Public Comment Index for the National Alzheimer's Project Act . 2013 Comments

11/20/2017

2013 Public Comments

 


 

DECEMBER 2013 COMMENTS

M. Ellenbogen  |  12-03-2013

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.

ATTACHMENT:

J. Tilly made some comments about ACL and ADSSP programs. It sounds like some great things are starting to happen. I just hope they are involving people with YOAD in the creation of these programs.

During my time as an advocate I have made contact with people all over the world, and I have come to realize that there are some great and pioneering programs happening out there in the dementia arena. Some are based on scientific research, and some are not but they all have great outcomes. Unfortunately these programs go unnoticed by the majority of people. I have seen famous institutions try to invent a program from scratch, unaware that the same program had been established in the same area some time-ago. This wastes time, money and vital resources that can be better spent on other ventures.

A good example comes from a well-known scientist based on the west coast with whom I spoke with a few weeks ago. We were discussing a new trial he was considering perusing, a trial that he assumed was the first of its kind. However, I had previously spoken to a person on the east coast who had already started a similar program. Knowing that the program had already been established elsewhere saved the scientist time and money. This is a clear reason why it is vital that information be shared.

We must develop a way of sharing the best ideas from around the world, and at the same time educate people. An ideal solution would be to have an international information portal where people can share ideas, and upload information about programs that have been created. The site will have an administrator whose job it is to review the information provided.

The portal should be broken down into categories including location, type of program e.g. drug trial or meeting and who it suits best. Ideally there will have a top three recommendations. An already-existing government site would be an ideal place for this portal to be located.

At our last meeting I mentioned the need for dementia-friendly communities and businesses, and that I was in talks with a local hospital in my area. Well I am happy to announce that after two long years the hospital has now not only decided to create a dementia-friendly hospital, they have also decided to educate and engage the community so we can build a dementia-friendly community.

This vision has been shared with the committee and I hope that this program can be used as a model that can be rolled out across the US. I hope to put Doylestown PA on the map as being a true dementia-friendly community, because until we have a cure we must create environments that enable and encourage those living with dementia to live full and productive lives within our communities.

I believe the best ideas come from those directly impacted by dementia since they know what it's like to deal with this disease. So many like me can be true assets if given the opportunity to be included in the process. The sad fact is that many institutions and programs are not willing to include us which I cannot understand. How can you resolve the issues that affect us if you do not completely understand them all? Companies, organizations, health providers and the public need to be encouraged to use us as a resource.

By taking these steps we will start to eradicate the stigma that goes hand in hand with this disease.

Driving laws need to be changed to take into account those who are no longer able to operate a vehicle safely, but not to impact those, like me, who are still able to drive. First responders need educating, and a system needs to be created that will help identify a dementia patient.

In my opinion awareness continues to be the biggest problem for those impacted by dementia. 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 and not just associated with getting older. Education will lead to many other benefits.

While it is very important that people know that there is no cure; that those affected will die, there should be no excuse for not encouraging those who have the diagnosis to live life to the fullest. Having a diagnosis of dementia does not mean we lose our willingness to live, or motivation to contribute to society. We need opportunities to engage in meaningful activities throughout the course of the disease.

We should have the right to end our life in a dignified way. While this is still a taboo subject we must talk about these issues.

I hope you have read my vision. I welcome the opportunity to speak with you further and go into more details. My idea highlights the problems and points to a simple solution, but it's not the only solution. I leave that up to those who understand the system better then I. I just took a stab at it.

I would like to thank the committee for electing a member who has dementia. This is an important role, with a great deal of responsibility being placed on the elected member to represent us in an adequate manner. As a person with Alzheimer's who serves on the PA State committee I know how challenging it is to be a part of the process, and to communicate with the people I serve with because of my disease. We as representatives and advocates need to be effective, and as the disease progresses and renders us ineffective we need to have the strength and fortitude to step down, and allow another with the disease to take the reins. Mr. Moore, I wish you the best of luck, we are all counting on you. Please feel free to reach out to me and your friends living with dementia.

Good Luck we will miss you!


 

NOVEMBER 2013 COMMENTS

K. Schneider  |  11-19-2013

Alzheimer's Research UK is preparing for the exciting opportunity put forth by UK Prime Minister D. 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?


 

OCTOBER 2013 COMMENTS

M. Ellenbogen  |  10-29-2013

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


 

N. Karp  |  10-29-2013

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 http://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.


 

SEPTEMBER 2013 COMMENTS

E. Grady  |  09-20-2013

C. 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.

ATTACHMENT:

As the more than 300 residents of Villa Gardens, a Continuing Care Retirement Community in Pasadena, California, we witness every day the tragic decline of friends and family members affected by Alzheimer's and other forms of dementia. We write now to strongly support and ask you to support the National Alzheimer's Project Act (NAPA) enacted in 2011.

Dementia in its many forms, including Alzheimer 's disease, affects more than 5.2 million people in this country. Its cost in 2013 will total an estimated $203 billion, including $142 billion in costs to Medicare and Medicaid. Total payments for health care, long-term care and hospice for people with Alzheimer's and other dementias are projected to increase from $203 billion in 2013 to $1.2 trillion in 2050 (in current dollars). This dramatic rise includes a 500% increase in combined Medicare and Medicaid spending: $107 Billion in Medicare, $35 Billion in Medicaid, and $61 Billion in personal and other expenses. (These figures are taken directly from the 2013 National Plan.)

