2013 Public Comments on the National Plan for Alzheimer's Disease and the National Alzheimer's Project Act

07/01/2015

Table of Contents

DECEMBER 2013 COMMENTS

NOVEMBER 2013 COMMENTS

OCTOBER 2013 COMMENTS

SEPTEMBER 2013 COMMENTS

AUGUST 2013 COMMENTS

JULY 2013 COMMENTS

JUNE 2013 COMMENTS

MAY 2013 COMMENTS

APRIL 2013 COMMENTS

MARCH 2013 COMMENTS

FEBRUARY 2013 COMMENTS

JANUARY 2013 COMMENTS


DECEMBER 2013 COMMENTS

DATE:  December 3, 2013

SUBJECT:  NAPA Public speech

Attached is my speech from yesterday for the public record. It was nice to see you all yesterday and I really liked the accommodations. For me it made it so much better to be in the middle so I could get a better view and clarity of who was speaking. Thanks so much for you offer to read my next speech. I wish you a very safe and wonderful holiday season.

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

ATTACHMENT:   NAPA Speech Dec 2 13 updated.doc

Available as separate links:
December 2013 Advisory Council Meeting Comments December 2013 Advisory Council Meeting Comments

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NOVEMBER 2013 COMMENTS

DATE:  November 19, 2013

SUBJECT:  G8 Dementia Summit

Alzheimer's Research UK is preparing for the exciting opportunity put forth by UK Prime Minister David Cameron with the organization of a G-8 summit on dementia this December, and we would like to use the opportunity to reach out to the other participants. If possible, would you provide me with a contact at HHS who is involved with the summit?

Thank you so much!

Katy Schneider Public Affairs Officer Alzheimer's Research UK Great Abington, UK

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OCTOBER 2013 COMMENTS

DATE:  October 29, 2013

SUBJECT:  The taboo topic

Today -- the taboo topic of when and how to die with dementia on Alzheimer's Speaks Radio. Please listen to the very important conversation. This is an area we all need to understand. Learn new things

http://www.blogtalkradio.com/alzheimersspeaks/2013/10/29/life-or-death-with-dementia--the-taboo-conversation

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

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DATE:  October 29, 2013

SUBJECT:  CFPB's New Free Guides on Managing Someone Else's Money!

Millions of Americans are managing money or property for a family member or friend who is unable to pay bills or make financial decisions. This can be very overwhelming. But, it's also a great opportunity to help someone they care about, and protect them from scams and exploitation.

Today the Consumer Financial Protection Bureau (CFPB) Office for Older Americans released four easy-to-understand booklets to help financial caregivers. The Managing Someone Else's Money guides are for agents under powers of attorney, court-appointed guardians, trustees, and government benefit fiduciaries (Social Security representative payees and VA fiduciaries).

The guides help people acting as fiduciaries in three ways:

  • They walk them through their duties.
  • They tell them how to watch out for scams and financial exploitation, and what to do if their loved one is a victim.
  • They tell them where to go for help.

The guides are available to download on the CFPB website at www.consumerfinance.gov/managing-someone-elses-money.

You can also order free print copies at http://publications.usa.gov/USAPubs.php?NavCode=K&searchText=CFPB and free bulk orders at http://promotions.usa.gov/cfpbpubs.html. (These hard copies will be available sometime in November, after delays due to the federal government shut-down.)

Please reach out to me with any questions! Several of the EJCC member agencies are posting the guides—or links to the guides—on their websites and otherwise publicizing them. We would be thrilled if all of our partners on the EJCC would do so—and we would be happy to participate in webinars, trainings and conferences to get the word out. Please let me know your ideas for getting these to the consumers who need them.

Thanks

Naomi Karp, JD Senior Policy Analyst Office for Older AmericansConsumer Financial Protection Bureau

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SEPTEMBER 2013 COMMENTS

DATE:  September 20, 2013

SUBJECT:  Villa Gardens letter to MOC

Chick Nelson asked me to send you a copy of the letter that the Villa Gardens Senior Advocates Committee sent to Congressmembers Chu and Schiff and Senators Boxer and Feinstein. It is attached.

Regards,

Edith GradyPasadena, CA

ATTACHMENT:   VG SA NAPA letter to MOC 9.6.13.doc

Available as separate links:
Villa Gardens Retirement Community NAPA Comments /pdf-document/senior-advocates-committee-villa-gardens-retirement-community

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AUGUST 2013 COMMENTS

DATE:  August 4, 2013

SUBJECT:  ALZHEIMER'S

I think we are a long way off from finding a cure. In the meantime, we could focus more on humane, kind care for these people who are afflicted. I cared for my mom over 10 years the last 5 in a nursing home. My mom got the care she deserved because I saw to it and it helped that I am a nurse. At this time, there is no mandatory training on caring for people with dementia and I saw the results. There are wonderful programs available but nursing homes do not put them into practice as it costs money.

Sheila Mead

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JULY 2013 COMMENTS

DATE:  July 29, 2013

SUBJECT:  Caregiver Perspective

I hope your summer is going well! I wanted to share a link to my latest blog in the hopes that you will pass it along to the Advisory Council: http://www.leadcoalition.org/2013/07/the-invisible-victims-of-alzheimers-disease-family-caregivers/.

Many thanks,

Mary Anne Sterling, CEA Co-founder http://www.connectedhealthresources.com

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DATE:  July 26, 2013

SUBJECT:  Alzheimer's Data Resources

As I mentioned last week, CMS, in conjunction with the department's MCC initiative, has released new data on chronic diseases that might be helpful to Advisory Council members and stakeholders.

The CMS Chartbook: 2012 [http://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/Chronic-Conditions/2012ChartBook.html], CMS State Reports [http://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/Chronic-Conditions/CCStateReports.html],CMS County Reports [http://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/Chronic-Conditions/County-Reports.html] and the CMS Chronic Conditions Dashboard [http://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/Chronic-Conditions/CCDashboard.html] include data on patterns of chronic conditions and MCC among Medicare fee-for-service beneficiaries at the national, state, and county levels. In addition, the Dashboardprovides data for specific Medicare beneficiary sub-groups, according to gender, age group or dual eligibility status. Alzheimer's specific data is available in all of these tools.

Anand Parekh

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DATE:  July 24, 2013

SUBJECT:  Permanent link for driving with dementia

You really need to hear this. This is will help so many. Please make this a permanent link on your site for those who need to learn about when one should stop driving because they have dementia. This is such an important topic. Thanks

http://www.blogtalkradio.com/alzheimersspeaks/2013/07/23/driving-and-dementia-a-variety-of-experts-speak-out-1

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

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DATE:  July 20, 2013

SUBJECT:  NAPA comments

Below are my comments for the public record. If you can group this with the earlier files I sent you that would be great. This being first. Thanks

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

==========

Some comments on the earlier topic on CMS.

In reference to the availability of PET Amyloid scans.

I think it is very important to the outcome of people like me to these tools.

For me it took 9 years to get a diagnoses. It was not until I received the PET scan that it confirmed that something was truly wrong. Many insurance companies still do not pay for that test. I cannot begin to tell you how many times I had repeat many of the test hoping for an answer. I even had 3 Neuropsychological tests that cost over $2500.00 each during that time.

Because of this diagnose.

I was able to start my medications.

Start my end of life planning and make plans to live life to the fullest in the short time I had left.

Able to get in Clinical trials

Apply for disability

Able to now focus my effort to being an advocate for the disease which had now given me a new life's purpose.

When I need surgery the doctor was able to avoid anesthetics contraindicated in AD.

The delay in my diagnose led to being fired from my job and losing the very benefits I had contributed to that would have taken care of me for the rest of my life. It would have even simplified it for my caregiver. Now we both suffer. I lost it all and must rely on social security.

I would like to personally thank this advisory council for supporting the Department of Health and Human Services decision to include someone living with dementia on the committee. I believe people around the world will view this as a major step forward for people with dementia. Ideally this should set an example to be followed by all people, businesses and organizations. While we may have a progressive disease we still have a lot to contribute to society if we are just given the chance. It is decisions such as this that will help reduce stigma, and prove to people what we are capable of doing. I speak for myself and many others when I say thank you so much.

As some of you know I have been appointed to the PA State Alzheimer's Planning Committee. I was very excited by the feedback I received after the first meeting on the commitment to make the plan successful before it was even discussed or even created. I wish I could be as excited about the work being accomplished here at NAPA. While there are great ideas coming from all of you, and plans and polices are being created, there is still a distinct lack of funding. Many of you here have the power to influence those who are in a position to increase funding; I encourage you to do more. We are all aware that Alzheimer's is the most expensive disease of the century, more than heart disease and cancer, yet the leaders chose to do nothing, in effect ignoring those of us who are dying in the most horrible way possible. The funding that we have for this disease is even less today than before; we are heading the wrong way. Many people get excited by the comment on proposed budget increases; people like me only get excited on the actual budget changes. Budget proposals are even more disappointing than the failure of clinical trials.

For some time I have worked on putting together a vision of what people with dementia need. I believe many people have an idea of what is required, but I feel the best ideas come from those directly impacted by dementia because those of us who are living with dementia know how we feel, and what we need. My vision has been shared with the PA state, and I have sent a copy to all those on the NAPA Advisory Council. It is my hope that this document becomes shared with all the states and other parts of the world. I would also be more than happy to expand on the reasoning behind what I came up with and why I felt it would be a benefit to not only the people living with this disease but also their family and friends. I hope you take what I have written and use it as a guideline for what is needed and you create a model of best practices for others to use.

Below is a list of issues as I see them from my introduction statement on June 7th that I shared with the PA state committee.

In my opinion awareness is the biggest problem. The face behind the disease must change if we are going to get the public engaged. We must show that Alzheimer's is a disease that affects all ages; it is not just associated with getting older. I know of a 30-year-old, and a 29-year-old who have it.

Stigma of the disease must be eradicated.

Companies and communities must treat this like any other disability.

State laws need to change so those who are getting fired can collect the benefits they deserve immediately.

Once we have a diagnosis, we should all be entitled to the same level of benefits no matter what our age is.

People should be fast-tracked for social security instead of being treated like crooks while they are getting deeper into hardship.

First responders need educating, and a system needs to be created that will help identify us without becoming a target for others.

We need a way to deal with our guns.

Driving laws need to change to remove the licenses of those who are no longer capable, and not to impact those that are still able to drive.

Health providers and institutions must change in many ways if we are looking to make it better for those impacted.

Need to encourage dementia-friendly communities and businesses.

We must be able to live life to the fullest even though we have the diagnosis.

Having a diagnosis of dementia does not mean we lose our willingness or motivation to be contributing members of society. We need opportunities to engage in meaningful activities throughout the course of the disease.

We must encourage the research and provide funding.

Trials need to provide more flexibility by using communication technology.

Family savings should not be wiped out just because one has dementia.

Patients should be made aware of the living wills which should be very different for those with AD. While this is a taboo subject we should have the right to end our life in a dignified way. We must talk about these issues.

I hope you will now look at my vision and give it consideration.

