn-out and delay admission to a 24hr facility. Thus cutting down the expenditure of resources, before they are necessary

This Very complex issue will not be solved quickly or easily, I hope the above suggestions from a practitioners point of view are helpful in improving the quality of care and quality of life for those suffering with Dementia.

Leslie A. Briscoe, CNPLouis Stokes Cleveland VA Medical CenterCleveland, OH

[Return to Public Comment Index or This Year's Table of Contents]

JANUARY 2012 COMMENTS

DATE:  January 31, 2012

SUBJECT:  Draft HHS National Plan to Address Alzheimer's Disease - Comments from the National Academy of Neuropsychology

Attached are comments from the National Academy of Neuropsychology regarding the Draft HHS National Plan to Address Alzheimer's Disease.

Please let me know if you have any questions or concerns.

Thank you for your time in advance.

Tim Wynkoop, Ph.D., ABPPBoard Certified in Clinical Neuropsychology (ABCN)Clinical Assistant Professor, University of Toledo School of MedicineFellow & Past Program Chair, National Academy of Neuropsychology (NAN)Co-chair, NAN Professional Affairs & Information CommitteeToledo, OH

ATTACHMENT:   Draft HHS National Plan to Address Alzheimer Disease - NAN PAIC Comments.pdf

Available as separate links:
Draft HHS National Plan to Address Alzheimer Disease Comments from the Professional Affairs & Information Committee National Academy of NeuropsychologyNational Academy of Neuropsychology - Re: Draft HHS Plan to Address Alzheimer Disease Comments from the Professional Affairs & Information Committee National Academy of Neuropsychology

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 31, 2012

SUBJECT:  Opinion input on NAPA

I have learned the HHS is asking public input on the National Alzheimer's Project Act. As an Alzheimer researcher, I feel it is important to share my recent work with you and the members of the advisory committee.

Please find two of our recent articles and a "Press release" attached. The press release summarizes our main points in the articles which address the problems in the current perception and research directions.

Thank you very much.

Respectfully,Ming Chen, Ph.D.Associate ProfessorBay Pines VA Medical Center and University of South FloridaBay Pines, FL

ATTACHMENT:   JAD Press release.pdf    Alzheimer Truth.pdf   What to look for in SD.pdf

Available as separate links:
New Study Challenges Accepted Approaches to Research in Senile DementiaNew Study Challenges Accepted Approaches to Research in Senile Dementia (Alzheimer’s Disease)
What to Look for Beyond "Pathogenic" Factors in Senile Dementia? A Functional Deficiency of Ca2+ SignalingHypothesis: What to Look for Beyond “Pathogenic” Factors in Senile Dementia? A Functional Deficiency of Ca2+ Signaling

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 31, 2012

SUBJECT:  Comment on US Department of Health and Human Services Draft of National Plan to Address Alzheimer's Disease

Thank you for allowing us the opportunity to comment on the current draft of the HHS National Plan to Address Alzheimer's Disease. I urge you to consider the thorough comments offered by the American Psychological Association (submitted to Dr. Lamont on 1/26/12) in your further review of the Plan. Psychologists are an integral part of the research, diagnosis, and treatment of Alzheimer's Disease and I believe they should be included among the key disciplines identified in the Plan Framework.

Thank you for your consideration of our input.

Alison Byrne, Ph.D.GeropsychologistZablocki VA Medical CenterMilwaukee, WI

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 30, 2012

SUBJECT:  Simple Way To Stop Alzheimer's

If you care to view my YouTube video (see PEERS ALZHEIMER), you will quickly see how to end America's Alzheimer crisis. I hope to publish my completed hypothesis--implicating refined polyunsaturated vegetable oils--sometime this year.

I have been working on this disease since 1990, but could not work out a key link in the chain of causation, until helped by Wisconsin neuroscientist Dr Deng-Shun Wang, just last year.

It's Goodbye Alzheimer's at last!!

Best Wishes,

Dr Robert Peers MBBS (Unimelb)General, Preventive & Nutritional Medical PractitionerNorth Carlton. Vic., Australia

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 29, 2012

SUBJECT:  Alzheimer's

I am currently a caregiver to my wife who is a patient of a care facility at Timbercrest Senior Living Community in North Manchester, IN. I do not question the care she is receiving as it is excellent. She has been in healthcare facilities for over two years and in home care for over two years preceding the institutional care. The one thing I have not seen in the draft framework is a way to offset the financial burden for the care of the patient. The cost of the care for my wife is costing me personally with no financial assistance is between $60,000 and $70,000 per year. Most long term care policies for this disease would not be reasonable to afford for most individuals. I think some provision needs to be made to include support for the patients with dementia or Alzheimer's disease through Medicare and this has not been addressed in the draft. This is one disease that after it reaches a certain stage cannot be handled in the home environment and must be taken care of in an institution.

Thank you,

Robert L. HollenbergNorth Manchester, IN

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 26, 2012

SUBJECT:  APA Comments on Draft Framework for National Plan to Address Alzheimer's Disease

Please find attached, the American Psychological Association's (APA) comments on the Draft Framework for the National Plan to Address Alzheimer's Disease.

Sincerely,Papa Andoh

Papa Andoh, MBAExecutive & Policy AssistantExecutive OfficeAmerican Psychological AssociationWashington, DChttp://www.apa.org

ATTACHMENT:   APA Comments on Draft Framework for National Plan to Address Alzheimer's Disease.pdf

Available as separate links:
APA Comments on Draft Framework for the National Plan to Address Alzheimer's DiseaseAPA Comments on Draft Framework for the National Plan to Address Alzheimer's Disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 26, 2012

SUBJECT:  Comments on the National Plan

Thank you for accepting comments on the draft of the National Plan to Address Alzheimer's Disease.

As a rhythm facilitator with a good deal of experience in elder care, I have often noticed that people experiencing the symptoms of Alzheimer's disease strongly gravitate toward any rhythm experience. The research indicates that Alzheimer's causes the brain to lose its sequencing function to a greater degree with time. The research also indicates that the experience of making or participating in rhythm helps the brain coherently sequence events.

This seems to be the initial draw for patients with Alzheimer's. I have heard many of them comment to the effect that participating in rhythm events helps these people "feel normal again," as they usually put it. I find that they will attend rhythm-making events even when most other activities lose their interest.

Rhythm-making in a group also provides multi-faceted wellness opportunities for people with Alzheimer's in all seven dimensions of wellness, as formally defined by the International Council on Active Aging:

Physical exerciseIntellectual stimulationSocial interactionEmotional expressionSpiritual connectionOccupational satisfactionEnvironmental awareness of surroundings

Rhythm is innate to all humans, and when motor or brain functions begin to falter, normal respiration, pulse, and heart rate can be stabilized and strengthened by the artful use of rhythmic activity.

Much store has been put in the efficacy of computer programs to boost brain efficiency. While brain efficiency is important, it is not the only aspect of being human that matters. Brain efficiency directly depends on the function level of all the body systems. We must stop treating humans as simply brains supported by a superfluous body structure. To retain quality of life, and indeed the quality of humanness itself, all the dimensions of wellness must be addressed together.

I hope you will consider inserting a recomendation for social rhythm-making in your final protocol for Alzheimer's disease.

Thank you for accepting my comments.