We feel certain that you are familiar with these figures but also recognize that there are many issues, both global and national, of critical importance on your plate right now. One is certainly the fiscal health of our country. We were delighted to see President Obama and Congress take a step in addressing this humanitarian need when they passed NAPA. We also believe that it is now a Congressional Imperative to make the funds available to accomplish what NAPA promises.

We ask you, a highly respected and influential member of Congress, to ensure that NAPA receives the financial support it deserves. While, as a nation, we respond to the humanitarian needs of the global community we must also respond, as we have not yet adequately done, to a need of tremendous significance and magnitude on our own doorstep.

We would also appreciate hearing from you about what you see as the probability of NAPA funding and any other steps we can take to support NAPA.


 

AUGUST 2013 COMMENTS

S. Mead  |  08-04-2013

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.


 

JULY 2013 COMMENTS

M. Sterling  |  07-29-2013

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/.


 

A. Parekh  |  07-26-2013

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 Dashboard provides 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.

 

M. Ellenbogen  |  07-24-2013

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


 

M. Ellenbogen  |  07-20-2013

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

==========

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.


 

P. Murphy  |  07-17-2013

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.


 

M. Ellenbogen  |  07-15-2013

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.

ATTACHMENT:

Dementia-Friendly Vision For State and National Implementation
By Michael Ellenbogen
July 2013

Outline of M. Ellenbogen's Dementia-Friendly Vision
For State and National Implementation

SECTION
Introduction
Public Awareness, Education & Engagement
Dementia-Friendly Communities
   Issues with Police: Weapons & Driving
Universal Symbol: The Purple Angel
Dementia-Friendly Hospitals
Dementia-Friendly Businesses
Financial Issues & Necessary System Change
Living Life with Alzheimer's Disease
Coping Strategies for Daily Challenges

Michael Ellenbogen's
Dementia-Friendly Vision

Introduction

As a person living with this disease I find it a challenge these days to be able to communicate with the rest of the team. While I appear to be very normal when we have short talks, there are many issues that I struggle with. I have lost the sharpness and quick response needed to be able to interact with you all at your level. It makes it even harder when many of you have very high IQs. With time you will learn that while I may not respond immediately, answers come to me many hours later. Sometimes they never do. When I hear conversations I do not hear the entire sentence but part of it, and in my mind I fill in the blanks. It's weird to know you have many answers in your head, but cannot find a way to retrieve them.

Because of all this, and because we are breaking up into various teams I want to ensure I will have the opportunity to share my visions of what I would like to see. Some of these ideas come from others who have created them before me, and many are my own ideas or a combination of both ideas.

There is no true order and some things may even be duplicated due to my lack of recall. I did have help from others in the editing of this document. Below is my short list of issues as I see them from my introduction statement on June 7th.

Public Awareness, Education, & Engagement

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 younger people who don't understand that Alzheimer 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.

The stigma must be eradicated.

Companies and communities must treat this like any other disability.

State laws needs 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 business.

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

Create work environments in which we can still feel productive without penalty to the employer or the person living with the disease.

We must encourage the researcher 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.

Dementia-Friendly Communities

My vision of a dementia-friendly community is a bit involved, but if it's implemented it will have a huge impact in many ways. When I think of a dementia-friendly community it refers mostly to those who are in the early to mid stages of the disease. This idea was first started in the UK by my friend N. McNamara who is living with Lewy Body Dementia.

This community should include first responders, health providers, local businesses, public transportation providers, airports, and the public.

I think the best way to achieve this is to create a system that allows individuals to register with the state, or someone of equal standing, this should include care partners as well as it's important to have emergency info on the caregiver. I would like to see something similar to MedicAlert at a state level.

What follows is a brief outline of the MedicAlert system.

MedicAlert® + Alzheimer's Association Safe Return® is a 24-hour nationwide emergency response service for individuals with Alzheimer's or a related dementia who wander or have a medical emergency. We provide 24-hour assistance, no matter when or where the person is reported missing.

  • If an individual with Alzheimer's or a related dementia wanders and becomes lost, caregivers can call the 24-hour emergency response line (1.800.625.3780) to report it.
  • A community support network will be activated, including local Alzheimer Association chapters and law enforcement agencies. With this service, critical medical information will be provided to emergency responders when needed.
  • If a citizen or emergency personnel finds the person with dementia, they can call the toll-free number listed on person's MedicAlert + Safe Return ID jewelry. MedicAlert + Safe Return will notify the listed contacts, making sure the person is returned home.

Six in 10 people with dementia will wander and/or get lost. A person with Alzheimer's may not remember their name or address, and can become disoriented, even in familiar places. For people with dementia wandering is dangerous, but there are strategies and services to help prevent it.

The Alzheimer's Association has developed training tools and support programs to prepare law enforcement, EMTs, fire fighters and other first responders when they encounter a person who is wandering.

Anyone who has memory problems and is able to walk is at risk for wandering. Even in the early stages of dementia, a person can become disoriented or confused for a period of time. It's important to plan ahead for this type of situation. Wandering and getting lost can happen during any stage of the disease.

Be on the lookout for the following warning signs:

  • Returns from a regular walk or drive later than usual
  • Tries to fulfill former obligations, such as going to work
  • Tries or wants to "go home", even when at home
  • Is restless, paces or makes repetitive movements
  • Has difficulty locating familiar places like the bathroom, bedroom or dining room
  • Asks the whereabouts of current or past friends and family
  • Acts as if doing a hobby or chore, but nothing gets done (e.g. moves around pots and dirt without actually planting anything)
  • Appears lost in a new or changed environment

The information on your medical alert bracelet will connect health professionals with your emergency medical information. We provide memberships and services designed to protect you and your loved ones during a medical emergency or time of need.