I thank you for your new and improved plan, but we are far from being able to take a bow for any real credit. So much more must be done.

I'd like to thank the Alzheimer's Association for making it possible for me to be at NAPA.

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DATE:  July 17, 2013

SUBJECT:  NAPA

Distribution to: NAPA Commission ABA Commission on Law and Aging NAELA Alzheimer's Organization

Re: Recommendations for a National Uniform Law Regulating Elder Facilities, Court PrefilingMediation of ADRD Family Caretaker Responsibility and Compensation, Amendment to the SSA on Caretaker Disability Entitlement and the establishment of a World Alzheimer's Institute

I have reviewed the NAPA Plan, as updated, and thank the Alzheimer's Organization for its awareness efforts. Consolidated informal comments and recommendations from caretakers, attorneys and health care professionals follows. I thank NIH for its continuing publications on clinical trials and health related issues and the FDA for its oversight function and providing assistance to caretakers filing notices of clinical trial mismanagement. Specific recommendations fully within NAPA authority are contained at the end of this statement.

I am an attorney who has been in the Alzheimer's trenches for fifteen years. We had a triple dose of this insidious disease in my extended family. I handled a level 6 case 24/7 for ten years. During this period and continuing post DOD, I remain committed to interdisciplinary research from the progression of clinical efforts to find a cure to identifying ways to improve the quality of life of those afflicted with Alzheimer's in the absence thereof. I retain an ongoing interest in the welfare of the hundreds of caretakers I have met over the years and concern with the inevitable ruinous impact of this disease on the next generation.

The industry report on AD entitled "Alzheimer's Drugs Market, 2012 - 2017 was issued in May 2013. It is a comprehensive document which the extensive outline, (including mention of NAPA) clearly demonstrates with key objective to establish the likely evolution of leading drugs, generics and launch of new drugs across the different regions in the world. I watched the NIH sponsored Alzheimer'sDisease Research Summit 2012: Path to Treatment and Prevention in real time, paid particular attention to counsel and came away with no hope of cooperation for obvious proprietary legal intellectual property and economic reasons which are without the control of the NIH. In fact, it appears that the scope of any cooperation is extremely sensitive since even the appearance of infringement could result in litigation which holds up distribution of a viable curative pharmaceutical indefinitely.

There is some disappointment with a few NAPA initiatives perceived as a disservice to victims of ADRD without a voice who are pleading for protection and to the caretakers who give up everything to provide support.

I don't see the DOJ, the FDA or the IRS and United States Patent Office on your federal agency list? I don't see the ABA Commission on Aging/NAELA charged with a NAPA mandate to address legal issues in this area. Perhaps you need a broader resource base. Everyone wants to help.

As to the alzheimers.gov, you have a list of drugs on your site for ADRD care. The FDA has stated that certain drugs are contraindicated with elderly with dementia and are in fact life threatening. Would you please coordinate your representations with the FDA before another elderly person is seriously hurt? Regardless of the $100 million False Claims Act charges and sanctions against J&J relating to Omnicare bribery, either these drugs are approved for use by the elderly ADRD or they are not. Clarification would be helpful.

ADRD population

There is a concern that first, the base from which linear extrapolations have been made as to the number of ADRD is not statistically significant and existing and future service delivery needs will therefore be underestimated. We are not supporting the caretaker population, estimated at 25-30 million, directly or by providing adequate support for prevention of facility neglect and abuse so alternatives to home caretaking will be available.

What will the future hold for high school and college students who justifiably want to know whether and why they should invest in their future if everything is going to fall apart with 50% of the future population ADRD caretaking? At minimum, ADRD educational/training materials should be made available through the state library systems so caretakers/children will have easy and immediate access to free resources.

Second, taken to the extreme, without resolution of the causation issue, does the potential for prion scabie migration/replication through surgical equipment and water supply raise the potential for contagion and exponential as opposed to linear expansion of this population? There are patents available which deal with prion destruction in surgical equipment sterilization not currently accomplished with traditional techniques. Is it possible to address these concerns?

Social Security Disability and Caretakers

The SSA discriminates against caretakers of ADRD as a class in denial of disability benefits. The theory of liability as to the SS is unjust enrichment No one wants to see this mushroom into a class action but if this injustice is not rectified, another forum for redress will be pursed.

Caretakers of Alzheimer's patients, who collectively save the government billions of dollars are (1) denied Social Security disability benefits, no matter medical conditions which would otherwise justify entitlement or prior contributions to Social Security, usually spanning decades, because of the time restricted credits contribution prerequisite to qualification, (2) further penalized by reduction in future social security benefits by inability to contribute during the protracted caretaking period which often consumes what would have been the most economically significant period of their lives, and (3) denied unemployment benefits.

Caretakers do not receive compensation (or later assert unjust enrichment claims against the estate) because of (1) insufficient resources, (2) family dissension, (3) exhaustion, and/or (4) a general feeling of obligation toward the afflicted parent or spouse which would make taking compensation for caring personally offensive. They are usually unaware of the loss of disability benefits for failure to contribute during the caretaking period, have no idea of the potential for their physical harm and immune system collapse from the disease or are unable to do anything about it. They can lose income, savings, assets, and children's college funds during a caretaking period which can continue for ten years or more.

Many of us started caretaking in the 90's when we were in our 40's and continued through our late 50's. There is no way to accurately convey the absolute shock of initial ADRD diagnosis and the immediate and complete upheaval and destruction of finances, health, and professional and personal life. The unrelenting stress of the behavioral challenges of this horror of a disease, ongoing sleep deprivation occasioned bysundowning and the sporadic and unpredictable agitation/violence which can result in actual physical injury to the caretaker are not the only challenges. The caretaker must deal with non ADRD medical conditions attendant to the aging process.

Spouse caretakers usually predecease the AD patient since the stress of caretaking destroys the immune system. If children take on the responsibility they are similarly affected. Although ADRD manifests itself differently in each individual, the one common thread is the impact on the caretakers. They deal with the protracted trauma of losing the essence of their loved one years before the actual physical death. At best, if a personal caretaker, at the end, they are old, they have lost their professional marketability, they don't have the physical strength or emotional stamina to pick up their lives and they are usually medically in trouble.

The experience is not unlike PTSD and the caretaker has become the patient without a caretaker.

At that point, caretakers are advised that, not only is the enrichment of SS by their efforts not acknowledged, but they are penalized by SSA for the caretaking period in the denial of essential benefits. This injustice needs to be addressed and rectified through (1) amendment to SSA disability prerequisites relating to entitlement based time restricted contribution period for ADRD and other caretakers, or (2) a class action against the SSA for unjust enrichment of the fund attributable to private caretakers efforts and in the denial of benefits to caretakers who would otherwise qualify for disability.

Court Mediation Services on Caretaker Responsibility and Compensation

In recognition of the statistically significant percentage of the future generation who will be full time caretakers of ADRD parents, disputes as to responsibility and compensation for care whether during the life of the ADRD patient or as to unjust estate enrichment for uncompensated services provided as a post DOD claim thereafter, will impose an overwhelming burden on the courts.

There is an immediate need for the state courts to make available, publicize and encourage prefilingcourt mediation of any and all family/beneficiary disputes relating to care, including caretaker compensation, whether continuing during the term of the caretaking or post DOD in estate distribution, immediately on diagnosis or indication of need, and reducing same to written agreement. In the absence of such agreement and to the extent this becomes an estate issue, mediation should immediately follow the assertion of an unjust enrichment claim by the caretaker.

When care facilities are undesirable or financially impractical, the burden falls on the family particularly in the case of ADRD where 24/7 care is involved. In many cases, qualified at home care providers are not available or are unwilling to do AD because it is just too hard. The comment I received from an agency representative was "life is too short". Unqualified at home care providers pose a danger to the patient.

There is a saying in the AD community that "there is always one" (family member) who assumes primary and often sole responsibility for care. Most family disputes are based on allocation of caretaking responsibilities and compensation. Family members may refuse to participate except when their financial interests are concerned at which time they become highly active. Caretakers struggle to find time to sleep much less take on a court battle for compensation particularly when liquidity is limited, they have already lost their income and the only asset is the home.

Absent agreement or early court intervention, an unjust enrichment claim may be asserted against the estate post DOD. Historically these were difficult because there was a presumption that family caretaking should be gratuitous. However, recently and thanks to the Alzheimer's Organization, the nature of ADRD and the demanding nature of the care is receiving international public attention. Courts are now recognizing this claim in ADRD cases and some states have passed laws specifically providing for caretaker compensation.

Provision for special needs or other trusts may not be available or have been addressed in many of these cases. This goes further. Caretaking is sufficiently traumatic without family dissension. Early, expeditious and affordable recourse is essential. Mediation provides it.

The ABA Commission on Aging/NAELA should draft a uniform national law regulating facilities and employees. License should be conditioned on compliance or relinquish entitlement to federal and state benefits/subsidies.

There is an absolute necessity for a national uniform statute/regulations for state enactment regulating ECC, ALF's and SNF's, otherwise conditioning the provision of federal subsidies and benefits on facility compliance and providing stringent sanctions for violations, not only as to the facility, but as to participating health care professionals.

The ABA has successfully taken on uniform national laws in the past and it is particularly critical here. The attorneys from the ABA Commission on Law and Aging/NAELA have the talent and the experience in the trenches of facility abuse to handle this issue. If NAPA fails to give a voice to elderly ADRD through strong advocacy and protection of their interests, they will have failed their mandate.

The Miami Herald issued a three part investigative report in 2011entitled, "Neglected to Death" http://www.miamiherald.com/neglectedtodeath/index.html#morer This is essential reading for anyone in this field. The Nursing home abuse blog and other resources provides an overview of, for example Emeritus (California - wrongful death, Florida - bed sores, medication misadministration and falsification of medical records etc. etc.) Usually the response is simply to convert to a lower classification of care (independent living) to circumvent future state oversight. The Florida legislature has twice failed to enact legislation to remedy abuse. The industry is now attempting to enact legislation in Florida which will make it more difficult to sue for abuse.

With advance apology to truly outstanding health care professionals delivering quality care, caretakers do not place their loved ones in facilities because the (1) the health, safety and security of the ADRD cannot be assured in substandard, understaffed facilities (2) there is excessive doping (chemical restraints) to compensate for inadequate staffing, (3) the facilities do not take high level ADRD without a 24/7 private aide making it a cost prohibitive venture, (4) Medicaid beds are not made available to ADRD unless the condition developed post initial admission, and (4) the state is lax or nonresponsive in enforcement.

Please understand our collective, absolute fury with your "15%" reduction in doping and demand for clarification. This is a civil rights if not a criminal battery issue. It is not subject to arbitrary and callous treatment as an administrative efficiency issue. Visit an AL or SNF and speak with families and attorneys who specialize in this field. Look at your own deficiency reports on the 620 nursing facilities in Florida alone and the court abuse claims against assisted living facilities. There are a substantial number of attorneys in the ABA Commission on Law and Aging/NAELA who would be happy to provide education.