Candy Davis

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 25, 2012

SUBJECT:  Comment - National Plan to Address Alzheimer's Disease

Thank you for the opportunity to comment on the National Plan to Address Alzheimer's Disease. Attached is my comment.

Chaplain Karen A Reed, DMin, BCCStaff Chaplain/Integrated Ethics Program OfficerSouth Texas Veterans Health Care System

ATTACHMENT:   Comment - National Plan to Address Alzheimer's Disease (2).doc

Available as separate links:
Comment on National Plan to Address Alzheimer's DiseaseNational Plan Comment

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 24, 2012

SUBJECT:  Additional Comment on Draft of National Alzheimer's Plan

This is another comment left by a reader regarding the National Alzheimer's Plan. Cindy Keith, RN, BS, CDP says: As a dementia consultant I applaud the forward movements of our government in this "war" against Alzheimer's. As a daughter who watched her father succumb, and as a professional weeping with families I counsel, I ache at the snail's pace of any help in this war. This is a war in which sweat, tears of frustration and deprivation of a normal life often seem to be the only weapons a family caregiver has against an unseen enemy that resides in the brain of a loved one.

As an author, a speaker and a dementia trainer of staff in facilities, I know just how much many of those staff don't know about how to interact properly with elders with dementia, and it breaks my heart to see the money getting funneled into the pockets of the corporations or wealthy individuals running many of those homes instead of much-needed staff dementia training. That being said, I also know that even when staff receive training, unless the management reinforces and models the training, the staff will revert back to what they used to do. So, training of those people in management is also a critical piece of a successful move toward better care in facilities.

We all need specific tools with which to work, and in this war, tools are few and far between, especially for family caregivers. Information is a required tool and thankfully, About.com is helping on that front.

Let us hope the government will assist those of us possessing tools to help those who need it most.

Thank you for soliciting feedback on this critically important plan.

Esther Heerema, LMSWGuide to Alzheimer's Diseasehttp://alzheimers.about.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 23, 2012

SUBJECT:  Copy of public comments input to Jan 17/18 HHS & Advisory Council on Alzheimer's Research, Care, and Services National Alzheimer's Plan

The attached document is a summary of my public comments made on Jan 17, 2012 at the HHS and Advisory Council on Alzheimer's Research, Care, Services meetings to develop the national Alzheimer's plan. Thank you for the opportunity to publically voice my input at the meeting during the public input session. It was a great opportunity to meet many individuals from both the federal and private sectors who are dedicated. compassionate, and committed to fight against Alzheimer's disease through a national plan of action.

The attached document includes my specific public comments as well a few additional input comments.

Thank you for the opportunity to attend the meetings and I look forward to attending in the future as well. The work of HHS and the Advisory Council is to be highly commended.

Best regards,

Kathleen Srsic-Stoehr, MSN, MS, RN, NEA-BCFamily Advocate and Member of the National Task Group on Intellectual Disabilities and Dementia Practices

ATTACHMENT:   K Srsic-Stoehr Public Cmts to Advisory Council Natl Alz Plan Mtg Jan 2012.docx

Available as separate links:
Comment Summary from Public Input SessionComment Summary from Public Input Session

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 21, 2012

SUBJECT:  Alzheimers National Plan Framework, Public Awareness Campaign

I have read the Draft Framework document and I am encouraged that it include Strategy 3.C: Assist Families in Planning for Future Long Term Care Needs.

May I suggest this be expanded into a national comprehensive and coordinated public awareness campaign? The need for families to get together and talk about how and where they wish to be cared for if they ever need care is one essential element. Another is to put in place the legal documents such as Powers of Attorney and Advanced Medical Directives. And, most important, to consider purchasing long term care insurance BEFORE it is too late as correctly stated in this section.

Please utilize the services of insurance agents who specialize in long term care insurance. I am sure that the following organizations would be glad to assist:The American Association of Long Term Care Insurance (http://www.aaltci.org)The Center for Long Term Care Reform (http://www.centerltc.com)The National Association of Health Underwriters (http://www.nahu.org)

Also estate attorneys, accountants and financial planners should have valuable input into such a public awareness effort.

Finally, within the membership of the Alzheimer's Association there are a number of authors (including myself) who have written books about their experiences. I wrote My Million Dollar Mom. http://www.buybooksontheweb.com/product.aspx?ISBN=0-7414-6713-5 It chronicles my time caring for Mom with the help of a wonderful care giver named Nora. I was able to keep my Mom at home until her death two years ago because she and I planned for this years in advance and that planning, the documents we had in place for her and the insurance that I bought for her made the burden that much less.

I would suggest a national tour of speaking engagements (or regional conference) where we authors can talk about Alzheimer's and how real the problem is.

Please let me know what I can do to help.

Sincerely,

Ross Schriftman, RHU, LUTCF, ACBC, MSAAHorsham, PA

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 20, 2012

SUBJECT:  public comment on Alzheimer's plan

I applaud the committee for beginning this effort to eliminate Alzheimer's Disease AND to support patients and their caregivers who are currently dealing with this devastating disease. I am a professional in the aging field with over 20 years experience in caregiver support and training as well as supervision of In-Home Aides. I also cared for my mother in my home for 4 years before she went to a nursing home for the last two months of her life, so I can speak from a professional AND a caregiver point of view.

By way of supporting the current caregivers and patients I see a big need for training for facility and home care staff, especially line staff in how to deal with Alzheimer's patients and the sometimes challenging behaviors they exhibit. I see a need for facilities (nursing homes or assisted living primarily, but also hospitals) to train staff in dealing with family caregivers as care partners rather than as peripheral entities. Much lack of adequate care could be avoided by clearer communication and understanding what is happening with the patient in terms of the disease.

There is also a HUGE need for funding for such training, for hiring more line staff in facilities, and for providing respite for family caregivers so that they can continue to do the wonderful job they do. Without adequate funding, all the "frameworks" in the world won't make a dent in the root issue. I've seen the Family Caregiver Support Program languish for 10 years now at nearly static funding levels (which is of course going backward since costs are NOT static). The Lifespan Respite program was widely applauded and has lofty goals, but has yet to see any real funding. Caregivers are tired of hearing Congress and federal/state agencies say to them, "oh, it's so wonderful what you do and we want to support you, but there's no money so here's a proclamation (or in this case a "framework") instead."

Again, what you have done thus far is admirable and a good first step. Now let's try to make a difference to real people on the front lines with funding to back it up.

Mary H. TroutmanPrograms SupervisorStanly County (NC) Senior Services DepartmentAlbemarle, NC

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 20, 2012

SUBJECT:  Public Comment for Draft Frame Work Na't Plan to address alz Disease

Please submit our comment for Draft Frame Work National Plan to Address Alzheimer's Disease.

We are writing on behalf of the thousands of members of the National Council of Certified Dementia Practitioners, Certified Dementia Practitioners CDP members, NCCDP Certified Alzheimer's and dementia Trainers, Certified Dementia Care Managers (Dementia Unit Managers) CDCM, NCCDP Associate Members, NCCDP Corporate Members and Certified First Responder Dementia Trainers CFRDT.

It must be mandatory that all health care professionals who work in nursing homes, assisted living, CCRC, adult day care, hospice agencies, home care agencies, hospitals, senior living communities and any other setting that provides services to the geriatric population receive at minimum of 8 hours of "LIVE" Alzheimer's and dementia education by certified Alzheimer's and dementia trainers.