MedicAlert's medical bracelets, medical IDs, and other medical jewelry have been used to alert responders of the underlying medical conditions a patient may have - such as allergies, anaphylaxes, diabetes, and autism. First responders are trained by MedicAlert staff to recognize all forms of medical IDs, and our services ensure they get your up-to-date medical information, the moment they need it, to make informed decisions about your treatment and care. MedicAlert services and medical IDs are also used to communicate advance directives and can even help those with Alzheimer's or dementia make it home safely during wandering emergencies.

For more information please visit their website: http://www.alz.org/care/alzheimers-dementia-safety.asp

Those who choose to register would wear a bracelet similar to the one above or some type of dog tag on a chain. By registering the people would be able to take advantage of many benefits. Family would need to register and could be set up when in the clinic for diagnosis as well as info bracelet... ordered and resources given out.

All those registered would be given a unique identification number that will have basic information that could be used in case of emergency. To stop the system being abused or compromised, this information should only be accessible by the relevant people, following a secure procedure and calling a special telephone number and providing the person's ID number. (This would only be accessed by calling a provided number)

It may include information like blood type, allergies, drug information, doctors, emergency contacts, and addresses.

This system needs to be linked with the 911 systems, and the yellow dot program. When a person calls the fire department the address should be flagged immediately when it comes up as a person with dementia living in the residence they are being dispatched to. This is important for many reasons.

A person with dementia may panic in this situation and may not know how to respond to the emergency conditions. They may be much worse than a child in some cases, and just curl up in a corner in fear and just stay there. They may not even speak out when people are calling their name. They may have even started the fire and are scared. They could be combative and the firefighters need to know how to deal with that situation. There are many other reasons why the firemen need to be aware before arriving.

If we ever have some kind of a natural disaster or need to evacuate for some emergency this system will be a major asset, especially for those who may be at home on their own. By being registered this will insure a much better outcome for those who may not be able to think for themselves. Many of these people would not leave with just a simple call and they may not even understand what is said in robo-call type alerts.

If the police are called that should also be flagged immediately. It could be the person with dementia calling in, and not able to articulate the problem. It could even be a false alarm because they are scared when there is really no threat. Sometimes people with dementia have been known to make serious accusations of being threatened by their spouse with a gun, which has led to spouses being locked up for days because the system was not aware of the person's dementia. Again, if members of the emergency services are coming to a house where a person with dementia resides, they need to treat threats in a completely different way otherwise it can escalate and even become deadly.

Issues with Police: Weapons & Driving

While I am on the subject of issues with police there is a document which I shared with the chief of police a few years ago. While some changes are being implemented in some parts of the US, I am not sure they are being addressed in PA. I tried to reach out to my local police department and training facilities, but was just blown off. One of the biggest and most serious issues that I feel needs to be addresses is that of weapons. I came very close to taking my life, and even told a police officer on the telephone, but he refused to do anything. I just wonder how many other people pleaded for help and ended up killing themselves because nobody answered their cry for help. This is unacceptable.

Sometimes people with dementia get confused or feel threatened and may make accusations that could land someone else in jail. Be prepared to deal with cases like this. They need to be handled very differently from someone without dementia. Some would say like a mental illness. They believe what they are saying is fact.

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

If someone with Alzheimer's is stopped for a sobriety test they may fail because they have trouble following instructions or poor gait. They may also be much slower with their responses, and may even give you a blind stare because they are confused. They may not be able to follow complex directions. Directions need to be broken down into steps.

I know we want to make the roads safe so we need better testing methods for Alzheimer's patients who drive.

Alzheimer's patients can sometimes become very aggressive and defensive during an argument, they can even become threatening. This is the wrong time to try to remove them from their home. They need to be calmed down first; otherwise it can become a disaster for that person, because many will not understand what is going on.

Be prepared to deal with people who may seek help when they are lost. We can get lost while driving; this does not mean we cannot drive. These two issues are often confused by many.

The car should also have some sort of identification mark. It could be tied-in with the yellow dot system; however, I am concerned that we may become a target because of that. We are much more gullible because of this disease and that could be a very serious issue. I was someone who always kept all those scammers at a far distance, and now I am starting to fall prey to some and think it will only get worse as time goes on and I get worse. It could be on a driver's license, like a donor or class B license. It could be a code that is not obvious to all.

Universal Symbol: The Purple Angel

There is a common logo that is slowly becoming the internationally known symbol for those living with dementia and I think we should use it. It is called the Purple Angel.

To be used on all websites and dementia patients information and hospitals

For stores and businesses to show they know and have been educated

This was created by N. McNamara and is starting to get a lot of recognition. In fact it is now going to be used in some US hospitals as an indicator that the person has cognitive issues; they hang it on the door of the hospital room of the patient. I recommend that we adopt this symbol for all programs connected to dementia-friendly communities.

Dementia-Friendly Hospitals

While I am speaking about hospitals, below is a list of issues that I have been working on with a local hospital in hopes of starting the first dementia-friendly hospital in PA. I was trying to build a training program with the Alzheimer's Association along with a question and answer session with people like me who are living with the disease. Below is the list I have shared with them. Some hospitals are actually doing a quick cognitive test by asking 3 words upon registering to see if there may be a concern even if the person does not have a diagnosis. I would expect that all hospitals would educate staff on the issues, for instance we can easily get lost while trying to find a department as an outpatient.