When elderly are ignored or have ADRD or are otherwise doped with off label drugs for behavioral control purposes, they cannot articulate pain. It is a form of involuntary imprisonment not unlike the Argentinean prisons in the 50's which used a rudimentary form of psychotropic drugs on inmates. (In Florida, drugs are also being used on juvenile detainees to control behavior.) If elderly ADRD are doped when they act out and they act out because they have untreated cancer or undiagnosed medical condition which they are unable to communicate, they face years of pain in a semi comatose condition before their life ends strapped in a wheelchair or urine soaked bed without relief. There is an urgent need for immediate action. This conduct is criminal and should be treated as such.

Which 8.5% of this group are you comfortable abandoning?

We had three experiences with respite in ten years in two high level SNF's and one hospice, each stay under two weeks. The first resulted in a hip fracture with the elderly woman in the next bed in the same condition. (The other woman was given haldoland cried for hours.) The second stay resulted in extensive bruising, a cut on the forehead and a hematoma on both arms. The hospice, situated in a hospital, was advised preadmission that the ADRD could not call for help and, as a fall risk, did not need diapering but needed a commode next to the bed which she could utilize. They put her as far away from the nursing station as possible in a room with a woman who was incapable of any communication, put her in diapers she would not use and put the side bed rails up. Within 8 hours of admission, she had fallen attempting to get out of bed to go to the bathroom and had ripped open her leg about 10 inches. When I arrived at 5 am, she was bleeding on the bed. (My father entered a hospital without a mark on his body and was discharged with a stage 3 decubitus with MRSA on his coccyx.) All of this has to stop now.

To the extent doping, neglect and abuse is not rectified, elderly will continue suffering and families will forfeit their livelihood, savings, children college funds and quality of life to keep their loved ones safe at home. Please do not make it the policy of NAPA to tolerate any form of institutionalized abuse.

Many facilities are not capable of or are unwilling to provide essential services to insure the safety and care of their elderly residents. There are too many profiteer operators opening what are essentially extended stays with food service, mandating understaffed facilities to achieve a substantial owner benefit/ROI without regard for the quality of life of their residents.

There is an absolute necessity to continuously inspect and severely economically sanction those substandard facilities which harm the elderly. Take action to discipline or revoke the licenses of operators and staff that participated in or were aware of violations or falsified records and failed to report same. Similarly, federal or state trustee supervised independent contractor assumption of operational activity should be provided to bring a facility into compliance with the cost of same borne by the owner/operator. Sanctions should be automatic and not negotiable.

The foregoing does not overlook and in fact should aggressively pursue actions for assault, battery, criminal negligence and endangerment, pain medication theft and financial abuse as appropriate through the prosecutor, not the ombudsman, who, in turn, should immediately notify all concerned federal and state concerned authorities of the pendency of any investigation and subsequent charges. I have discussed this matter with major city police from San Francisco to Boston and they have horrifying tales.

This industry is unable to regulate itself. The recent ALA request for state plans was disappointing. Florida ALA declined to do its own report and adopted the Texas plan. None are particularly effective in addressing resident issues if reform would economically burden the owner.

The uniform national law act should set forth, with specificity, optimal minimum standards for facility operation including but not limited to

  1. Qualification and licensing of owners/operators (in Florida you need high school to operate an ALF),

  2. Minimum facility per patient staffing,

  3. Background investigation, qualifications and training of staff,

  4. ALF classification of care, as it currently exists, should be eliminated in its entirety,

  5. Explicit verifiable protocol for the prescription and administration of medication for ADRD as to nature, duration and dosage, documentation of use of off label drugs and physician (not nurse) justification for exceeding any recommended dosage or duration of administration after seeing the patient.

  6. Program of cognitive/sensory activities for ADRD. Identification of advanced cognitive conditions which mandate immediate facility release and transfer to a specialized facility dealing with memory care or to a SNF if attendant medical issues, (The advent of IPADS and touch screens opens new door in this area for ADRD who could not negotiate a mouse)

  7. Prior court approval (after family and beneficiary notice) of any gift, behest, testamentary or other property transfer to a facility or any of its employees,

  8. Provision of distance web cams to permit HSC and staff monitoring of their charges, particularly in the case of ADRD. There is ample evidence to suggest that when staff are under surveillance, abuse abates.

  9. Heat sensoredmonitoring of fall risks and ADRD so movement leading to bed vacation at night can be identified by staff prior to injury or wandering and without alarms.

  10. Mandatory immediate notification to HSC of injury to patient.

  11. State of the art lifting devices/equipment to prevent staff injury have to be provided in each facility. Staff has a brutal experience lifting physically challenged/obese without injuring themselves. (Robots exist to deliver medication in hospitals. Cornell has a robot to take a beer out of the refrigerator deliver and pour it. Why not a robot to help? It has to be less in cost than repeated hip fractures, rehab and OSHA damage awards.)

  12. HCS's should be able to directly access the patient's records, including medication management and nurses notes through online interactive software access between HCS's and facility. No medication or medical treatment should take place without an HCS's consent. Interactions between medications or other medical conditions and side effects should be self contained within this data base, continuously monitored and addressed. There is no need for handwritten files which can be manipulated/altered pre inspection.

    I am an attorney who is aggressive in medication management and I quickly discovered that nurses resented any inquiry. This has to stop. We are HCS's and we need this information.

  13. There needs to be strict guidelines as to the use of the ombudsman function, the obligation of the ombudsman to immediately refer elder endangerment or possible financial abuse to the appropriate authorities and to advise HSC, POA and family of their options, including referral to counsel and a NAELA contact number or availability of court mediation services. The ombudsman role should be carefully redefined and restricted in scope to matters not possibly criminal in nature. (Some issues are just not appropriate for the ombudsman.)

  14. There should be an absolute prohibition of facility license downgrading to avoid continuing state scrutiny and oversight when the facility is faced with closure at the higher level.

  15. DNR forms and living wills have to be uniform nationally. (Florida requires the forms to be in a particular format on yellow paper?)

The WHO has declared ADRD as an international health crisis. International cooperation requires a different approach from the NAPA plan with consolidation and dedication of international resources solely to scientific research.

The World Health Organization calls on nations to recognize dementia as a global public health crisis. Nobel Laureate, Dr. Stanley Prusiner, immediate past Director of the Institute for Neurodegenerative Diseases at UCSF, and recently appointed Chairman of the Scientific Advisory Board at the Cleveland Clinic Lou RuvoCenter for Brain Health, along with The Fisher Center for Alzheimer's Research Foundation which funds the work of Nobel Laureate Dr. Paul Greengardand every other internationally prominent scientist considers Alzheimer's one of the most devastating and grossly underfunded illnesses affecting society and are staunch advocates of a significant increase in funding to make substantial breakthroughs.

A World Autism Center in Jerusalem is underway through the support of the International Center for Autism Research and Education, which is based in New York City. It plans to include a state of the art research facility, a "global platform" for field researchers, continuing education programs and "university level" courses on the condition. It will also have a residency program and will otherwise include advances in autism research including early detection. In other words, it plans to be the world's "largest multidisciplinary center for autism research, diagnosis, treatment and prevention."

A World Alzheimer's Center under the umbrella of the 78 nation Alzheimer Federation in affiliation with the WHO providing technologically advanced facilities for scientist and independent NGO research, as well as consolidation and development of available international resources and technology addressing cognitive challenges should be created. (See eg. Norway's Snoezalen rooms http://www.snoezeleninfo.com/main.asp, advances made by John Hopkin'sCopper Ridge, Melabev in Israel, the Fisher Institute at NYU, the University of Florida's Smart Room, games and brain training to name a few.)

While seed money could be provided through NAPA, this fund is insufficient to provide national support for ADRD research demands much less international efforts. Similarly, the Alzheimer's organization has its own challenges in infrastructure support particularly given the scope of their service delivery.

In June and July 2013, Tampa Bay Tribune issued an expose' of charitable industry abuse, misuse and outright fraud in solicitation practices. "America's Worst Charities" is the result of collaboration with the California Center for Investigative Reporting, the nation's largest and longest serving nonprofit newsroom dedicated to watchdog journalism. CNN joined the partnership in March. Reports indicate that even the best charities may have a solicitation/public relations cost of up to 40%. After that, take away the balance for infrastructure support which may still not be sufficient if labor intensive services are involved. How much makes its way down the pike to the victims? It is just an overwhelming struggle particularly in today's economy when governments are facing their own crisis. http://www.tampabay.com/topics/specials/worst-charities.page

In the absence of sufficient government appropriation and given the cost of fundraising/air time, a new vehicle to accomplish the $5-10 billion needed for ADRD research must be identified and pursued through the international community. It has been suggested (and inspired in part by Google's Razoo) that the search engines should be engaged as the only viable means of effectively coordinating, in every language, a coordinated time restricted massive campaign on the front page of the engines to elicit international financial support to expeditiously achieve essential support. Properly structured, the engines can slice through the overhead to accomplish direct benefit to scientific research in fulfillment of the intent of the donor and the international public trust through the Alzheimer's Federation of 78 nations in affiliation with the World Health Organization.

The current reaction to NAPA is that, despite the best intentions and through no fault, the current approach is underfinanced, piecemeal at best and holds no ascertainable hope of accomplishing an expeditious cure. You need a great deal of money and resources to save the next generation. If you want to accomplish significant goals, you have to put international firepower behind your efforts.

Thank you,

Patricia A. Murphy MPA JD

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

DATE:  July 15, 2013

SUBJECT:  

I hope you are doing well and look forward to seeing you on Friday. At my PA state Alzheimer planning committee today I shared the following documents. I am hoping this could become useful document for the NAPA Advisory Council. I would also hope you have a way to share this with all the states. This is a document that I have worked on for over five months and I have had input from many people and organizations in the dementia arena along with 15 other advocates who are dealing with dementia. If you should have any question please feel free to reach out to me. I would also be interested on your thoughts.

Thanks

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

ATTACHMENT:   Michael Ellenbogen's Dementia-Friendly Vision Cover page.docx   Michael Ellenbogen's Dementia-Friendly Vision.docx   Michael Ellenbogen's Dementia-Friendly Vision Outline.docx

Available as separate links:
Dementia-Friendly Vision for State and National Implementation Cover Dementia - Friendly Vision For State and National Implementation
Dementia-Friendly Vision for State and National Implementation Outline Outline of M. Ellenbogen’s Dementia - Friendly Vision For State and National Implementation
Dementia-Friendly Vision for State and National Implementation Michael Ellenbogen’s Dementia - Friendly Vision

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

DATE:  July 2, 2013

SUBJECT:  From NCCDP to Helen Lamont for July 19th 2013 NAPA meeting

Please provide the attached document for inclusion for the upcoming July 19th NAPA meeting. Thank you.