There must be continued ongoing education through out the year once they have received the initial training that deals with new advances, regulatory changes, culture change and abuse / neglect concerns.

The state regulations for dementia education is different in each state and for each type of service industry. Care providers, front line staff and health care professionals must all receive a minimum of 8 hours of live Alzheimer's and dementia education and ongoing Alzheimer's and dementia education to insure competent and compassionate care. There are currently no national standards. The new federal standard being considered should not target one specific profession but must be all inclusive and include all health care professionals and front line staff who work with the geriatric population.

It must be mandated at the federal level so that all states are in compliance with mandatory live dementia education. Further more, all First Responders which includes Law Enforcement EMT's and Fire Fighters also receive comprehensive Alzheimer's dementia education. As they come face to face with the geriatric population in their community but are ill equipped due to lack of Alzheimer's and dementia education to deal with concerns affecting the geriatric populations such as recognizing abuse / neglect in the home, driving concerns in the elderly. aggressive behaviors and elopement. Profit and not for profit companies and organizations should be included in a list of organizations and companies who offer live dementia education. There should be a national list of companies who can offer these services. The list should not be regulated nor designed for non profit training organizations but include for profit companies as well. Health Care organizations, First Responders and companies should have the option to pick and choose which organization they wish to utilize to provide live dementia education to their staff.

The initial live Alzheimer's Dementia education should be live training provided by live instructors who are certified Alzheimer's and dementia trainers vs utilizing video and online Alzheimer's and dementia training to insure that the health care professional and front line staff understands the material. It is critical that they be given the opportunity to interact with the instructor, ask questions and be provided the opportunity to discuss issues and concerns they may have. This can not happen with videos and online training. We respect this option for education for ongoing education through out the year but not in place of the initial live training.

The National Council of Certified Dementia Practitioners provides live Alzheimer's and dementia education as well as dementia certification to front line staff, health care professionals, dementia unit managers and First Responders. The National Council of Certified Dementia Practitioners also provides train the trainer and certifies trainers as Certified Alzheimer's and Dementia Trainer and Certified First Responder Dementia Trainer who in turn utilize current and most up to date NCCDP curriculum.

Sandra Stimson, CALA, ADC, CDP, CDCM, AC-BCExecutive DirectorNational Council of Certified Dementia Practitioners

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 20, 2012

SUBJECT:  Are Dental X-rays Causing Alzheimer's Disease?

Attached please find a PDF of the PowerPoint I prepared for the 1-17-2012 public comments. I am also attaching a Word file and a PDF of the text to the presentation. Both files the PowerPoint and text files contain more information than time allowed me to present in person.

Thank you in advance for posting both the PowerPoint and text file on the website.

Sincerely,

Caroline Rodgers

ATTACHMENTS:   Alzheimer's Advisory Council presentation by Caroline Rodgers 1-17-2012 FINAL REVISION.pdf    Alzheimer's Advisory Council -- Caroline Rodgers -- 1-17-2012 sub FINAL.pdf

Available as separate links:
Are Dental X-rays Causing Alzheimer's Disease?Are dental X-rays causing Alzheimer’s disease?
Are Dental X-rays Causing the Alzheimer's Epidemic?Are dental X-rays causing the Alzheimer’s epidemic? Unifying hypothesis explains puzzling AD facts

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 20, 2012

SUBJECT:  Alzheimer's NAPA Framework

 I'm adding my families voices to those who want to see Alzheimer's disease eradicated ASAP. The NAPA framework is a great start -- a late start, but a great start none the less.

Please accelerate the 2025 goal & support the investment in Alzheimer's research & figure out ways to accelerate the drug treatment. I realize this is probably one of the worst times in history to be asking for more government funding -- but we didn't make significant progress on any of the other major illnesses until we focused on them by utilizing our national resources & making the eradication a priority!

This illness kills people, depletes their savings & takes a significant toll on families & caregivers. I know first-hand -- my mom has Alzheimer's, my aunt has Alzheimer's, looking back -- my grandma had some form of dementia too. Illness is never easy, but when the course of the disease is so long & it takes away the essence of who you are, it becomes devastating. There are no words to express the heartache & loss.

Thank you for your attention to this matter.

Sheri Supena

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 20, 2012

SUBJECT:  ideas to be include in draft plan

I don't know who this letter is going to, but I hope to spread the word as often and to as many people as possible. Attached in the word doc are my suggestions.

Best regards,

Patrick M. Sullivan PhDAssociate ProfessorDepartment MedicineDivision GeriatricsDurham VA Medical CenterDuke UniversityDurham, NC

ATTACHMENT:   The greatest challenge to finding new treatmens to AD is.docx

Available as separate links:
The Greatest Challenge to Finding New Treatments to ADThe Greatest Challenge to Finding New Treatments to AD

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 20, 2012

SUBJECT:  Urge to adopt the 2020 goal of increased investment in Alzheimer's research and faster drug development

As a long standing researcher on what causes Alzheimer's disease, and how to prevent and cure it, I urge you to immediately sponsor the proposal to increase funding for Alzheimer's disease research; the figure of $2 billion sounds about right. This was done for HIV/AIDs which is now a manageable disease. The same can happen for AD- The last few years have been exceedingly bad for AD research funding -- I have never before seen my research colleagues have to leave their positions, or leave science all together because they have not been able to secure NIH funding. The usual casualties are the more junior faculty, but I have seen it happen to senior faculty also, here at Columbia, one of the powerhouses of AD research. All of us spend much more time writing grant proposals than doing science which is a disaster if you really want progress.

I myself have cut way back on expensive translational research that uses mice genetically engineered to have Alzheimer's disease to identify good drug targets, so I now use much cheaper (but far less informative) cell models. This is entirely due to my inability to fund the much more costly translational research, even though I have been pretty successful competing for NIH funding.

Please, if you want to prevent and cure this disease, which is entirely possible with the right support, adopt the 2020 goal by increasing investment in Alzheimer's research and faster drug development and start by immediately injecting a realistic amount of funding into the research so we dont continue to rapidly slip backwards from the great progress we have made in the last 20 years.

Thank You,

Karen Duff, Ph.D.Professor,Department of Pathology and Cell BiologyTaub Institute for Alzheimer Disease ResearchColumbia University Medical CenterDepartment of Integrative NeuroscienceNew York State Psychiatric InstituteNew York NY

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 20, 2012

SUBJECT:  Comments Regarding NAPA Advisory Council Meeting

I am writing to encourage adoption of the early 2020 timeline and $2 billion in annual funding to combat Alzheimer's.

As the majority of our population passes their fifties, this insidious disease has the potential to overwhelm and cripple our health care and care giver systems and our economy over the next ten years.

Urgent action is needed now to avert a disaster over the coming decade.

Thank you in advance for your strong support of these measures.

Sincerely

Les DeakWashington, DC

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 19, 2012

SUBJECT:  Comments for the NAPA Advisory Board

Attached is the a letter commenting on the efforts the Advisory Board in currently considering.

Thank you for your consideration of our comments.

Jean WoodDirector, Aging and Adult Services DivisionMinnesota Department of Human ServicesExecutive DirectorMinnesota Board on Aginghttp://www.dhs.state.mn.ushttp://www.MinnesotaHelp.infohttp://www.MnAging.org

ATTACHMENT:   adssp support letter01-2012.pdf

Available as separate links:
Comments on the Draft FrameworkDraft Framework Comments

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 19, 2012

SUBJECT:  Comment

While I am grateful that you have set a deadline for the Alzheimer's Prevention or to slow down the progression of the disease, 2025 is not nearly soon enough. There will be millions of more people with the disease by then, and millions of more lives lost. We need a cure or prevention and we need it now.