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

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

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

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

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

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

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

There are special things one needs to know about using Anesthesia. Anesthetic agents are a cause for concern in AD pathogenesis. Luckily, the field of Anesthesiology has addressed these concerns in an excellent and honest manner. I would defer to their consensus statement:

http://www.anesthesia-analgesia.org/content/108/5/1627.full
http://www.mc.vanderbilt.edu/

The bottom line seems to be to avoid isoflorane.

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

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

While ordering food from a menu is simple, it is very overwhelming for me to keep track of things and what items may even go together, or are even needed. I will probably need help with this task.

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

Aides should not be the first point of contact. I am not always good at explaining what I need and the aide was not always good at interpreting what I was trying to say. Aides are okay for follow-up or to help with food menus. Again this is why training on all levels is so critical.

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

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

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

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

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

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

This is the wristband that will be implemented to all patients with dementia at Brooksville Regional Hospital, along with this square magnet to be place on the outside of the patient's room on the doorframe. Before any of these wristbands will be used, training seminars from the Alzheimer's Association will held for all of the hospital staff members. Training should start in about a month. This is a major step forward in maintaining the safety of all dementia patients during hospital stays.

The hospital loves the purple angel logo, We went through three different band designs before this. The problem being that purple is also the national color for DNR. What I love about it the most is that it's for "all dementias," which is what we truly need in the hospitals.

Dementia-Friendly Businesses

Moving on to dementia-friendly businesses; I envision that businesses take a 7 or 8 hour course provided for free by the Alzheimer's Association and others, to make them aware of the issues that people with dementia deal with, and what they may need help with. On completion of the course they will get a sticker that they can place in their place of business that says Dementia-Aware with a picture of the logo. By doing this we will be creating awareness, and educating many on how to make it easier for us to still function as members of society; something that is not always easy when you are an adult who is slowly becoming a child again.

Some of the issues may be

  • feeling panic in a large store when becoming separated from the person they came with
  • being asked a question and not being able to respond, or even giving the wrong information
  • having trouble locating items in stores
  • no longer being able to calculate how much they have spent or can spend if they have a budget
  • getting lost, losing sense of direction, or not being able to locate the car in the parking lot
  • it would be nice to get assistance when there are similar products to choose from, because I can no longer do comparison shopping based on price, or if an item in the same category is on sale

Not everyone will easily display, or even be willing to wear the bracelet or dog tag because of the stigma surrounding this disease. Only when this changes will people feel more comfortable about sharing their diagnosis with others.

Even though we are living with AD we should be encouraged to live life to the fullest. We need to keep our minds engaged. We should be able to work, and to still do high level functioning jobs, and the company not be penalized, and the person with the disease should not be impacted by SS because they are working. As volunteers I would expect that our transportation expenses be paid for, and maybe even lunch. This will have a positive impact on the people with the disease and be of great benefit to a company that can utilize the person. Some do not want jobs like pushing hospital beds around, or doing simple tasks when we have a high function skill set.

The state can help AD people to live life to the fullest in many ways. For those that are still driving they should be given a disabled sign for their car. It helps me in many ways such as finding my car when I park in a strange place or large lots. For those that are not driving, allow us the same opportunity as seniors. This will help us get around much easier. For suburban areas allow us access to the transportation for the disabled at the discounted rates.

The state can offer free access to national parks, fishing and boating for a small size water craft for the person living with the disease and a caregiver since in many cases they will need someone to take them. All of this can be centered on having the bracelet which will simplify the process and minimize any costs.

Keep in mind you need to make it simple for these people because they will most likely not be able to fill out many of the forms needed to qualify. I am sure there are many other things that can be made available.

Writing skills can be impacted hindering communicating. An idea would be to forward our unedited letters to schools to be used as a part of the English classes; the students would edit the letter and send it back so we can send it. It would also be great if we could take college courses for free with the idea that we are not getting a degree or credits.

When it comes to purchasing tickets for travelling on trains etc. staff need to be aware that we may need help. We may not be able to check in at the airport unaided. We should not be penalized for not being able to take advantage of online offers because we cannot use computers. We may need to be taken to a gate or to a temporary room until our flight or train is ready (this does not mean we need to be ferried about in a wheelchair!)

For further information about dementia friendly communities:

Dementia-friendly Communities:

I would like to see a simple pamphlet be put together for those who are living with the disease covering all the benefits available to us with AD. It must be simple to understand, short and to the point. The procedure should include all of the resources available and where one should turn. Today one has no clue and they do not know what is available. This should be handed out with a diagnosis from your doctor.

Laws need to change so those who are getting fired can collect the benefits they deserve. Let's stop burdening the social security system. Because there is no clear test for the diagnosis of YOAD, many diagnoses are delayed. Many people are terminated from jobs, and are unable to collect their long-term disability insurance, because of the two-year law. Most diagnoses occur much later, as in my case. I paid a lot of money into a long-term health disability plan in my company and I lost it all because of the law. I now get less than a third of what I would have been entitled to, and no medical coverage which I would also have had, all because of a law that does not work for individuals with this disease. Changes must be put in place until we have better tests available. If someone is terminated for non-performance and they have been diagnosed with dementia at a later time, they should have the right to go back at least six years to prove their case. Companies should not get a free pass because we all pay for this injustice. The two year law is a failure for people like me with dementia.

I was terminated from my job before I got a diagnosis which took another 6 years. Now I am forced to rely on government disability. Alzheimer's is a sickness. This is a disease, and the people who have it should be treated that way.