Sandra Stimson CALA ADC AC-BC CDP CDCM Executive Director/FounderNational Council of Certified Dementia PractitionersInternational Council of Certified Dementia Practitionershttp://www.nccdp.org http://www.nccdp.org/iccdp

ATTACHMENT:   nccdptoHHSregarding NAPAJuly5thdeadline2013.docx

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

JUNE 2013 COMMENTS

DATE:  June 17, 2013

SUBJECT:  Alzheimer's/dementia people can still think and communicate

Please share this document with all people who are in the dementia field. I think it is very important and we must change our ways of thinking. Please feel free to contact me should you have any questions on how I conducted my research. If there is a way for you to share this with all the people in the US who is in charge of the states plans that would be great. Thanks

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

ATTACHMENT:   My Theory of the brain an what I learned.docx

Available as separate links:
Michael Ellenbogen Comments on the Brain Michael Ellenbogen Comments on the Brain

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

DATE:  June 6, 2013

SUBJECT:  National Alzheimer's Project Act Question

Thanks for the recent NAPA update… when reading over the minutes I came across a research milestone of research that may be of interest to our small business. Can you tell me who is in charge of the "neuropsychological assessment measure research" initiative? (see below)

The 2012 research summit resulted in six categories of research recommendations:

  1. Interdisciplinary approach to discovering and validating the next generation of therapeutic targets for Alzheimer's disease.
  2. Challenges in preclinical therapy development.
  3. Whom to treat, when to treat, and what outcomes to measure.
  4. Drug repurposing and combination therapy.
  5. Nonpharmacologicalinterventions.
  6. New models of public-private partnerships.

Specific milestones were developed for each of these six recommendations. A chart (nih-napa-milestones-and-summit-recommendations-april-2013#milestone1) lists specific milestones and an expected time to complete them.

One of the milestones is to: "Launch research programs to develop and validate sensitive neuropsychological assessment measures to detect and track the earliest clinical manifestations of Alzheimer's disease. [Summit 3.D] Development of at least one sensitive neuropsychological assessment measure that has been validated for the detection or tracking of the earliest clinical manifestations of AD. 5 years 2014-2018"

Can you tell me who is in charge of the "neuropsychological assessment measure research" initiative?

Craig Fitzgerald Vice President CNS Vital Signshttp://www.cnsvs.com

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

MAY 2013 COMMENTS

DATE:  May 10, 2013

SUBJECT:  Comments on Interim Milestones

Good morning, Please see attached for comments from ResearchersAgainstAlzheimer'sregarding the "Interim Milestones to Complete the First Goal of the National Alzheimer's Plan by 2025" that were included in the recommendations unanimously approved earlier this year by the Advisory Council on Alzheimer's Research, Care and Service.

Best,

Dave Morgan Lead RepresentativeResearchersAgainstAlzheimer'sCEOByrd Alzheimer's Institute, University of South Florida

ATTACHMENT:   RA2 - Milestones letter - May 9 - Final.pdf

Available as separate links:
ResearchersAgainstAlzheimer's Milestones Comments Researches Against Alzheimer's

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

DATE:  May 1, 2013

SUBJECT:  public comments

Below are my talking points for public comments.

The official 2013 Alzheimer's disease Facts and Figures Report was released on March, 19 and I was very fortunate to be able to speak with all of those who contributed to it. I wonder if others see what I do, or does it take someone with AD to recognize what we are headed for? There is a distinct lack of action when it comes to combating this disease. Here are some of the numbers that worried me.

  • As of 2013, an estimated 5.2 million Americans are living with Alzheimer's disease (AD)
  • By 2050, up to 13.8 million Americans aged 65 and older are projected to be living with the disease
  • Alzheimer's disease is the 6th leading cause of death in the United States; however, it may cause even more deaths than official sources recognize because of the way causes of death are recorded
  • Alzheimer's deaths increased by 68% from 2000-2010 while the number deaths from other diseases decreased. Deaths attributed to heart disease, the number one cause of death, decreased 16%
  • One in 3 seniors is dying with Alzheimer's or dementia; meaning they are dying AFTER developing the disease. In 2013, an estimated 450,000 people will die WITH Alzheimer's
  • In 2012, over 15 million Americans provided 17.5 billion hours of unpaid care for those with AD or other dementia
  • 80% of the care provided in the community is done so by unpaid caregivers
  • The value of this care is approximately $216 billion
  • There are biological and physiological risks associated with providing care. Family members are at greater risk of illness including depression and stress, which in turn can lead to a weakened immune system
  • It is projected that the United States will need an additional 3.5 million health care professionals by 2030 to care for individuals with Alzheimer's. This shortage of geriatric specialists is seen across professions from physicians to social workers

This year, the total cost of caring for people with AD, and other dementias from sources such as Medicare, Medicaid, or out-of pocket will reach $203 billion; this number will increase to $1.2 trillion by 2050. This cost is 3 times higher for individuals with AD versus those without AD

For over 125 years the NIH has been tackling the most progressive diseases. We all know that funding research into diseases is something our government does very well, as evidenced by the decrease in deaths from cancer, HIV/AIDS, heart disease etc. We need the government to get back on track, and put forth the same type of commitment to Alzheimer's.

As many of you know, I and many others are campaigning to have a person living in the early stages of Alzheimer's disease accepted onto the advisory council. As of our last meeting many of the council members have expressed interest and a willingness to have someone, like me who is living with the disease, on the council. This is a great step forward, but we are not quite there yet. It is my hope that by the next meeting the HHS will have a person living with AD on the NAPA advisory council. I would like to thank all the members who are supporting this proposal.

I would like to suggest that the following qualifications be considered when selecting that person.

  • The person should have the diagnosis of early stage Alzheimer's disease
  • Should be in or have been in a clinical trial so they understand the issues and benefits
  • Must be confident, and articulate when discussing the issues related to AD
  • Has first-hand experience and understanding of the issues AD people are dealing with
  • Has a well-rounded understanding of what issues caregivers are dealing with
  • Coming from a business background would be advantageous
  • Has an understanding of government and politics
  • Should embrace technology
  • Are loyal to the cause rather than to any one organization
  • Preferred if they can think out-of-box, and are passionate with regards their mission
  • Can share personal, real-life experiences
  • Has a proven, successful advocacy experience
  • Is a team player
  • Can put the cause above their personal agenda
  • Has experience in working with support groups
  • May help if the person is a visionary

I would like to thank you for allowing me to be able to participate here, and I would like to make a recommendation if I may. From my experience speaking to this council I feel it would be of benefit if there was a question and answer session, either after each speaker, or at the end of the session. This will prevent information from being misinterpreted, and will serve as a learning platform for all the participants.

Additional comments to my talking points above.

I feel it is extremely important to have someone in the Whitehouse representing people with AD/dementia. I think they did for HIV/AIDS. So the question is: Why are they not willing to have someone in the same capacity for AD/dementia? There are so many more people dying from this disease. If the process worked for HIV, will it not have similar results for those with AD/dementia? Let's change the stigma around this disease. Let's show the criticality and urgency, because sometimes I just do not see it.

I would like to thank the international guest we had for their great input, and some of the great progress they made. I almost felt like I would have been better-off in their country in order to get the help I need. This is the United States of America, and we are supposed to be the leaders. Why are we so behind on this issue?

On another note, I am pleading to the readers and audience this site reaches: there are so many people living with this disease, and caregivers who have had to deal with it, why is it that these people do not have any representation at the NAPA meetings. Please make a point of doing that because your stories do matter. Especially for those living in the DC area.

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]

APRIL 2013 COMMENTS

DATE:  April 29, 2013

SUBJECT:  April 29 Meeting NAPA inquiry

What a wonderful live-streaming meeting this morning! It is so inspiring and empowering to be "internationalizing" this effort. It makes us in Hawaii feel linked with the planet on these crucial efforts.

Had a question: when will the proceedings be available on YouTube?

Aloha,

Jody Mishan State Task Force on Alzheimer's Disease and Related Dementias Executive Office on Aging Honolulu, HI

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

DATE:  April 26, 2013

SUBJECT:  Comments on Milestones Being Developed for the National Plan

I would like to comment on the efforts of the NAPA Advisory Council moving towards the release of the second version of the National Plan. 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 the Advisory Council and HHS for developing an ambitious initial plan with admirable overall goals. 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 Investments

    The additional $50 million invested in Alzheimer's last year was certainly a great start in adding resources in an attempt to meet the goal to "Prevent and Effectively Treat Alzheimer's Disease by 2025." Furthermore, the President has included an additional $100 million for Alzheimer's research in the coming year's budget. However, at present, due to extremely tight funding paylines (~7-11% for agencies that support Alzheimer's research) and the impact of the sequester (most agencies are imposing an across the board cut in the funding of existing grants), Alzheimer's researchers are finding funding more difficult to obtain and maintain than at any time in the past two to three decades. There are significant concerns that should this continue, we could lose some of the best researchers in the field. Furthermore, in coming years, it will be absolutely critical to add to these current investments, with the ultimate goal 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. Therefore, the recent investments in Alzheimer's research must represent only the initial investment in a series of increased investments over the next several years. Finally, while most neuroscience researchers are supportive of the President's Brain Mapping Initiative, this cannot come at the expense of or in the place of ongoing funding for Alzheimer's research.

  2. Research Infrastructure/Organization

    To achieve goal 1 of the National 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, NIH or the White House.

  3. Monitoring Progress

    There has been increased discussion both within NIH and on the Advisory Council about creating interim milestones for the National Plan in order to assess whether the plan is moving towards its goals in a timely manner. I highly applaud these efforts. However, most of the interim milestones for goal 1 focus on a variety of translational and clinical research milestones (i.e., accelerating drug development, performing clinical trials). While these are clearly important milestones and should definitely be included as the plan moves forward, at present, it remains completely unclear whether the current compounds in the drug pipeline will be successful in the treatment/prevention of Alzheimer's disease. Given this, it is essential that additional concrete milestones should be included to identify novel targets (thus far, pretty much only one target has been focused on), screen for compounds that will engage these targets, perform preclinical testing to examine the effectiveness of these compounds and finally moving these compounds into clinical trials in humans. It is critical to identify these additional milestones and also support the increased research funding required to meet these milestones and ultimately achieve the goals of the National Plan.

Thank you for the opportunity to provide input into the 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 Scientist, Department of NeurosciencesLerner Research InstituteCleveland Clinic FoundationCleveland, OH

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

DATE:  April 23, 2013

SUBJECT:  Senate Aging Committee to examine efforts to combat Alzheimer's

United States SenateSpecial Committee on AgingSen. Bill Nelson (D-FL), ChairmanSen. Susan Collins (R-ME), Ranking Memberhttp://www.aging.senate.gov

Senate Aging Committee to examine efforts to combat Alzheimer's

Please Note: Wednesday's hearing will be streamed live on the committee website. You can watch the hearing, as well as access witness testimony, by clicking here circa 2:00 pm tomorrow.