I am a caregiver for a mother with Advanced Alzheimer's and while it will be way too late to save her it can save me and millions of others. Alzheimer's and Dementia run in on my mother's side of the family; my Grandmother had it when I was a teenager and she lived with us until the end and so I have lived through this before and now again with my mother, my mother's sister also had Dementia and she passed away last year. It is completely devastating to watch and to go through, I wouldn't wish it on my worst enemy, my father and I are completely exhausted, but we want to keep my mother home with us until the end. I am worried that I will have it very shortly because it seems to run in the family and it scares me to death after going through this twice I would rather be dead then to be diagnosed with this extremely horrible disease. I am a single women with no children and if I should get it next, I am worried what will happen to me, I will have no one to care for me and it terrifies me so much I can't sleep thinking about it. It robs you of everything, your memories, your thoughts, your independence, your dignity, you can't do anything at all for yourself anymore and you cry all the time, because you actually know something is happening to you and you are scared to death. That is how my mother feels every day. She cries all the time and says what is happening to me, why can't I do anything anymore, why don't I feel well, don't leave me I am scared, she thinks people are poisoning her and trying to kill her, she thinks she is lost. I could go on and on, but if you know someone personally in your family that has this horrible disease, then you know what I mean. Please try to get this done way, way sooner, at least by 2020, which is still way too late. Thank you for listening.

Sincerely,

Lisa Marotta

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 19, 2012

SUBJECT:  FW: Now Available for Public Comment through Feb 8, 2012: Draft Framework for the National Plan to Address Alzheimer's Disease

Like the draft ....would encourage expansion on section, 2.A: Build a Workforce with the Skills...... Has NICHE or the Hartford Foundation/Robert Wood Johnson had an opportunity to engage with this work? There may be efforts underway that they currently support or would be interesting in partnering here. Our VA is NICHE designated and we are tapping into much of that work in growing a better workforce here to care for seniors overall, but also some specific programming for the Veterans suffering with dementia.

Thanks for the chance to submit feedback!

Susan Gresser, MS, RN, GCNS-BC, APNPGerontological Clinical Nurse SpecialistZablocki VA Medical CenterRECC DivisionMilwaukee, WI

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 18, 2012

SUBJECT:  National Alzheimer's Plan

Dear Secretary Sebelius: I am writing to you on behalf of the estimated 134,000 individuals battling Alzheimer's in Oklahoma and Arkansas. That number will grow significantly over the next two decades. The time is now for a comprehensive plan for America to address this escalating epidemic.

My family understands the impact of Alzheimer's. After a 17-year degenerative struggle, my grandfather lost his battle with this devastating disease. This battle is one that I take on as my mission, both because of my role with the Alzheimer's Association, and due to my family's experience.

We urge you to maintain the course you have set toward a bold, urgent and accountable National Alzheimer's Plan. It is imperative that the National Alzheimer's Plan includes practical applications for everyone impacted by the challenges of Alzheimer's to accompany the sound policy that will be presented in the final plan.

Respectfully,

Mark FriedPresident & CEOAlzheimer's Association Oklahoma and ArkansasTulsa, OK

ATTACHMENT:   Secretary Sebelius 011812 ltr.pdf

Available as separate links:
Letter to Secretary SebeliusLetter to Kathleen Sebelius

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 18, 2012

SUBJECT:  Letter on behalf of the Heart of America Chapter regarding National Alzheimer's Plan

We urge you to maintain the course you have set toward a bold, urgent and accountable National Alzheimer's Plan. Please find attached a letter on behalf of the Heart of America Chapter.

Sending you warm wishes from Kansas,

Debra R. BrookExecutive DirectorAlzheimer's Association, Heart of America ChapterPrairie Village, KS

ATTACHMENT:   Letter to Secretary Sebelius.pdf

Available as separate links:
Letter to Secretary Sebeliuscmtach174.pdf

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 18, 2012

SUBJECT:  to Dr. Helen Lamont comments on Alzheimer's care; proposal for long term, affordable Alzheimer's care

I heard about this Federal, national initiative with great interest. Like cancer care, there needs to be an emphasis on research; however, there also needs to be an emphasis on finding high-quality, low cost, exceptional long-term care with dignity for persons with Alzheimer's and their families.

I am attaching a proposal I have for such (nationwide) care. I would like it to be considered by the committee as part of the national plan. I think it addresses care-giver support, the health care and other financial expenses, and the need for persons with Alzheimer's to live the rest of their lives with dignity.

Please contact me if you have additional questions.

Bonnie E. Smith, PhD, PA, CCC-SLPPrivate PracticePort Charlotte, FL Professor Emerita of Speech PathologyUniversity of Illinois at ChicagoCourtesy Research ProfessorUniversity of South Florida, Tampahttp://www.voicespeechstudio.com

ATTACHMENT:   Alzheimer's long term care proposal.doc

Available as separate links:
Proposal for a New State (Nation)-Wide Model for Long-Term Alzheimer's Care DeliveryProposal for a New State (Nation)-Wide Model for Long-Term Alzheimer’s Care Delivery

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 17, 2012

SUBJECT:  for meeting today

There are many young people living with Alzheimer's disease. Many of them are frustrated, frustrated, and more frustrated. Not because they have Alzheimer's, but because of the disparity and stigma surrounding this disease. The 2025 date is proof of the lack of interest to a cure.

Everywhere you turn you see something related to Cancer and HIV. Our government contributes 18.7 percent of the NIH research budget to cancer, 9.9% to HIV, and just 1.4% to Alzheimer's. Why so little for Alzheimer's? There are many more people living with Alzheimer's than HIV, yet it receives much less funding. More funding is desperately needed.

No one wants to talk about this disease. The people directly impacted by this disease do nothing because they are overwhelmed dealing with the disease. Alzheimer's disease impacts so many aspects of people's lives, careers, hobbies and the many things we take for granted each day. Most patients find it difficult to learn something new, which ends up creating many issues for the patient and family. Most patients die within 4-8 years of diagnosis. There are no survivors of Alzheimer's disease. Why are stars or famous people not proud to stand up and support this cause? There is no pretty outcome, but that is why their help is needed.

Today something can be done to change that. We can start by advocating for the cause. Let's start by speaking up for the many others who can no longer write, speak or have passed on. Please help support their cause like we do for others. We need to enlist the backing of famous people so the perception will change from what exists today. Remember, it does not only affect the older generation. Alzheimer's disease can strike way before the age of 65. This younger-onset version has an even bigger impact on those diagnosed with it. Alzheimer's disease is a crisis in America and the predicted cost of care will be $1.1 trillion, based on today's dollars, by the year 2050. The number of people diagnosed will more than double by then without our action now. This is the 6th leading cause of death, and the only one out of the top 10 causes of death in the US that cannot be prevented, cured, or even slowed down in its progression. It is very easy to read this article, experience a moment of sympathy, and then move on without doing anything.

Keep in mind this could one day affect you, your spouse, your son or daughter, their grandchildren, or even a close friend. Please do not wait until that day. Do something today.