Companies need to treat AD like any other disability. The following comments were put together from a person who works in HR.

Tell your story to HR Management. What kind of company do they want to be? How will they protect their human resource that has dementia - and be good risk managers by taking appropriate action to minimize the risk of litigation for wrongful termination under ADA? What are the costs of unrecognized dementia in employees i.e., lost productivity, errors, quality, odd/unexplained behavior, a decline in management skills leading to more of the above? What are the State percentages? Give examples - If they are a company of 1,000 employees that equates to xx employees who will have early onset dementia - can they afford to be blind to the problems these individuals will cost the organization? Alzheimer's is not all about the needs of the caregiver. Little to no attention is given to the INDIVIDUAL WITH DEMENTIA. If the company has a PEP program (Personal Employee Program that typically provides 8 to 12 sessions of counseling when an employee suffers from personal problems (divorce, runaway kids, elderly care, etc.) why not have a Dementia Hotline/Exploration. Why not help people self-diagnose early and assist them to seek a medical diagnosis, so TOGETHER the employee and company can make a plan for them to ultimately exit from the company with dignity - example: an employee is still skilled, but may need to move from having the responsibility of being a manager to becoming an individual contributor. Why wait to FIRE someone for non-performance, when you could continue to employ the person until the day comes where there is no job which matches the employee's skills. A diagnosis of dementia IS protected under ADA. Why wait to be sued by an employee who was unfairly terminated because of his disability. Why not be proactive and humane, keep the person off unemployment; mitigate your exposure to litigation. Such a small cost to set up a program to assist and empower employees to work TOGETHER with them, give them dignity and determine together when it is time to go. Help them transition to retirement with disability; unemployment; assistance from the Alz Association.

Financial Issues & Necessary System Change

Younger-onset Alzheimer's, also known as early-onset Alzheimer's, generally refers to those who are affected by the disease before the age of 65, usually in their 40s or 50s. Because of their younger age and healthy appearance, doctors often attribute symptoms of Alzheimer's to depression or stress, resulting in delayed diagnosis. These symptoms, such as challenges with short-term memory, impaired judgment and difficulty making decisions, eventually progress to a point where they affect workplace performance, and ultimately, jeopardize employment. Many individuals living with younger-onset Alzheimer's are in their prime earning years and supporting loved ones at home. The loss of income and access to employer-sponsored health benefits can be devastating.

This document reflects State and Federal issues that may not be working. My goal is that if the existing jurisdiction responsible is not able to enhance the process, the other will step in and fill in the gaps so people are not impacted. It is my hope that they can work together to fix the weaknesses in the system that may have been overlooked.

To help address their financial need, many individuals with younger-onset Alzheimer's rely on Social Security Disability Income (SSDI), or Supplemental Security Income (SSI). In March 2010, the Social Security Administration (SSA) added early-onset Alzheimer's to its Compassionate Allowance Initiative, which expedites the disability determination process and serves as a trigger to begin the two-year wait for Medicare benefits for those under the age of 65. Family members (e.g. spouses and minor children) may also be eligible for benefits based on the applicant's work record. This addition by SSA has been a huge relief for individuals and families dealing with Alzheimer's.

Many are treated like they are crooks when they apply for Social Security Disability. It creates an added burden on the family and the patient. People say that the Compassionate Allowance act will help people, but it did not help me, and many keep saying that it works. The following story is from an ongoing case. This program may be better but the people who run the programs are clueless in many ways on what a person with AD can or cannot do. This person is not only struggling financially, but has no one to look out for them. I cannot even imagine the hell they must be going through because it would take me forever to complete the same forms.

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It's so nice of you to think of me. I wanted to add that the reason I was turned down on the first application and reconsideration was because I filled out the RFC form myself (I lived alone at the time and it was a necessity) and not for lack of medical evidence. My son now lives with me but only minimally supervises me and does the driving. An examiner at Social Security took it upon himself to send out an investigative unit because he felt I must be faking Alz even though in the course of the application and reconsideration, I saw 5 doctors, 4 of whom thought I had Alz disease and 1 CE examiner who thought it was possible but hesitated because I still have average intelligence (my IQ was in the 140s when I was in graduate school and now around 100, which I think this is an alarming decline). This SAA evaluator then proceeded to imply that all the doctors I saw were fooled. He even sent out an investigative unit to actually videotape me without my knowledge (following me to one my CE appointment one day and sending undercover police officers to my home the following day). I don't remember the investigators coming to my home and didn't see them at the hospital (obviously quite good at the stealth part). At the hospital, the doctor walked me out to the lobby because he was afraid I would get lost said a few minutes later I "disappeared (I got my ride, of course)." They went back to the doctor looking for me, and he apparently was very concerned I had actually gotten lost in the hospital. At my house, they said I walked slow to answer the door but I didn't limp (???) and was polite and had my hair combed (implying I was not disabled based on my outward appearance and probably less than 30 seconds of conversation). The evaluator felt that anyone who could describe their symptoms on an application, write mostly coherently, (though always needing multiple edits, spell check, and entailing a lot of repetitiveness) answer the door, use a phone, live alone, or drive in the early stages had to be faking it regardless of MRI, neurological tests, etc., that clearly gave me a diagnosis of EOAD. Long-winded, I'm sorry. I'm still feeling kind of abused and outraged. As for now, my lawyer thinks he can get me a hearing OTR and I'm hoping for that and a favorable decision If not, it will be another 12-15 months before I have a hearing date, this because the SSA evaluator apparently does not understand that early-stage Alzheimer's is not immediately visible on the surface. In the meantime, I am now in the process of selling my home to live with my adult son as we can no longer afford the upkeep (this is a modest home - but now far above my means).