WASHINGTON, DC -- Aniconic figure in country music, who is slowly being robbed of his memories by Alzheimer's and forced to end touring, will head to Capitol Hill this week to advocate on behalf of the growing number of elderly who are being struck with this mind robbing disease. Country Music Hall of Famer Glenn Campbell will make an appearance with his daughter Ashley on Wednesday before the Senate Special Committee on Aging. Campbell, who received a Lifetime Achievement Award at last year's Grammy Awards, is best known for chart-topping hits such as "Rhinestone Cowboy", "Wichita Lineman", "Southern Nights" and "Galveston." The 77-year old entertainer was diagnosed with Alzheimer's in 2011.

The hearing, set for 2:00 p.m. in room 106 of the Dirksen Senate Office Building, comes at a time when public health officials, researchers and advocates are scrambling to find effective treatments to combat Alzheimer's as the country's aging population increases. By one estimate, the number of people over 65 with the disease is expected to nearly triple by 2050, from five million today to 13.8 million, according to a report released in March by the Alzheimer's Association. More troubling, the report also found that deaths linked to Alzheimer's increased 68-percent from 2000 to 2010, while those attributed to other diseases such as prostate cancer, breast cancer, heart disease and HIV all declined.

"In many ways, Alzheimer's has become the defining disease of my generation," said Aging Committee ranking member Sen. Susan Collins (R-ME), who co-authored a 2011 law directing the government to develop a long-term plan to fight Alzheimer's. "An estimated 5.2 million Americans have Alzheimer's disease, more than double the number in 1980. It is estimated that nearly one in two of the baby boomers reaching 85 will develop Alzheimer's. If nothing is done to slow or stop this disease, it will cost the United States $20 trillion over the next 40 years."

"Sadly, we've yet to find a way to prevent, cure or even slow Alzheimer's progression," said the panel's chairman Sen. Bill Nelson (D-FL). "If we can put a man on the moon in less than a decade, then we should be able to eventually beat this disease."

The lack of effective treatments has led congress and the administration to step up efforts to combat Alzheimer's. Following Congress' passage of the National Alzheimer's Project Act in 2011, the Obama administration last May unveiled a national strategy aimed at preventing and treating Alzheimer's disease by 2025. In addition to expanding research funding, the plan aims to improve the care and support Alzheimer's patients and their families receive.

Earlier this month, the White House announced it would ask Congress for $100 million to start a brain-mapping project that could lead to better ways to treat brain disorders such as Alzheimer's.

SENATE SPECIAL COMMITTEE ON AGINGHEARING: The National Plan to Address Alzheimer's Disease: Are We On Track to 2025?2:00 p.m. EDT, Wednesday, April 24, 2013Dirksen Senate Office Building, Room 106

WITNESSES:Ashley Campbell, testifying on behalf of Glen Campbell and familyDon Moulds, PhD, Acting Assistant Secretary of Planning and Evaluation, United States Department of Health and Human ServicesRonald Petersen, MD, PhD, Director of the Mayo Alzheimer's Disease Research Center and the Mayo Clinic Study of AgingMichael D. Hurd, PhD, Director, RAND Center for the Study of Aging

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

DATE:  April 18, 2013

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.

Sherye Foster San Antonio, TX

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

DATE:  April 14, 2013

SUBJECT:  Intervention to help Alzheimer's Caregivers

Molly thought you'd be interested in this front page story from the CapeCodOnline.com web site:

Story Title: Cape organization helps Alzheimer's caregivers http://www.capecodonline.com/apps/pbcs.dll/article?AID=/20130411/NEWS/304110333&emailAFriend=1

Thank you for all your support!

Molly Perdue

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

DATE:  April 7, 2013

SUBJECT:  Million Dollar Idea for Dementia

I thought this article might be of interest to your committee. St. Paul, Minnesota has a contest calling for a million dollar idea to set the city a part. I submitted a proposal for St Paul to become the first Dementia friendly city and have been getting a great response from this.

Needless to say we have a long ways to go. First we need to become a finalist via the judging and then there will be a voting process. I thought this might give your advisory council some ideas on how to shift our dementia care culture by working collaboratively to support those in need while we wait for a cure to be found.

Here is a link to my submission: http://www.mnideaopen.org/node/20737

Here is link to the article noting the close of the submission process. Pretty interesting submissions and a wide variety of them: http://www.twincities.com/ci_22944019/now-theres-an-idea-suggestions-improve-st-paul

Curious about the Chickens? ASK!

Lori La Bey, COS, AOSADThe Hybrid CAR Egiver™ Founder of Alzheimer's Speaks

Sample Video/Audio:    Video -- Driving Change in Caregiving: http://www.youtube.com/watch?v=MQ_d8OSQrlE    Radio Interview -- Caregiving& Alzheimer's Tools: http://tobtr.com/s/1228381    Video -- The Bald Chicken, Aging and Illness?: http://www.youtube.com/watch?v=vfMy1b6Jm5A    Dementia Chats -- Free Educational Webinars: http://www.youtube.com/watch?v=vfMy1b6Jm5A    Alzheimer's Speaks International Collaborative Resource Directory & Free Tools: http://alzheimersspeaks.com/shifting-your-dementia-care-culture    Alzheimer's Speaks Radio Show: http://www.alzheimersspeaks.com/    Speaking, Training, Consulting: http://www.blogtalkradio.com/alzheimersspeaks    Arthur's Memory Cafe: http://www.seniorlifestyletrends.com/

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

MARCH 2013 COMMENTS

DATE:  March 12, 2013

SUBJECT:  LEAD Coalition recommendations for updates to the National Plan to Address Alzheimer's Disease

Thank you for your bold and thoughtful leadership of the National Plan to Address Alzheimer's Disease. On behalf of the LEAD Coalition and our partners, I am attaching to this message a letter signed by 54 organizations in support of recommendations for your forthcoming 2013 Plan update.

We appreciate the opportunity to contribute to the dialogue and to collaborate on implementing all elements of the Plan.

Respectfully,

Ian N. Kremer Executive Director Leaders Engaged on Alzheimer's Disease http://www.leadcoalition.org

ATTACHMENT:   LEAD Coalition recommendations for 2013 National Alzheimer's Plan.pdf

Available as separate links:
LEAD Coalition Recommendations for 2013 National Alzheimer's Plan LEAD Coalition Recommentaions for 2013 National Alzheimer's Plan

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

DATE:  March 8, 2013

SUBJECT:  Strengthen the National Plan to Address Alzheimer's Disease

Alzheimer's is a deadly and unforgiving disease that affects 5.4 million Americans and costs hundreds of billions of dollars to our country each year. One in seven American workers is, or has been, a caregiver for a loved one with Alzheimer's or dementia. A crisis of this magnitude merits an equally serious response. The National Plan to Address Alzheimer's Disease is a bold and groundbreaking effort that will help beat Alzheimer's by 2025, but it must be strengthened if we are to reach that goal.

The Advisory Council on Alzheimer's Research, Care, and Services met in January and made recommendations to HHS. The Council emphasized the urgent need for greater federal research funding, stronger and expanded support for families and caregivers, and a detailed road map with milestones to advance us towards the ultimate goal: the prevention and effective treatment of Alzheimer's disease by 2025. These recommendations are so critical to the effectiveness of the plan that the Council unanimously approved them.

As the Department updates the national plan, I urge you to ensure that these recommendations are included in the 2013 version. We can beat Alzheimer's, but we need a plan that's aggressive, that ensures we have the resources we need, and that includes a detailed road map to getting to a cure.

*We REALLY Do NEED These NOW! My Wonderful Mother is JustBegginning The Early Stages of Alzheimer's & Dementia. And While It Is HEARTBREAKING To ALL of Us, It Makes It Even Worse For Her Since She Worked With Alzheimer's Patients About 10 Years or So Ago, So She Knows What She's Starting To Go Through. And The Way I See It, That Makes It That Much Harder For Her As Well As The Rest of Her Children! It's So Hard To Imagine Just What She's Going Through As She Had ALWAYS Been The Rock of Our Family & Such An Incredible One At That! I Beg Of You To Give Us All The Aggressive Resources Needed To Find The Cure Once & For ALL; And in The Meantime I Pray EverydayThat It Won't Come Too Late For My Wonderful, Gracious MOTHER!

Jody Webb Asheville, NC

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

DATE:  March 8, 2013

SUBJECT:  AFA's Time to Build Report

It has come to my attention that AFA's white paper, Time to Build, which contains AFA recommendation's for the revised plan is not listed in the NAPA comments. I thought I had submitted through the NAPA website. Possibly not...

Attached is the report. Can you give me the email I need to ensure it makes it on the public comment page?

Many thanks,

Eric Sokol VP,Public Policy Alzheimer's Foundation of America

ATTACHMENT:   Time to Build Report-12-12.pdf

Available as separate links:
Time to Build: Action Steps and Recommendations to Update the "National Plan to Address Alzheimer's Disease" Time to Build

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

DATE:  March 7, 2013

SUBJECT:  Please Lead for a Cure

I write to you as a fellow Kansan. Both of my parents were diagnosed at the same time in 2009 with Alzheimer's. It breaks my heart to see them slowly slip away. And, there is no respite from this horrible disease because some many all around me are suffering from the disease or suffering from caring for someone with the disease.

I know I don't have to tell you the facts. I just want to implore you to do all you can to lead us to a future without Alzheimer's.

Sincerely,

Judy Roth Manhattan, KS

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

DATE:  March 5, 2013

SUBJECT:  Strengthen the National Plan to Address Alzheimer's Disease

Alzheimer's is a deadly and unforgiving disease that affects 5.4 million Americans and costs hundreds of billions of dollars to our country each year. One in seven American workers is, or has been, a caregiver for a loved one with Alzheimer's or dementia. A crisis of this magnitude merits an equally serious response. The National Plan to Address Alzheimer's Disease is a bold and groundbreaking effort that will help beat Alzheimer's by 2025, but it must be strengthened if we are to reach that goal.

The Advisory Council on Alzheimer's Research, Care, and Services met in January and made recommendations to HHS. The Council emphasized the urgent need for greater federal research funding, stronger and expanded support for families and caregivers, and a detailed road map with milestones to advance us towards the ultimate goal: the prevention and effective treatment of Alzheimer's disease by 2025. These recommendations are so critical to the effectiveness of the plan that the Council unanimously approved them.

As the Department updates the national plan, I urge you to ensure that these recommendations are included in the 2013 version. We can beat Alzheimer's, but we need a plan that's aggressive, that ensures we have the resources we need, and that includes a detailed road map to getting to a cure.

SE TN needs help with improving its hospitals, and other health care facilities in all areas. We do not need more sprawl, developments, industry, big business, big(ger)roads,interstates,highways, or metro annexation, ex/sub/urbanization in and around the Apison, E. Brainerd, E. hamilton, Summit/Collegedale, Harrison Bay State park and its area, Ooltewah, McDonald, Lebanon, Flint Springs, Black Fox, Blue Springs, Red Clay State historic park area,SACREDCOUNCIL GROUNDS of INtertribal Native Americans, and into Cohutta, Cherokee Valley GA, etc.

The whole metro charter needs to be revoked, suspended, and prevented from a big landgrab happening to these areas above and/or the whole region.