Please help by joining the cause to make others aware of this debilitating disease and how it also affects young people. The youngest on record is 24 years old. Please reach out to the website so we all can work together to find effective treatment for Alzheimer's disease. Someone will develop the disease every 69 seconds. That number will increase to every 33 seconds by 2050.

Don't wait, our time and lives are too valuable. http://www.michaelellenbogenmovement.com/

Michael EllenbogenAuthor of "The Insider's Guide To Saving Money" http://www.michaelellenbogen.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 17, 2012

SUBJECT:  Comments on Draft on National Alzheimer's Plan

The following are comments left by my readers regarding the draft of the National Alzheimer's Plan. Thank you for developing this plan and soliciting feedback!

(1) Jim says:

Back in 1961 president John F. Kennedy made a commitment of going to the moon. Then in 1969 NASA accomplish that goal, so if you do the math it only took about 8 years. Why does the government feel it would take only13 years to find a cure for Alzheimers? The drug industry have tried for years.in finding a cure. Meanwhile, the skilled nursing homes are being filled with dementia/Alzheimers victims in different stages that either end up dying of malnutrition or pneumonia. The disease is rapidly growing out of control as we are living longer.I fear the time to address this problem has already passed.

January 16, 2012 at 7:17 am(2) carla danesi says:

Its up to us as the americans who are caregivers for those afflicted to get involved with the council and help drive their progress so that it wont take 13 more years.i arranged care for my mom who has severe alzheimers and traveled to Washington to be involved with the councils first meeting.im on a limited budget.We can make this happen-We must!thankyou carla danesi glorias daughter "remember gloria,gloria lives"

January 16, 2012 at 5:10 pm(3) Terri Litz says:

In an effort to help people with Alzheimer's and their families the government should help financially by adding to medicare a provision to help pay for care givers, The cost of care is outragious. In the beginning some care and then 24/7. Nursing home options are just as expensive and take the quality of life away from individuals with dementia. When there is no money left and medicaid is the only option left the government intervenes. Then the Alzheimer's person has to have all their caregiver's changed to an approved medicaid agency. This change alone is frightening for the family and changes the relationships built up over years with private caregivers. My mother has had Alzheimer's for 9 years so far. Benefits from the VA have not been forthcoming for almost a year and seem almost unreachable. More documentation, more waiting and never an answer as to when her aide and attendance benefits will start or if she will ever even receive it. My father was a VET from World War II. I call the VA every 2 weeks and get no where. More documentation -the application was filed last Febuary and now almost a year later they are asking for more information/ medical information faxed 3 weeks ago and now they want financial documentation. It seems that they are waiting for my mom to die. Advocate all the time and get no where.

January 16, 2012 at 6:45 pm(4) kathy lockhart says:

Besides the research that needs more money for this disease, medicare and other insurance companies need to support care in the home 24/7. My 83 year old mother can not do it for my dad who is 84. We have needed in home care for that past 2.5 years. We have been fortunate to afford the care so far but it isn't going to last. I do NOT want to put my father in a nursing home that still does not know how to care for Alzheimer or any other dementia patient.

Changes in the healthcae system to prepare and regulate whether or not they are in fact providing best practices for these patients is important. Without government interventions, families struggle inordinately financially, emotionally, and physically. The caregiving will kill my mom before anything else. Unless I quit my job to help, I can only do the weekends. Isn't it cheaper to keep him at home than place him?? Looks that way to me. Thanks, Kathy

January 16, 2012 at 11:16 pm(5) Michael Brennan says:

To prevent Alzheimer's disease, let's consider how people in countries with little Alzheimer's disease live (differences in diet? stress? sleep? environment? other differeces from us?)

Let's assure funding for any reasonable research proposal that could help prevent or delay Alzheimer's. The federal deficit is no excuse for skimping on this urgent need. The deficit will be far greater if we don't prevent or delay Alzheimer's disease.

January 17, 2012 at 12:38 am(6) Miriam Monfredo says:

I will echo what others have said in regard to the need to fund home caregiving through a medicare provision. The cost of hiring someone from outside for even one day a week is prohibitively expensive for many families. It's far less expensive to society overall for Alzheimer's patients to remain in their homes and this fact should be reflected in financial relief to their primary caregivers. Until a cure is found, this financial need will become even more acute in our aging population.

January 17, 2012 at 6:29 am(7) Trevor Mumby says:

I know it fantastically difficult for all of us to STOP, turn around, see the person with dementia as OUR teacher and learn what changes we have to make in ourselves to promote well-being in our lives.

Seeing our loved one as a SICK PATIENT compounds the agony.

How many more trillions of dollars will poured into the monster money eating pharmaceutical industry? (Are you watching our financial decline?)

The variety of behavioural challenges is the MAJOR problem.

Doctors, nurses and the medical model is for SICK people, not people who are challenging us and our own mental strength 24/7.

It is not really surprising to explain the difficult behaviour around people where dementia is being experienced.

Acute fear, panic, confusion, irrational actions are telling us to LEARN the art of conducting situations in a light creative style. When the lessons are mastered, the progression of dementia is about how well YOU are developing into a wise and kindly person through using your new skills.

Esther Heerema, LMSWGuide to Alzheimer's Diseasehttp://alzheimers.about.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 16, 2012

SUBJECT:  Alzheimer's disease

To prevent Alzheimer's disease, let's consider how people in countries with little Alzheimer's disease live (differences in diet? life style? stress? sleep? environment? other differences from us?)

Let's assure funding for any reasonable research proposal that could help prevent or delay Alzheimer's. The federal deficit is no excuse for skimping on this urgent need. The deficit will be far greater if we don't prevent or delay Alzheimer's disease.

Michael Brennan

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 16, 2012

SUBJECT:  Comments NAPA Draft Framework

Thank you for this opportunity to provide comments on the Draft Framework for the National Plan to Address Alzheimer's Disease. The Prepare Minnesota for Alzheimer's Disease 2020 (PMA 2020) collaboration congratulates NAPA on this first important step in the development of a national plan to overcome Alzheimer's disease. The Draft Framework presents a comprehensive set of strategies to address this devastating disease that places an enormous emotional and financial burden on individuals with Alzheimer's disease and their families and also on the health and community care systems committed to supporting them. These strategies will spur research needed to cure the disease, early detection to permit individuals and families to delay premature decline and engage in planning that can have a tremendous impact on quality of life and provide the support needed for informal caregivers to maintain their own health while providing care.

As NAPA moves forward in the development of the plan, we recommend that it look to the accomplishments of the Alzheimer's Disease Support Services Program (ADSSP) for inspiration and guidance. The ADSSP program is funded by the Federal Government and administered by the U.S. Administration on Aging. Nationally ADSSP has provided grants to states to build dementia capacity within public and private agencies, building a core of expertise that has led to the development of services and systems that have changed the way in which community and health care services identify and support people with dementia and their families. Over the last twelve years, Minnesota has gratefully used this resource to embed dementia capability within county long term care assessment systems, to engage with local clinics and hospitals to identify people with dementia early and connect them to education and support services and to translate evidence based interventions into practice such as the New York University Caregiver Intervention that has been demonstrated to delay nursing home placement by up to 18 months compared to the control group.