I'm very lucky that my son is living with me to help, but it means I do not qualify for Medicaid because his income is now considered my income and puts us just above the income limit. He can't put me on his insurance as I don't qualify as a dependent because of my small LTD policy, which in turn needs to be repaid to the insurance company if I do get SSDI. I've gone from a single, self-supporting middle class woman, to lower middle class, now to poverty level in the course of about 4 years. Without my son's help, I'm probably within 3 months of living on the street. At the same time, I'm suddenly placing a tremendous burden on him and fouling up his goals in life.

Another note: I find it ironic that my neurologist tells me to exercise vigorously, take care of my health, and socialize as much as possible in order to function longer whereas I sense the government is telling me that I'm not eligible for disability insurance (despite working since age 13 and paying into the system for years) unless I give up, lie in bed, and wait to die.

It would be great if the Alz Assoc could find a way to educate the SSA evaluators on what Alzheimer's disease looks like in younger people in the early stages so that other people don't go through what I'm going through now. It would also be great if they could lobby for earlier Medicare benefits (rather than the 2 year wait after SSDI) for all disabilities that are only going to deteriorate.

Awareness is the biggest problem.

Awareness of YOAD will change the public perception of who gets Alzheimer's - young people. People who are under 30 get it. Use commercials, billboards or posters in key places to get the word out. The face behind the disease must change if we are going to get the public engaged. We must show younger people because most don't understand that Alzheimer is a disease not just a result of aging.

Awareness of outcomes for AD -- Currently people who have Alzheimer's cannot be cured. There is no way to slow the progression of the disease, and most die within 4 to 8 years of diagnosis. While these two statements are strong I feel this is what it's going to take to reach younger generations and others to jump in and help. We cannot beat around the bush; the public needs to know that this is a horrific way to die. Death by Alzheimer's is slow and painful not to mention the impact it has on the family. Places like the Alzheimer's Association and others need to open with all the facts about the disease so people are prepared.

Remove the negative stigma associated with the disease. Too many people are ashamed to let others know that they have this disease. They act like they did something wrong to get it. Now is the time to join me, come out of the closet, hold your head up and be proud in making a difference in how we are looked upon by ourselves, and others. WE need to show that we are still capable of doing some things at our own pace.

Driving laws need to change to remove the licenses of those that are no longer capable, while not impacting those that are still able to drive. It should be based on the person's true driving experience and ability, and not on perceptions or fears. It should have nothing to do with getting lost; GPS tracking devices can help us if that is a concern. Many people have the misconception that if a person with AD is in an accident the insurance company will not pay for the claim, or may even sue them. While there are many tests available to test one's driving, many are not fair to a person living with AD. In fact if the average person was given the same test they may even fail. Better tests that deal the individual living with the disease are needed and all must be able to test this test. Some of the cognitive tests do not correlate to driving ability, but to failing and singling out people with AD. That is completely unfair. For example I fail the Trail-Making Test, Part B and I still drive very good. The testing should be free or paid by insurance. These tests can cost around $300 -$350, and provide annually. Every 2-3 months we should drive with a spouse or other person who understands us to see how well we drive. That should be a regular part of our future lives, and they should be the ones to tell us when they feel it is time to give up driving. I am not saying that people with AD should not eventually stop driving, but it should be done for the right reasons -- that they will become a danger to them or someone else. What we need to focus on are the real problems of driving, and not the side issues related to them. We must embrace new ways to deal with people with AD and find new opportunities and technologies to use to our advantage so we can enhance the lives of those suffering with this disease, and so they can continue to lead a normal life for as long as possible. Do not fall into the one-size-fits-all trap because all those living with AD are different from each other and we must figure out a way to make everyone feel safe including those living with the disease. We are still human beings.

My biggest fear is that one day I will have an accident and my license will be taken away. It may not have anything to do with my Alzheimer's, but it will be perceived that way. I have had 3 to 4 car accidents in my lifetime, some being my fault while most were others. We all have them. As a person living with AD I seem to notice much more. I see many people run through lights, not use turn signals or come to a complete stop at the stop sign. I see people cut others off or shift in to other's lanes without paying attention. All I can think is that if people saw me do any of these things they would want to take my driver's license away, yet all of these folks are normal and they just get a free pass. Why?

Once we have a diagnosis, we should all be entitled to the same level of benefits no matter what our age is. One should not be impacted by other laws that were not designed or intended for those living with this type of disease. There are many state and federal programs that limit us from being able to contribute to or benefits we are not entitled to because of our age. Family savings should not be wiped out just because one has dementia. A family should have a cap on what they must payout. Why should the surviving spouse be left penniless because their partner was sick? Is it enough that most of us have already had to deal with financial hardship we were not accustom to?

Pa. Caregiver Support Program (care recipient/household income must be @ 200% of poverty or below for max. reimbursement.

Below are just of a few of the ways this disease is costing me more money than ever. I once did most things around the house and now I have to rely on others and the cost is adding up very quickly. Many things are becoming neglected which will have a greater cost in the long run. I used to be good at comparison shopping and now I no longer do it because I cannot recall the price so I can compare. This has such a huge impact from food, gas, utilities and everyday items.