These areas listed above, and perhaps some others need to be a (rural, farmland friendly) National Conservation area (i.e. via USDA,OTR, national forests) conserving our mountain range, ridgelines, water,headwaters,groundwater, wetlands, watersheds, creeks, streams, environment, wildlife, endangered/migratory species in and around these above areas, preserving the historic roads, trails,etc., now and in the future.

Also, many people could probably use the Class Act, if it, or something similar is ever passed, implemented,etc.

These areas listed above,etc., do not need to further "chop up" and/or subdivide the lands,etc., as that causes stormwater runoff problems, and flooding.

These areas listed above do not need big houses, "McMansions", retirement villages, paved surfaces, etc., nor do they need to be more developed then they are. They already have too much and too many people trying to live there, as they are close to headwater areas, and recharge/discharge areas, that need open lands, spaces, forests,etc.

These areas listed above do not need more homes close to the headwater areas, as many of these headwaters provide drinking water for many people in other areas, and states. Also, these areas are possibly prone to dangerous sinkholes, etc., as these areas do have openings in the ground releasing water, as well as caverns and caves, much of which may not have even been reported. Many of the residents in and around these areas, still use thier well water for at least part of their water supply, even though "city water" was brought out into these areas, with people feeling that the city was just being humane in supplying water to people out here, due to an excessive drought we were in at the time, no one was really connecting it to the possiblity that they might want to use that as a possible reason to add more developments, or ex/sub/urbanize these historic rural, headwater areas, etc.

These areas do not need big population increases, or gas/sewer lines, or more septic tanks at all.

However, if someone needed a home in these rural conservation areas, it needs to be a smaller home, possibly a mobile or modular home, not a trailer park, or a development, these areas need to remain as quiet and backwoods as possible, with an increase in natural tourism in areas such as equestrian activities, clean agriculture, birding tours, ecotourism, history, and more.

Though we are not living in Chattanooga, hopefully the fact they just elected democrat mayor Andy Berke may help with these and other needs, in addition to whatever help your could provide. Thank you.

Kim Rowlett Cleveland, TN

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

DATE:  March 5, 2013

SUBJECT:  Strengthen the National Plan to Address Alzheimer's Disease

Alzheimer's is a deadly and unforgiving disease that affects 5.4 million Americans and costs hundreds of billions of dollars to our country each year. One in seven American workers is, or has been, a caregiver for a loved one with Alzheimer's or dementia. A crisis of this magnitude merits an equally serious response. The National Plan to Address Alzheimer's Disease is a bold and groundbreaking effort that will help beat Alzheimer's by 2025, but it must be strengthened if we are to reach that goal.

The Advisory Council on Alzheimer's Research, Care, and Services met in January and made recommendations to HHS. The Council emphasized the urgent need for greater federal research funding, stronger and expanded support for families and caregivers, and a detailed road map with milestones to advance us towards the ultimate goal: the prevention and effective treatment of Alzheimer's disease by 2025. These recommendations are so critical to the effectiveness of the plan that the Council unanimously approved them.

As the Department updates the national plan, I urge you to ensure that these recommendations are included in the 2013 version. We can beat Alzheimer's, but we need a plan that's aggressive, that ensures we have the resources we need, and that includes a detailed road map to getting to a cure.

My personal story is surprising for an Advance Practice RN, it was right before my eyes and I didn't recognize it for years.

My husband was a decorated military pilot who became an Airline Pilot and flew until September 10, 2001. He returned from Istanbul the day before 9/11 and didn't fly again since his 60th birthday was at the end of September and he was forced to retire. He completed Law School after he retired and passed the Bar Exam. It took he a couple of tries, but I attributed that to his age rather than a declining mental status. He worked as an attorney for 3 years and then it just became too much, so he retired. It was only after being evaluated for Depression, PTSD and being counseled by a wonderful VA counselor that our Primary Care Physician became worried and ordered an MRI that the diagnosis of Alzheimerscame. He now participates in a Drug Study through Summit Research and is stable on an Alzheimer's medication and he is doing as well as we can expect for early to moderate Alzheimers. He is benefiting from the Research Study because of the Medical professionals he interacts with and our lives will be disrupted again if the funding disappears. This experience gives stability to our lives and helps us cope and have hope for the future. Please employ a reasoned view and do not cut essential medical research funding, it will take us back to a place where hope is not part of so many people's lives. And hope is what keeps us going.

Susan Greb Vancouver, WA

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

DATE:  March 5, 2013

SUBJECT:  Strengthen the National Plan to Address Alzheimer's Disease

This is a critical medical problem for almost every American family.Please ensure that the National Plan includes strong support to find a cure!

Arthur Hunt Hamden, CT

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

DATE:  March 5, 2013

SUBJECT:  Strengthen the National Plan to Address Alzheimer's Disease

Alzheimer's is a deadly disease affecting 5.4 million Americans and costing hundreds of billions of dollars to our country each year. It not only affects the patients, but their families, who provide for the majority of their care. With the aging of the baby boomers, we are on the verge of a crisis. The National Plan to Address Alzheimer's Disease is a bold and groundbreaking effort that can help meet the needs of these patients and their families.

There is a need for greater federal research funding, stronger and expanded support for families and caregivers, and a detailed road map to advance us towards the prevention and effective treatment of Alzheimer's disease by 2025.

I urge you to follow these recommendations in upcoming planning meetings at HHS.

Kevin Duff Cottonwood Heights, UT

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

DATE:  March 5, 2013

SUBJECT:  Strengthen the National Plan to Address Alzheimer's Disease

Alzheimer's is a deadly and unforgiving disease that affects 5.4 million Americans and costs hundreds of billions of dollars to our country each year. One in seven American workers is, or has been, a caregiver for a loved one with Alzheimer's or dementia. A crisis of this magnitude merits an equally serious response. The National Plan to Address Alzheimer's Disease is a bold and groundbreaking effort that will help beat Alzheimer's by 2025, but it must be strengthened if we are to reach that goal.

The Advisory Council on Alzheimer's Research, Care, and Services met in January and made recommendations to HHS. The Council emphasized the urgent need for greater federal research funding, stronger and expanded support for families and caregivers, and a detailed road map with milestones to advance us towards the ultimate goal: the prevention and effective treatment of Alzheimer's disease by 2025. These recommendations are so critical to the effectiveness of the plan that the Council unanimously approved them.

As the Department updates the national plan, I urge you to ensure that these recommendations are included in the 2013 version. We can beat Alzheimer's, but we need a plan that's aggressive, that ensures we have the resources we need, and that includes a detailed road map to getting to a cure.

Dear Decision Maker:

With the Baby Boomer aging rapidly the oldest being at the age of 70 yrs old and with Alzheimersbeing a trait inherited by either parents there is likely hood of 1/2 th population being in nursing home or will be cared for at home due to the cost of nursing home care which for most americansis prohibitive in daily costs the idea of workers working tiltheir 70 leaves them no choice but nursing home or in home health care by family members not a feasible thing to do in this society where two incomes are an economic must.

Please include a National Plan for those that will without a doubt circum to AlzheimersDisease as they are Baby Boomers now dealing with elderly parents with not much choice available to themselves as well, Sincerely judy wisboro

Judy Wisboro Worcester, MA

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DATE:  March 5, 2013

SUBJECT:  Strengthen the National Plan to Address Alzheimer's Disease

Alzheimer's is a deadly and unforgiving disease that affects 5.4 million Americans and costs hundreds of billions of dollars to our country each year. One in seven American workers is, or has been, a caregiver for a loved one with Alzheimer's or dementia. A crisis of this magnitude merits an equally serious response. The National Plan to Address Alzheimer's Disease is a bold and groundbreaking effort that will help beat Alzheimer's by 2025, but it must be strengthened if we are to reach that goal.

The Advisory Council on Alzheimer's Research, Care, and Services met in January and made recommendations to HHS. The Council emphasized the urgent need for greater federal research funding, stronger and expanded support for families and caregivers, and a detailed road map with milestones to advance us towards the ultimate goal: the prevention and effective treatment of Alzheimer's disease by 2025. These recommendations are so critical to the effectiveness of the plan that the Council unanimously approved them.

As the Department updates the national plan, I urge you to ensure that these recommendations are included in the 2013 version. We can beat Alzheimer's, but we need a plan that's aggressive, that ensures we have the resources we need, and that includes a detailed road map to getting to a cure.

My mother (1919-1998) had 3rd or 4th stroke with dementia complicationher last 3 yrs.Primarily, her last yr., she lost her memories of family members, events and communication skills.My mother was a vibrant wife of a USMC LtCol (Retd) husband (1919-1991).She basically was a single-parent for 24 yrs. of active assignments, raising 3 daughters and son, all with special needs, before there were medical diagnoses, education & community supports.

We don't need to go back to what my mother fought against--the denials and accusation by providers, of whom she tried to seek help.The families today and in the future need all the hope medical research can give that Alzheimers/dementia does not have rob individuals of their most precious family memories.

Michaelene Manion Port Orchard, WA

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

DATE:  March 5, 2013

SUBJECT:  Strengthen the National Plan to Address Alzheimer's Disease

Alzheimer's is a deadly and unforgiving disease that affects 5.4 million Americans and costs hundreds of billions of dollars to our country each year. One in seven American workers is, or has been, a caregiver for a loved one with Alzheimer's or dementia. A crisis of this magnitude merits an equally serious response. The National Plan to Address Alzheimer's Disease is a bold and groundbreaking effort that will help beat Alzheimer's by 2025, but it must be strengthened if we are to reach that goal.

The Advisory Council on Alzheimer's Research, Care, and Services met in January and made recommendations to HHS. The Council emphasized the urgent need for greater federal research funding, stronger and expanded support for families and caregivers, and a detailed road map with milestones to advance us towards the ultimate goal: the prevention and effective treatment of Alzheimer's disease by 2025. These recommendations are so critical to the effectiveness of the plan that the Council unanimously approved them.

As the Department updates the national plan, I urge you to ensure that these recommendations are included in the 2013 version. We can beat Alzheimer's, but we need a plan that's aggressive, that ensures we have the resources we need, and that includes a detailed road map to getting to a cure.

My note: I'm a nurse and have seepatients in various stages of the disease, it's horrid. The confusion and fear on the faces of people fairly early in the disease, the exhaustion on the faces of the family member's faces as they recount the various ways that they have tried to keep their loved one safe. The agonisedlooks on the family's faces as they listen to their loved one just moan and scream. The guilty look of relief when they finally put their loved one in a home. The look of total relief mixed with grief when their loved one dies. It is a horrible disease for everyone involved, a disease that we need to find a cure for. None of us know if we'll get the disease. How many of us joke a little nervously that we must be getting Alzheimer's disease when we forget what we just were saying or why we came into that particular room? For how many of us will that joke become a reality? Please help in the fight against this disease, don't let your little joke become your reality.

Heather McCall-Kelly Middletown, CT

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

DATE:  March 5, 2013

SUBJECT:  Strengthen the National Plan to Address Alzheimer's Disease

"THERE BUT FOR THE GRACE OF GOD GO THEE."