We encourage you to build on this strong base by calling for restored funding for ADSSP which was reduced by 65% for 2012. It makes no sense to so severely reduce a program that embodies so many of the objectives of NAPA and the Council at least until a better program that can more effectively achieve these objectives is ready to go. We encourage you to call for an analysis of the strengths and weaknesses and lessons learned from ADSSP to inform the design of a new program that builds upon its achievements. And then call for adequate federal funding to meet the new program objectives. NAPA provides an incredible opportunity to take the best of what we've learned and grow it into community and health care systems that provide the support and education needed anywhere people with dementia and their informal caregivers reside while it is also working towards the cure we all hope for.

PMA 2020 is a voluntary, state-wide collaboration of medical, academic, community, government, business and nonprofit stakeholders across Minnesota seeking to implement needed system change, using the Minnesota legislatively mandated Alzheimer's Disease Working Group recommendations as a springboard for action.

Robert KarrickChairPrepare Minnesota for Alzheimer's 2020

ATTACHMENT:   2012 Napa framework comments.pdf

Available as separate links:
Comments on the Draft FrameworkDraft Framework Comments

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 16, 2012

SUBJECT:  Public comment on draft NAPA plan and AoA Alzheimer's programming

I am a retired aging services professional of thirty years who also is a member of an extended family strongly affected by Alzheimer's disease. I support the draft NAPA plan for its comprehensiveness, common sense and accountability. Minnesota has recently developed a legislatively-mandated report regarding how the state needs to prepare for Alzheimer's that is in essential alignment with the NAPA plan. In my experience it bodes well when federal and state efforts are in alignment; especially when supported by community advocates--which I fully expect to be the case with NAPA.

Now there is an opportunity to see whether the plan is just another document and whether the advisory council can be effective in guiding federal resource allocation regarding Alzheimer's to be in alignment with the plan.

The Alzheimer's Disease Support Services Program (ADSSP) of the Administration on Aging has seen its funding reduced by more than half. ADSSP has provided grants to Minnesota to build dementia capacity within public and private agencies, building a core of expertise that has led to the development of services and systems that have changed the way community and health care services identify and support people with Alzheimer's and their families. Over the last twelve years, Minnesota has used this resource to build dementia capability within ongoing and separately funded programs and services making them Alzheimer's capable. That capability is now being embedded into evolving state and federal health reform activities within Minnesota.

For the last decade, the ADSSP-funded planning and innovative programming was our state's most significant public sector activity advancing the Alzheimer's goals and strategies aligned with those contained in the NAPA plan. Please review and consider the strong advisability of maintaing ADSSP capability as a key component to realize the vision of the NAPA plan. Work with AoA to build the alignment and accountability to the national plan even stronger.

Respectfully submitted,

John SelstadMinneapolis, MN

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 13, 2012

SUBJECT:  Comment Re. National Alzheimer's Plan and Mental Health

Many of us believe that it is very important that the National Alzheimer's Plan address mental health issues in the lives of people with dementia and their family caregivers. That was the gist of the discussion that took place at SAMHSA on December 16 when a group of experts were brought together to provide recommendations for SAMHSA regarding NAPA. This past week I published a short piece in the Huffington Post that elaborated on this position a bit. I would be glad to provide more extensive ideas if that would be useful.

Here is the link to my piece. http://www.huffingtonpost.com/michael-friedman-lmsw/dementia_b_1189082.html

I have also attached a PDF.

Sincerely,

Michael B. Friedman, LMSWColumbia University School of Social WorkMailman School of Public HealthFounder and Honorary Chair,The Geriatric Mental Health Alliance of New York

ATTACHMENT:   Meet_MH_Needs_of_People_With_Dementia.pdf

Available as separate links:
Meet the Mental Health Needs of People With DementiaDraft Framework Comments

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 13, 2012

SUBJECT:  Alzheimer proposal

I was reading about the upcoming legislation regarding Alzheimer's. I am very happy our Government is taking steps to address this upcoming tsunami called Alzheimer's that is going to hit our country. I am not sure where to start? so i will start at the beginning my Mother was diagnosed 11 years ago with Alzheimer's.

That was the beginning of the journey I am on with her and this disease. She is now in the late stage of the disease she does not know me very much but that's OK. What I learned from my experience was that there was not enough help out there for caregivers and family members of Loved ones with the disease!! The statistics are that 64% of caregivers of Alzheimer's are hospitalized or Die before their loved ones!! That has to change we need to be giving some tools to these people so they can survive the caregiving process. I took three years to go and investigate and learn everything I could so I could take care of my Mom the best I could. In that process i saw the need to educate the people dealing with their loved ones on how to take care of their loved ones while keeping their stress levels down!. I can't state the importance of this. If we could help everyone understand how to do this we would save Money those same people would be healthier staying out of hospitals and keeping the Health Care costs down. I am not sure if this interests you but if it does I have alot more to say about my experiences talking to thousands of people dealing with this disease. I Lead 5 support groups a month for my Church and the Alzheimer's Association locally. I am providing a link to a local article written about me for some background. I would be happy to help in any way I can. http://www.ocregister.com/articles/care-333943-says-home.html

Thank You and God Bless,

Vic MazmanianMind, Heart & Soul MinistrySaddleback Church & Silverado Senior LivingDirector of Faith Outreach

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DATE:  January 13, 2012

SUBJECT:  Comment

My name is Cristian SOCOLOV , and I am a romanian physician working in France in the Alzheimer's disease care field .

I built my medical career studying and promoting the Alheimer's disease special care field, in Romania , and in France also .

I have some special results in the scientific research of the thyroid function in the Alzheimer's disease .

I followed ,with great interest , the special US Government effort, the direct implications of the White House , in the Alzheimer's disease problem.

My question is related to the scientific research in Alzheimer's disease : are they specialised organisations in the USA , interested by news research idea in this field ?

Gratefully, and a Happy New Year !

Dr.Cristian SOCOLOV M.D.,Ph.D.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 13, 2012

SUBJECT:  NAPA comment from individual

I shared the following comments with the Alzheimer's Association about the draft of the National Plan (NAPA), and wish to share them directly, also, with your office.

My father was diagnosed from autopsy with Alzheimers and other related disorders. I am not a medical professional.

Comments:I believe the document should mention related disorders as a group, or specific examples of related disorders such as Lewy Body Disease and Parkinson's Disease. It seems to me that research is headed in the direction of finding that the large group of people that we formerly referred to as Alzheimer's Disease patients are now being determined, by exam or autopsy, to have various related disorders, sometimes instead of or in addition to Alzheimer's Disease. The way the draft was written, I foresee that some patients/clients/test subjects could, at some point, be excluded if they are found to have a related disease. They could be excluded from participation or services. If the related disorders are not accounted for in this document, it may be possible that some research or projects become derailed, if the test subjects are found to primarily have one of the related disorders.

Sincerely,Amy E. FreemanHilliard, OH

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DATE:  January 13, 2012

SUBJECT:  Draft Framework for the National Plan to Address Alzheimer's Disease

My name is Bruce Lamb and I am an Alzheimer's researcher and Staff Scientist in the Department of Neuroscience in the Lerner Research Institute at the Cleveland Clinic. I would like to provide comments and suggestions regarding the Draft Framework for the National Plan to Address Alzheimer's Disease that was released on January 9, 2012.