Furthermore, under the Patient Protection and Affordable Care Act (PPACA), individuals with a pre-existing condition receiving SSDI can join high-risk insurance pools3 and receive immediate health insurance coverage while they wait for Medicare benefits to become available. This has been particularly helpful for those who are unable to find affordable health insurance because of their Alzheimer's diagnosis. The program will end in 2014, at which time individuals can purchase health insurance through their state-based insurance exchange or qualify for Medicaid under its expanded criteria. Pennsylvania has yet to decide whether or not it wants to participate in the Medicaid expansion, which according to one estimate, will cost the state 1.4 percent more than current spend to reduce the number of uninsured adults by over 40%.

In addition to the cost of care, Alzheimer's imposes an immense burden on families. Last year, there were an estimated 664,384 unpaid caregivers in Pennsylvania, providing 756,600,213 hours of unpaid care valued at over $9 billion. Unfortunately, the physical toll of caring for Alzheimer's also resulted in over $427 million in additional healthcare costs to unpaid caregivers in your state. To assist those who care for people with Alzheimer's in Pennsylvania, the state offers the Pennsylvania Caregiver Support Program. Preference is given to caregivers of care recipients who are 60 years or older, but eligibility was recently expanded to include care recipients who are 18 years or older. All care recipients must demonstrate functional limitation and financial need.

Regrettably, age is still a barrier to other support programs for individuals with younger-onset Alzheimer's and their caregivers. All caregiver support programs that receive funding under Title III of the Older Americans Act require care recipients to be at least 60 years or older. Likewise, Pennsylvania's Medicaid 60+ waiver and aging block grants are only available to those who are at least 60 years old. Restricting eligibility by age, rather than diagnosis, forces many families affected by younger-onset Alzheimer's to exhaust their own resources and put their own health and financial security at risk.

Health providers and institutions must change in many ways to make it better for those impacted. Physician education -- Doctors need to be better educated, and need to commit to a more timely diagnosis so that patients can collect the benefits they deserve and are entitled. Doctors should not act like our lives are over. Once a diagnosis is made it should automatically trigger a referral to a psychologist or psychiatrist so the person can learn to deal with the devastating news. Many people are in denial and waste that last few years not knowing what to do. Instead they should be living life to the fullest. Make the memories. We must be encouraged to make living wills and put our financials in order quickly since our minds are going. We have no time to delay. Encourage participation in medical trails and offer frequent checkups.

Living wills 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.

We must encourage research and provide funding. In order to eradicate this disease we need to find more sources of funding and redistribute current government funding to bring Alzheimer's to a level comparable to other disease research. Trials need to provide more flexibility by using technology. Many are unable to participate due to lack of flexibility. Some people do not participate in clinical trials because they feel it will not help them. They need to know that it's not about them but what they do can help someone in their family should they get the disease. Since a cure may be long in coming, it would also be nice to see more funding provided to investigate treatment methods to maintain independent function longer. The drug companies have taken the stage and it's all about what increases their profit and not necessarily about what will help the patients.

Make government grant programs free, fair and balanced - Some researchers using government research grants are discriminating by age and minorities because of rules being set forth by both the provider and the receiving researcher. This will prevent the formation of an accurate picture of this disease. For example, black people are twice as likely to get Alzheimer's. Why?

Eliminate the term Caregiver - Come up with a new term for the word caregiver when used for people in the following stages Very mild decline (2), Mild decline (3) and Moderate decline(4). We find it very demeaning and do not like being treated like a child. Help us where we are weak, but don't give up on us just because we have now been labeled with Alzheimer's.

We need away a way to break down many of the silos and built a coalition of companies and sites to work as one. Leaders Engaged on Alzheimer's Disease (LEAD) is a diverse and growing national coalition of 58 member organizations including patient advocacy and voluntary health non-profits, philanthropies and foundations, trade and professional associations, academic research and clinical institutions, and biotechnology and pharmaceutical companies. The only sad part is the Alzheimer's National has not joined due to not being able to set politics aside.

http://www.leadcoalition.org/

This is all part of the problem - a lack of willingness to work together. I am not sure what the state can do here but we need to find a way to encourage others to work in harmony for the greater good of what we all seem to claim. We are doing this for dementia. Sometimes I really wonder and I think it just a business for these folks.

I know I have made many recommendations around the use of the Alzheimer Association as part of this document. Because of that I want to give full disclosure. I was a past ESAG member and I am currently still an ambassador for them. For those who know me they would tell you I am not influenced by others and my dedication is to those impacted by the disease. With that being said I do feel they deserve a lot of credit for what they have accomplished in the last 30 or more years. They take a lot of heat for some issue that are out of their control due to some high level expectation of the public.

On the other hand I do not want you to think that they have all the answers because I and many others realize that they do not do justice for many like me who are dealing with the disease. They focus on the caregiver and not us. Part of the problem in my eyes is the lack of a business mind across the board, and lack of a CEO approach to business. Because of that scenario there is much inconsistency in the organization and much time is lost in understanding our needs and minds. That all leads to very slow response or lack of response to the very services they think are great. They have this internal mindset that everything has to be done a specific way and that is always the right way, yet the people are not given the tools. The sad truth- it is not and I have worked on changing some of that and I can assure you it's not an easy task. I encourage that we continue to work with them but at the same time we need to demand change and at a much faster pace.

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I am sharing this with you in hope that, as you do your planning, you take my findings in to account when making recommendations to others. We must treat all people who are suffering from dementia, regardless of stage, with the highest level of respect all the way through to the end. While this may not apply to all, it would appear that many who are even in stage seven are still able to communicate in some way.