Alzheimer's is a SEADLY, UNFORGIVING & INDISCRIMINATE DISEASE that affects 5.4 MILLION Americans and COSTS HUNDREDS of BILLIONS of DOLLARS to 'OUR' COUNTRY each year.

"AN OUNCE OF PREVENTION IS WORTH" ETC..................................

1 in 7 AMERICAN WORKERS IS, or HAS BEEN, a caregiver for a loved one with Alzheimer's or dementia.

A CRISIS of this MAGNITUDE merits an equally serious response.

The National Plan to Address Alzheimer's Disease is a BOLD & GROUNDBREAKING effort that IS ABSOLUTELY NECESSARY and SILL HELP BEAT Alzheimer's by 202. IT MUST BE STRENGTHENED TO REACH THAT GOAL.

"THERE BUT FOR THE GRACE GO THEE OR 'ONE OF YOUR OWN'." IMAGINE THAT SCENARIO IN YOUR CLEAR MIND OF TODAY!!!!

IT IS NOT FAR FETCHED TO IMAGINE THAT IT COULD BE YOU OR SOMEONE YOU CARE ABOUT.

The Advisory Council on Alzheimer's Research, Care, and Services met in January and made recommendations to HHS. The Council emphasized the URGENT NEED for greater federal research funding, stronger and expanded support for families and caregivers, and a DETAILED ROAD MAP with milestones to advance us towards the ultimate goal: the PREVENTION & EFFECTIVE TREATMENT of Alzheimer's disease by 2025.

These recommendations ARE SO CRITICAL to the effectiveness of the plan that the COUNCIL UNANIMOUSLY ARROVED THEM.

As the Department updates the national plan, I urge you to ENSURE that these recommendations are included in the 2013 version. WE CAN BEAT Alzheimer's, but we need a plan that's AGGRESSIVE, that ensures we have the resources we need, and that includes a detailed road map to getting to a cure.

IMAGINE IF WE HAD BEEN MORE AGRESSIVE AND ACTED SWIFTLY WITH AIDS AND HIV?????

Anita Buffer Warminster, PA

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

DATE:  March 5, 2013

SUBJECT:  Strengthen the National Plan to Address Alzheimer's Disease

As a researcher of Alzheimer's disease for 11 years, I have seen the tragic and unforgiving consequences of this form of dementia on both its victims and their caregivers. Over 5.4 million Americans are afflicted with Alzheimer's disease at a cost of hundreds of billions of dollars to our country each year. By 2050, 11-16 million people are expected to have this form of dementia. A crisis of this financial and emotional magnitude deserves an equally serious response. The goal of the National Plan to Address Alzheimer's Disease is to beat Alzheimer's by 2025, but we need support in order to acheive that goal.

The Advisory Council on Alzheimer's Research, Care, and Services met in January and made recommendations to HHS. The Council emphasized the urgent need for greater federal research funding, stronger and expanded support for families and caregivers, and a detailed road map with milestones to advance us towards the ultimate goal: the prevention and effective treatment of Alzheimer's disease by 2025. These recommendations are so critical to the effectiveness of the plan that the Council unanimously approved them.

As the Department updates the national plan, I urge you to ensure that these recommendations are included in the 2013 version. A aggresive plan is needed to provide the resources we need to find a cure for this devistatingdisease.

Thank you for your attention in this matter.

Chera Maarouf Sun City, AZ

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

DATE:  March 5, 2013

SUBJECT:  Strengthen the National Plan to Address Alzheimer's Disease

If we don't make finding a cause and discovering treatment for Alzheimer's Disease now, our entire medical system will be at risk, perhaps our entire economy. As the largest bubble in population in our countries history faces the ravages of this disease, we better be prepared and by cutting financing we are facing disaster!

When this "epidemic" takes hold, it will put all those suffering into a whole new category far beyond Polio and HIV/Aids. Please be the heroes of our future. Deal with this now before it is too late. Do not leave our children to lose their all their dreams in the pit that will be caused by your inaction.

Thanks you.

Alzheimer's is a deadly and unforgiving disease that affects 5.4 million Americans and costs hundreds of billions of dollars to our country each year. One in seven American workers is, or has been, a caregiver for a loved one with Alzheimer's or dementia. A crisis of this magnitude merits an equally serious response. The National Plan to Address Alzheimer's Disease is a bold and groundbreaking effort that will help beat Alzheimer's by 2025, but it must be strengthened if we are to reach that goal.

The Advisory Council on Alzheimer's Research, Care, and Services met in January and made recommendations to HHS. The Council emphasized the urgent need for greater federal research funding, stronger and expanded support for families and caregivers, and a detailed road map with milestones to advance us towards the ultimate goal: the prevention and effective treatment of Alzheimer's disease by 2025. These recommendations are so critical to the effectiveness of the plan that the Council unanimously approved them.

As the Department updates the national plan, I urge you to ensure that these recommendations are included in the 2013 version. We can beat Alzheimer's, but we need a plan that's aggressive, that ensures we have the resources we need, and that includes a detailed road map to getting to a cure.

Geraldine CloustonPlymouth, WI

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

DATE:  March 5, 2013

SUBJECT:  Strengthen the National Plan to Address Alzheimer's Disease

If you have been involved with anyone affected by Alzheimer's Disease, there is nothing new I can say. If it is only a theory to you, then I can tell you it is a horror for those who suffer from it and for those who have to watch it destroy the person they love.

Anything you can do to further research, treatment and understanding will reward you.

Please do what is in your power to do.

Elinor Martinez Bethesda, MD

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

DATE:  March 5, 2013

SUBJECT:  My father suffered from Alzheimers and three of us ended up with Cancer...Please help!

My father was a superhero. He was a star football player in his day, back in the 1940's. He had articles written about him as a pro golfer. He was handsome and strong and loved by everyone. Until Alzheimers took hold of him and never let him go.

My mother was his caretaker, until she ended up with Ovarian Cancer. Then my sister stepped in to care for both of them, until she ended up with cancer. I stepped in after that, and I ended up with cancer. Being a caretaker is an unbelievably stressful job, and wears people down. We are prime examples. They are all gone now, taken by their illnesses. I was lucky and survived.

So I ask you, PLEASE help to Strengthen the National Plan to Address Alzheimer's Disease!

Alzheimer's is a deadly and unforgiving disease that affects 5.4 million Americans and costs hundreds of billions of dollars to our country each year. One in seven American workers is, or has been, a caregiver for a loved one with Alzheimer's or dementia. A crisis of this magnitude merits an equally serious response. The National Plan to Address Alzheimer's Disease is a bold and groundbreaking effort that will help beat Alzheimer's by 2025, but it must be strengthened if we are to reach that goal.

The Advisory Council on Alzheimer's Research, Care, and Services met in January and made recommendations to HHS. The Council emphasized the urgent need for greater federal research funding, stronger and expanded support for families and caregivers, and a detailed road map with milestones to advance us towards the ultimate goal: the prevention and effective treatment of Alzheimer's disease by 2025. These recommendations are so critical to the effectiveness of the plan that the Council unanimously approved them.

As the Department updates the national plan, I urge you to ensure that these recommendations are included in the 2013 version. We can beat Alzheimer's, but we need a plan that's aggressive, that ensures we have the resources we need, and that includes a detailed road map to getting to a cure.

Mitzi Spallas South Pasadena, CA

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

DATE:  March 5, 2013

SUBJECT:  The upcoming Alzheimer's Disease epidemic

Unfortunately there are a large group of congressmen and senators who oppose spending more money to combat Alzheimer's disease. This group seems to care more about reducing the deficit then supporting efforts to find new treatments for AD. We need to speak in terms they understand. 200 billion dollars a year is what it costs our government and citizens to care/ treat AD. This number is expected to grow to a trillion dollars a year over the next several decades. Supporting efforts to find novel treatments for AD makes economic sense.

Patrick Sullivan DVAMC Chapel Hill, NC

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

DATE:  March 5, 2013

SUBJECT:  Strengthen the National Plan to Address Alzheimer's Disease

Alzheimer's is a deadly and unforgiving disease that affects 5.4 million Americans and costs hundreds of billions of dollars to our country each year. One in seven American workers is, or has been, a caregiver for a loved one with Alzheimer's or dementia. A crisis of this magnitude merits an equally serious response. The National Plan to Address Alzheimer's Disease is a bold and groundbreaking effort that will help beat Alzheimer's by 2025, but it must be strengthened if we are to reach that goal.

The Advisory Council on Alzheimer's Research, Care, and Services met in January and made recommendations to HHS. The Council emphasized the urgent need for greater federal research funding, stronger and expanded support for families and caregivers, and a detailed road map with milestones to advance us towards the ultimate goal: the prevention and effective treatment of Alzheimer's disease by 2025. These recommendations are so critical to the effectiveness of the plan that the Council unanimously approved them.

As the Department updates the national plan, I urge you to ensure that these recommendations are included in the 2013 version. We can beat Alzheimer's, but we need a plan that's aggressive, that ensures we have the resources we need, and that includes a detailed road map to getting to a cure.

Available as separate links:
List of the People Who Sent this Form Letter in March 2013 To Be Added

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

FEBRUARY 2013 COMMENTS

DATE:  February 13, 2013

SUBJECT:  CSWE Comment on the National Plan to Address Alzheimer's Disease

As Nancy mentioned, attached is a letter from CSWE providing additional comment on the National Plan. Please share with the Advisory Council and however else you see fit. Let me know if you have questions.

Warm regards,

Wendy A. Naus Lewis-Burke Associates, LLC

ATTACHMENT:   CSWE NAPA Comment Feb 2013.pdf

Available as separate links:
Public Comment on the National Plan to Address Alzheimer's Disease Council of Social Work Education

==========

From: Nancy Hooyman Sent: Tuesday, February 12, 2013 2:26PM Subject: social work curricular resources on dementia care

When we met in November 2011 at the CSWE Annual Program Meeting, I indicated that I would send you information about teaching materials that support social work students' attainment of competencies in working with persons with Alzheimer's disease (AD) and their families. Since then, I have been contacting social work faculty and asking them to submit such curricular resources. After I review all the submissions to ensure their quality, these materials will be posted on the Gero-Ed Center website (http://www.Gero-EdCenter.org), which will ensure their dissemination nationally.

These teaching resources can be categorized as case studies; in-class exercises; media; and course syllabi. Most of the case studies and in-class exercises provide opportunities for students to practice assessment skills. However, field placements or service learning experiences are the most widely used mechanism to prepare students to work with older adults with dementia. Nearly every social work program that has responded to our request for curricular resources has placements with the local Alzheimer's Association, adult day health centers that serve persons with dementia, memory care units in skilled nursing facilities and geriatric assessment clinics. There are also placements that are not in typical geriatric settings, such as students in prison settings working with inmates with dementia, advocating at their state legislatures for more funding for services for persons with Alzheimer's disease, or implementing recreational music as a way to reduce stress for social workers practicing with persons with dementia.