I think this is a very welcome and important first step in devising a National Plan for combating Alzheimer's, and the goal laid out for developing a treatment/prevention for Alzheimer's disease by the year 2025 is admirable and likely achievable, provided the plan is sufficiently bold and transformative. While I appreciate that the current document is only a Framework for the National Plan, there are several significant issues that I hope you will consider as the details of the plan are developed, in particular as it relates to research investments, strategies, goals and infrastructure (Goal 1).

1) Committing Additional Resources to ResearchThe planned NIA sponsored conference in May 2012 will provide invaluable insight into the goals and strategies required to achieve the goal of a treatment/prevention by the year 2025. However, while a reorganization and coordination across all research domains will increase research productivity, without additional research funds, the goals of having a treatment/prevention by 2025 is likely unattainable. There is currently no effective treatment for AD and thus additional funds are necessary to promote basic research, translational research, drug development and clinical research. Currently, funding rates at NIH and most non-profits is in the single digits (5-10% of all grant being funded), thus leaving a very large number of meritorious applications (the top 20-25%) unfunded. If we are truly serious about achieving the goals set forth in the Draft Framework, additional federal, non-profit and industrial investments in Alzheimer's research have to be part of the answer. While there will likely a considerable debate about the exact amount of investment required to achieve this goal, a starting point would likely be $2 billion/year as put forward in the Alzheimer's Breakthrough Act of 2010. As clearly laid out in the attached paper by myself, Dr. Todd Golde and Dr. Doug Galasko, similar types of investments in other diseases (i.e., HIV/AIDS) have proven transformative and lead to effective therapies. While I appreciate that the current funding climate is very tight and highly political, it is only with these types of investments are we likely to transform the Alzheimer's research endeavor and achieve Goal 1 of the Framework.

2) Strategies/GoalsThe conference in May of 2012 will certainly help identify the key research areas that need to be addressed to achieve Goal 1 of the Framework. As part of the detailed National Plan, it will be important to both identify these targets as well as commit funding commensurate to achieve the goals identified. Funding one research domain at the expense of another with not enable us to achieve the ultimate goal laid out in the Framework. For each target, clear goals must be identified and a infrastructure/organization (see below) put in place to regularly assess progress within these areas.

3) Infrastructure/OrganizationTo achieve Goal 1 of the Framework, it will be absolutely critical to have an infrastructure and organization that can coordinate federal research efforts across all funding agencies, interact with non-profits and industry, promote awareness of the disease and the role that research will play in combating the disease as well as reporting to the Advisory Council directly as outlined in the Framework. In order for this organization/infrastructure to be truly successful and transformative, it will be essential that its efforts are entirely focused on combating Alzheimer's disease. This will provide a uniquely focused organization that will have the most chance of success. A similar "disease-focused" agency was created in 1988 for HIV/AIDS entitled the "Office of AIDS Research" (OAR) within the Office of the NIH Director, that played a key role in successfully coordinating the federal response to AIDS. The NIH Revitalization Act of 1993 strengthened the OAR, providing it with increased authority in the planning, coordination and evaluation of AIDS research. If we are truly serious about transforming Alzheimer's research and achieving the goals laid out in the Framework, a similar type of organizational structure (perhaps an Office of Alzheimer's Research?) is required.

Thank you for the opportunity to provide input into the Draft Plan to Address Alzheimer's Disease! Please contact me directly if you have any questions regarding the issues I have addressed here.

Sincerely,

Bruce Lamb, Ph.D.Staff ScientistDepartment of Neurosciences The Lerner Research InstituteThe Cleveland Clinic FoundationCleveland, OH

ATTACHMENT:   Golde et al 2011.pdf

Available as separate links:
Right Sizing Funding for Alzheimer's DiseaseRight sizing funding for Alzheimer’s disease

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 13, 2012

SUBJECT:  National Plan to Address Alzheimer's Disease

As a geriatrician for many years, my only comment is that unless this education, training, etc. with a focus on such a prevalent disease, is started early on in medical school, PA, Nursing school, etc. and fully integrated into post graduate training for internal medicine, family medicine, internships, practicums, etc. not much will change. Unless academic medicine has a reason to buy in, we will continue to have medical providers lacking knowledge and skills in these areas. We may need more a focus on this for mid level providers since general internal medicine and family medicine are slowly declining in our health care system.

Nannette Hoffman

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DATE:  January 13, 2012

SUBJECT:  Comments on Alzheiner's

There is an ongoing focus on curing AD, However, with the continued emphasis on "cure" the immediate need is often overlooked or minimized. The actual beneficial need is for relief early on so as to increase the probability of quality of life for the individual AND the designated caregiver.

Even with the great promise shown in early trials J-147 will take years to come to market in approved use. There are several genuine advances that hold much promise yet they do not address the needs of the moment. Consideration must be given to those individuals and their loved ones suffering with this debilitating malady right now. As a civilized society we cannot stand idly by as we wait for a "cure" we must act with what will be of benefit today and improve the quality of life for those unfortunates. How can one not justify this morally and ethical position?

Florida currently has more than 10 percent of the reported AD population in our Nation. The impact on caregivers is staggering. There are more qualified AD facilities than any other state. The fact that this huge increase in AD confirmations is real and factual.

What is of great need is the early screening and detection of AD at the earliest possible stage. For many reasons this is not being emphasized, due to stigma or denial or other reasons. By placing an emphasis on early detection through education and PSA's (all media has a provision for such) highlighting local community screening facilities there will be an early means of detection and increased quality of life for all concerned.

We must take advantage of currently available meds for relief TODAY as the cure is remote and in the future. The acknowledged treatment of Aricept in conjunction with Namenda offers relief at present time. At least this will furnish an improved condition for the individual so diagnosed.

It is projected that the number of diagnosed AD patients could increase by 50% through the widespread availability of early screening that would lead to official diagnosis. With the advent of the "boomer" generation becoming into the known range it is felt that this is mandatory in order to provide relief for the coming wave of incidents.

Elder Care Advocacy of Florida has been long involved in this battle and participated in numerous seminars and panels over the years. As an effort with much experience it is felt that we must consider the needs of the "here and now" while we await further advancements in research and medical trials. We have had all too many friends and associates pass from this mind=robbing and life destroying disease that steals the very soul of our fellow loved ones.

The opportunity to be of service is always appreciated.

Austin R. Curry,Executive DirectorElder Care Advocacy of Florida

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DATE:  January 12, 2012

SUBJECT:  Please allocate more money now...let's lolve this by 2020 or looner

This is an important step in the fight to cure Alzheimer's. More money allocated for research and the development of drugs to cure the disease will lessen the huge toll on our health system if nothing is done. Sometimes you have to pay up front to avoid even more cost in the future. My dad is currently at mild stage and it is doubtful anything new will help him. But there are millions of other people that will benefit. Let's fight to keep another family from going through this atrocious disease.

Sincerely,

Marianna L. Kersey

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DATE:  January 12, 2012

SUBJECT:  Comment

Thank you for your work on Alzheimer's Disease and related dementias. Please note that I support a more ambitious date than 2025 to prevent and effectively treat Alzheimer's Disease. This date affords no hope for those who are recently diagnosed and their loved ones. Alzheimer's was first identified in 1906; I believe we have the capacity to END Alzheimer's by 2020; we cannot afford to wait more than a decade to achieve this goal. Please revise your target date and give hope to the millions of Americans suffering from mild cognitive impairment, early onset Alzheimer's, and other devastating dementias.