I will update you once we have all these materials categorized on our website. At that point, I hope that you will be able to inform others, including the Geriatric Education Centers, of their availability. These curricular resources could be readily adapted by other professions and disciplines for teaching purposes to ensure competence in working with persons with AD.

I also understand that Wendy Naus will also be sending you a letter from Darla Spence Coffey, the President of the Council on Social Work Education commenting on the National Plan. We hope that you will be able to distribute that letter to your colleagues at HHS and Advisory Council members. We are most appreciative of your support of social work as a key profession in working with persons with AD and their families.

Nancy R. Hooyman, PhDHooyman Professor of Gerontology and Dean EmeritusCo-PI, CSWE National Center on Gerontological Social Work EducationUniversity of Washington School of Social WorkSeattle, WAhttp://www.Gero-EdCenter.org

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

JANUARY 2013 COMMENTS

DATE:  January 17, 2013

SUBJECT:  Next Advisory Council meeting

Good morning! I wanted to thank you once more for allowing Eric the opportunity to speak at the meeting on Monday. It meant a great deal to him - and to us - that he could share his story and his request for support.

Could you tell me the date for the next meeting? I would like to start reaching out to potential speakers now so that I can confirm their participation and get their names and information to you well in advance of the deadline.

Thanks!

Cindy SchelhornDirector, Communications and Marketing Alzheimer's Association National Capital Area Chapter Fairfax, VAhttp://www.alz.org/nca

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

DATE:  January 14, 2013

SUBJECT:  January 2013 meeting - comments from Minnesota

I would like to submit the following comments to be shared at the January 14, 2013 meeting on behalf of Jean Wood.

Dear Members of the Advisory Council on Alzheimer's Research, Care, and Services:

On behalf of my collaborators in ACT on Alzheimers, the implementation group for the Minnesota Alzheimer's Plan, the Minnesota Board on Aging and the Alzheimer's Association MN ND, we would like to express our deepest appreciation for the work of NAPA and the recommendations to dedicate $10.5 million to seed the development of state action plans, restore ADSSP funding to $13.5 million and fully fund the National Family Caregivers Act. Minnesota using its own private and public resources has not only developed a legislatively approved Alzheimer's Plan but a powerful collaboration that has moved forward to implement the plan. ADSSP funding has been key to this effort as well as enabling Minnesota to implement important evidence-based interventions such as the New York University Caregiver Intervention. Minnesota relies on a network of dementia capable caregiver consultants many funded through the National Family Caregivers program to support Alzheimer's caregivers in the community. Minnesota has dedicated significant state and private dollars to building a dementia capable medical care and community care system of the highest quality. With the national coordination and funding that is being recommended by NAPA our work and that of other states would be greatly magnified and impact many more lives.

Jean Wood Director, Aging and Adult Services DivisionMinnesota Department of Human ServicesExecutive DirectorMinnesota Board on Aging

Donna Walberg Integrated Systems -- Dementia CapabilityMinnesota Board on Aging St. Paul, MN

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

DATE:  January 13, 2013

SUBJECT:  Person with Alzheimer's should be on the Advisory Council

While I thank you and appreciate all that you are doing, I find it shocking and appalling that no person with the actual disease that you are discussing is on your council.

I cannot think of another disease where this might happen.

From my extensive experience working with people with dementia who are advocates for themselves and other people with the disease, I know firsthand that the best people from whom to learn about the disease are the people with it.

People in the early and mid stages of the disease are able to communicate in a language that the rest of us can understand (I believe that it's up to the rest of us to learn how to communicate with people who lose the ability to communicate in a way that we understand), and they already appreciate much of the difficulties and challenges faced by people in all stages of the disease. In addition, people with early onset Alzheimer's can report firsthand the unique challenges that they face by losing their jobs, taking on new expenses, and yet in many cases still putting children through college and saving for retirement.

In addition, people with dementia must be given the opportunity to advocate for themselves, as the plans that you are recommending will be impacting them directly. It is their future that you are deciding, and yet they have no direct input into these plans.

While there are many many people with dementia across the USA who are active advocates, standing up and speaking out about dementia, you need look no further than Michael Ellenbogen as a passionate, knowledgeable, and outspoken individual, whose hard work and perseverance is already changing the way Alzheimer's disease is viewed by society in general. Michael would make an excellent addition to the Advisory Council.

Thank you for your consideration,

Laura Bowley, Mindset Memory Centre Editor of I CAN! I WILL! Stand Up and Speak Out about Dementia (http://www.alz.co.uk/icaniwill)Facilitator of A Meeting of the Minds virtual meeting of people with dementia (http://www.dementiasupportnetworks.com)

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

DATE:  January 13, 2013

SUBJECT:  Talking points and Recommendations for Meeting

Attached are my talking points and recommendation for tomorrows NAPA meeting. I want to make sure they are also in the public record. I look forward to meeting with you and Don afterwards.

Regards,

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

ATTACHMENT:   NAPA 14_2013_TalkingPoints.docx

Available as separate links:
January 14 Talking Points January 14 Meeting Talking Points

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

DATE:  January 13, 2013

SUBJECT:  Comments RE the Advisory Council

As a former caregiver and an ardent advocate in the fight against Alzheimer's, I want to thank you for the excellent work that has been done thus far regarding NAPA. I'm hopeful that this year we will see adequate support and funding to implement your recommendations and turn our shared dream of NAPA and a world without dementia into a reality.

I understand that the Advisory Council consists of at least 22 members and meets quarterly to discuss the efficacy of government programs targeting the needs of individuals and caregivers coping with the consequences of Alzheimer's and related disorders. My request and hope is that the Advisory Council can be expanded to add/include individuals who have been diagnosed with dementia.

We know that stigma is a tremendous obstacle for individuals and families living with this disease. I personally experienced the very painful and isolating results of this in caring for both my father and my husband from 1984 to 2012. It is my personal belief that, if we truly hope to reduce stigma, improve care, and help the public fight against ADRD, we must have someone who is living with the disease on the Advisory Council.

I trust that you will act upon this recommendation and set an example for all that those with dementia continue to contribute and have capabilities, not just disabilities.

Thank you.

Lynda Everman

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

DATE:  January 12, 2013

SUBJECT:  Representation of ALS patients on NAPA

There's an old Middle Eastern saying, "If you want to know how good the medicine is, don't ask the doctor, ask the patient." I believe the same wise saying should apply to advisory committees.

For eight years I have counseled, wrote about, cared for Alzheimer's patients, and have done research in human information processing. I can attest that the perspective of someone with the disease is different from those who know the illnesses at arms length. This includes researchers, caregivers, and medical personnel.

I believe it is important to have someone on your committee who has Alzheimer's. Life as seen through any illness is different from life without it. It can provide a unique perspective to other committee members. The inclusion of Alzheimer's patients in the United Kingdom advisory committees has met with great success.

Having someone with Alzheimer's can give the committee a type of perspective that isn't possible from those without it. I suggest Michael Ellenbogen for your consideration.

Sincerely,

Stan Goldberg, Ph.D.

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DATE:  January 10, 2013

SUBJECT:  January 2013 Meeting Comments

My name is Terry Barclay -- I am a neuropsychologist and healthcare provider in Minnesota. Katie Maslow and I have been discussing some comments I was hoping to have circulated for the January 14th meeting. She mentioned that I should reach out to you to see if it was at all possible to have my comments read during the public comment section of the meeting. My statement below is less than 3 minutes long and I would be extremely grateful if you would be able to include it in your agenda. I understand that time will be quite limited.

Please see my comments below which are also attached in a formal correspondence to this email. I appreciate you circulating them to the advisory council and for considering them for public comment as well.

Please confirm receipt when you are able.

Sincerely,

Terry R. Barclay, PhD Clinical Director, HealthPartners Neuropsychology Investigator, Alzheimer's Research Center Minneapolis, MN

==========

RE: Public comment for January 14, 2013 meeting

Dear Members of the Advisory Council on Alzheimer's Research, Care, and Services:

My name is Dr. Terry Barclay and I am a clinical neuropsychologist and scientist-practitioner with expertise in aging and neurodegenerative disease. I want to extend sincere appreciation and congratulations regarding your efforts to date with NAPA, particularly as they relate to your work on recommended screening tools recently adopted by CMS that specifically provide options for physicians and other healthcare providers who wish to incorporate cognitive screening as part of the Medicare Annual Wellness Visit. These recommendations mark a significant step forward as many physicians were unsure how to implement formal cognitive screening in an efficacious and time efficient manner in the absence of any best practice guidelines or recommended tools.

Now that several tools for dementia detection have been clearly identified by NAPA and CMS, there is much work to be done to further assist providers in understanding the next steps that follow a positive screening result. Although many of us in the field recognize how straight-forward a dementia work-up can be, this understanding is, of course, not shared by the medical community at large. Like the recommendations for specific screening tools, we need very clear, structured, and straight-forward best practice recommendations for doctors concerning the work-up, diagnosis, and management of individuals with memory loss and dementing illnesses. Many physicians are still extremely reluctant to embrace screening because the "how" of working up and managing these patients remains unclear, too complex, and burdensome from their perspective.

To address these and related issues, the Minnesota State Legislature put forth a bill several years ago to establish a working group to make recommendations to help the state become more dementia competent. That work resulted in a formal report to the legislature and, subsequently, a new body was formed called ACT on Alzheimer's to take those recommendations and implement needed changes at the state, provider, and community levels. We were charged with tackling many of the same problems you are now trying to address at the national level, and our work has resulted in several tools and guidelines used locally that I believe could serve as a very useful "jumping off point" for the council's discussions concerning the next set of recommendations for physicians that focus on the necessary follow-up after screening.

Specifically, we have created what is called a "practice parameter" (please see attached document; http://www.alz.org/documents/mndak/toolkitsingle.pdf) which provides doctors with a streamlined, 1 page guideline on each of 3 topics: cognitive screening, dementia work-up/diagnosis, and disease management. The guidelines incorporate existing best practice recommendations in the field and are presented in a manner that allows one to fully appreciate the steps involved in efficient and appropriate dementia care. Moreover, they are easily adaptable to different settings and diverse practice groups. Importantly, this work involved many months of extensive small group discussions, focus groups, and meaningful exchanges with practicing physicians in an effort to identify common barriers to dementia detection and to then offer practical solutions to these barriers that are feasible in the current landscape of healthcare. We have also created brief educational modules and presentations that accompany the practice parameter document which have been of great use locally in teaching physicians about dementia care and demystifying dementia.

I and other representatives of Minnesota's ACT on Alzheimer's would be happy to share more information and materials with the council if deemed appropriate in the future. Again, my sincere congratulations to each of you for all of your hard work with NAPA to date.

Respectfully, Terry R. Barclay, Ph.D.

ATTACHMENT:   Terry Barclay NAPA Comments January 2013.pdf   Minnesota Provider Practice Parameter.pdf

Available as separate links:
Terry Barclay NAPA Comments January 2013 RE: Public comment for January 14,2013 meeting
Minnesota Provider Practice Parameter Provider tools for identifying and managing cognitive impairment

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