Lynda Everman

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DATE:  January 12, 2012

SUBJECT:  Supporting the concerns of Dr Wyman

Why no psychology? See below

"I learned about this call for feedback earlier today via a different listserv. Comments on that listserv made me curious enough to read through the draft. I was surprised when I realized that the words "psychologist" or "psychology" do not appear once in the Draft of the National Plan. Psychologists are not listed as one of the essential disciplines under "Goal 2," though many of the services that we provide are noted as vitally important to focus on in the coming years. I see this as a serious error - not because of my desire to protect the "turf" of psychology, but because it simply does not reflect the reality of healthcare today for persons with Alzheimer's Disease. HBPC is but one healthcare setting in which psychologists play an important role in the care of these patients - not to mention the many, many psychologists conducting research in this important area.

Thanks,

Mary F. Wyman, Ph.D.Clinical Psychologist, Home Based Primary Care"

Jan Stephen Cavanaugh, Ph.D.HBPC PsychologistGeriatric and Extended Care Service/HBPCChair, VISN 6 Dementia CommitteeFayetteville, NC

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 11, 2012

SUBJECT:  Comments on Draft Framework for the National Plan to Address Alzheimer's Disease

I would like to provide comments on the Draft Framework for the National Plan to Address Alzheimer's Disease (AD). I appreciate the efforts to develop a national plan for most effectively addressing AD. The overall goals of the Plan are important, but they seem to focus more on medical aspects of dementia and focus little on psychological, behavioral, and functional aspects of dementia. In particular, a greater focus on promoting each of the following is critical for more fully addressing AD and its impact: (1) research and practice related to psychological interventions for managing behavioral sequelae of dementia; (2) research on approaches designed to maximize independence of individuals with dementia, including residing at home (which I think is increasingly going to be the trend in the future); (3) research on and demonstration of innovative care settings for individuals with dementia and severe behavioral or mental health issues. In addition, psychologists are conspicuously absent in the section on building a workforce to provide high quality care to individuals with dementia, though psychiatrists, social workers, neurologists, and others are specified. Psychologists are essential to the assessment and management of AD and many co-occurring conditions and work as core members of interdisciplinary teams in a wide variety of clinical settings that provide care to individuals with AD. Furthermore, in the Veterans Health Administration (VHA), psychologists work as integral, full-time members of each (130+) Home Based Primary Care team that provides care to Veterans in their homes, some of which have AD or other forms of dementia. Accordingly, the specification of psychologists in the Plan as an important part of the workforce for effectively treating AD and for focused recruitment efforts is strongly recommended.

Thank you for your consideration of these comments.

Sincerely,

Bradley E. Karlin, Ph.D.National Mental Health Director,Psychotherapy and PsychogeriatricsOffice of Mental Health ServicesVA Central OfficeWashington, DC

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DATE:  January 11, 2012

SUBJECT:  Draft framework for the National Plan to Address Alzheimer's Disease

First of all, I would like to commend HHS for proactively working towards a comprehensive plan to address the personal and public impact of Alzheimer's disease. This plan is needed to ensure that there is proper allocation of resources to address dementias both empirically and clinically.

I was surprised to find that the plan did not mention the field of Psychology. Psychological researchers have played an integral role in the knowledge base on dementias and have developed diagnostic tools which are highly specific, yet cost effective. Furthermore, Psychologists and Neuropsychologists are often called upon to make formal diagnosis of dementia, relay this diagnostic information to patients and families, provide psychoeducation and support, assist with advanced care planning, assist teams/families in identifying and using non-pharmacological strategies for managing difficult behaviors, and provide services at the end-of-life.

As a Psychologist within the VA healthcare system, I provide such services within our Community Living Centers (i.e., nursing homes). Psychologists are specially trained to understand the psychosocial factors impacting older adults, as well as cultural/diversity impacts. As such, Psychologists are poised to deliver high quality assessment and intervention services to persons with dementia and their families. Furthermore, Psychologists have unique skills in assessment and program evaluation which allows us to monitor and measure our work in a way that can be directly linked to cost savings. I have seen how Psychology's presence on the CLCs has led to more positive outcomes, such as the significant reduction of use of antipsychotic medications, reduced caregiver burden, improved mood functioning for patients, and reduced strain on staff.

The exclusion of Psychologists in this framework could have detrimental financial impacts on our ability to provide these services in the future. I strongly believe that the elimination of Psychology from the interdisciplinary teams serving dementia patients would have dire effects on the provision of quality care.

I appreciate your strong consideration of including Psychologists in this framework.

Sincerely,

Erin L. Patel, Psy.D.Clinical PsychologistPsychology ADPAC- York CampusTennessee Valley Healthcare SystemAlvin C. York VAMCMurfreesboro, TN

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 11, 2012

SUBJECT:  Comments on National Plan for Alzheimer's

I am encouraged by the effort. However is several off the goals a key player to support for early to middle stages of the disease is Assisted Living and Assisted Living special care units. There is no mention within the plan about specially designed units that provide support to the people with this disease. They are often less restrictive and provide programming to enhance quality of life. It would be helpful to have guideline regarding quality of life issues for the resident in Assisted Living (residential care), Special care units and nursing homes

Thanks for your work. This coordination will benefit many over the next 10 years

Sharon RisserOwnerAssisted Living with a Special Care unit

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  January 11, 2012

SUBJECT:  Comments - "Draft Framework for the National Plan to Address Alzheimer's Disease"

Thank-you for the opportunity to suggest several minor enhancements to the "National Plan to Address Alzheimer's Disease."

The third sentence of Goal 2 to "Enhance Care Quality and Efficiency" should be edited as follows, to be inclusive of the 114,000 secured Assisted Living settings in the US that provide specialized programming and care for those with various forms of Dementia and Alzheirmer's (data source, National Investment Center, http://www.nic.org/research/faqs1.aspx):

High-quality care should be provided from the point of diagnosis through the end-of-life and in settings including people's homes, doctor's offices, hospitals, licensed assisted living communities and nursing homes.

Including this reference will balance the fact that the only other current reference in this document to the Assisted Living industry is within the context of abuse in Strategy 3.D.

The wording in Strategy 3.D provides information, but is not proposing any changes or enhancements to minimize the abusers or to properly recognize that the vast majority of those providing care for individuals with Alzheimer's and related dementias do "maintain the dignity, safety, and rights of peoples with Alzheimer's Disease." I propose the following wording enhancements:

People with Alzheimer's disease are particularly vulnerable to financial exploitation, physical or emotional abuse, and neglect both at home and in institutional care settings residential care facilities.18 Reports of elder abuse are handled by state Adult Protective Services, which is charged with responding to and resolving alleged abuse. State survey and certification agencies investigate abuse in licensed facilities, which may include nursing homes, assisted living facilities and board and care homes. AoA's National Long-Term Care Ombudsmen are advocates for residents of nursing homes, board and care homes, assisted living facilities, and similar adult care facilities and can help address issues related to potential abuse or neglect. National trend reporting of substantiated cases of abuse or neglect for those with Alzheimer's by care setting type, as a percentage of total residents cared for, should be enhanced to better inform the public of those settings most likely to provide the type of care and support expected and the low incidence of this type of abuse.

Please let me know if you have questions that I may be of assistance with or need a clarification related to my suggestions for improving your plan documents.

Roger ThieleVP Marketing and Product Line ManagementBrookdale Senior LivingBrentwood, TN

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