Living Life with Alzheimer's disease

Below are some articles I have written in the past, you may learn how someone with AD is dealing with this disease. These are my favorite that I feel people have been able to learn and see another side that they did not know before.

I have worked on this for about five months, and recently I shared the email below with many sites related to AD for feedback. Most of those who had reached out to me were able to support my findings. The bottom line is that while most of us have limited thinking capacity many are able to communicate; we just have to find a way that suits the individual. I received a lot of feedback. My biggest concern is that most people are clueless, and assume that we cannot understand what they are saying about us; many say cruel things. Just try to imagine for a minute what it would be like to hear what others may say or do to you, and you are never given an opportunity to defend or express yourself. That is what is happening to most of these folks.

We must find a better way to educate caregivers, health professionals, and all those working with people living with this disease. The biggest problem I see is that everything is time-based because of the costs. This view will not work for people. It will also take special training, and the need to break with our normal habits of communicating. If we are going to be able to reach out to them, we need to change. We are still human beings and we deserve to be treated in a respectful and dignified manner.

My name is M. Ellenbogen and I have been living with AD much longer than most people who have had this devastating disease. I am in need of your help to prove a point. Let me explain.

I have learned that as we progress with Alzheimer's/dementia, we lose our brain functioning and can no longer think. I am starting to believe that this is not true.

It has now happened to me on multiple occasions where I was asked a question, and I am able to formulate the answer in my mind, yet I found myself unable to verbalize it. Sometimes my mouth may move but nothing comes out. It was the weirdest thing, and I could not understand why it was happening to me. I was aware of what was going on, but could do nothing.

Since that time I have asked 18 other people with some type of dementia, and of them 16 had similar experiences. Two of them said they had not. This makes me think that as this disease progresses our brain may still be functioning, yet it is unable to communicate with the rest of the body, allowing it to have less control than it would normally have. I truly believe I am on to something, and was curious as to how I can try to prove this theory.

Let me give you an example. About three years ago I met the daughter of a man with AD. He was no longer communicating with her because, she was sure, he could no longer commutate at all. Someone suggested she ask a question, and keep totally silent for at least two minutes after. About a minute and a half later he finally responded to her question. From that time on she realized what she had to do and was thankful for that advice.

I don't want you to think it's going to be that easy; it will take a lot of work, patience and persistence on your part. Here is what I would like others to try for someone who is in the late stages of Alzheimer's. First of all take the person to a very quiet room; it should not have any kind of background noise even from things like an air-conditioner blowing. Those noises are real problems for me, and would assume it will be a bigger issue for them. Such noises really have an impact on my ability to process and focus. You should also do this at a time of day that they are not tired. It becomes very challenging for us to try to focus and listen to what others say. It really becomes tiring, and we get burned out quickly.

When you start to speak to the person use short sentences, and pause in between them so they have time to process what you are saying. That is very important. Tell them that you think you have found a way to communicate with them. Tell them you are going to look at them closely for some sort of sign. It could be an eye movement, maybe looking to the right or left or down or up. It could be a smile. It could be a finger moving or a fist being made. It may even be them sticking their tongue out. I would start by focusing on parts of the body that may still show signs of control. You must become a detective and keep looking at various body parts for some sign. It may not happen the first time or even a second time. It may never happen and I could be wrong. But if I am right just think of the benefits that will come out of this for you and your love one.

Reassure them that you will continue to look for a signal and they should keep trying the best they can at their speed. Ask them a simple question like "do you love me? If yes lift your finger or lower your finger". Again you will need to keep quiet, and observe for at least two minutes. Keep doing this and try this with different parts of the body. They may not have control over certain parts, and that may be an issue. If you do see something make sure you point that out to them and ask them to do it again to insure they really are responding. If this turns out to work find a way to use that same body part to get yes or no responses from the person. Keep in mind that this may not always work and you may need to be creative. Maybe just keep the finger raised longer if they mean no, or tap it twice etc., but that may be too much to ask.

Also keep in mind if the person has not had any real dialog with someone for a long time this would also take more time. No matter what do not become discouraged, try this at least three different times on different days. Like I said this may never work and I have it wrong.

If this does work please reply to this site with your contact information so I can speak to you. If this works for a few it makes me believe that we need to treat these folks completely different to the way society treats them today. This will change so much about what people really believe is happening to our minds.

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"The Realities of Alzheimer's and Overcoming Stigma"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Please join me and Go Purple on Friday, Sept. 21 for World Alzheimer's Month. I wear a purple Alzheimer's bracelet every day. And for those living with Alzheimer's, stop focusing on what you cannot do and join me in the battle to advocate. We still have so much to give, and we need to use our skills at our own speed. There is nothing to be ashamed of. We are counting on all of you.

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Over the past few years I have visited many websites that talk about Alzheimer's/dementia. The one thing that they all have in common is that not one of them encourages those of us who have the disease to continue to live and enjoy our lives. While I realize AD is a progressive and devastating disease we are still here, we are still alive, so treat us that way. Do not write us off.

I have always been savvy when it comes to finances and have always been a saver. One day I was speaking to a friend of mine who has AD, and I was telling her how I did not want to spend a lot of the money I had saved, because I wanted to leave it for my wife for that rainy day. My friend told me: "This is the rainy day. What are you waiting for?" She was right, and that's exactly how I started to think.

Just because we are living with AD, does not mean we should curl up and think our life is over before it actually is. There is so much more we can still do to enjoy life. Make wonderful memories with your loved ones before the days turn ugly.

One thing I had always wanted was to own a convertible, so we purchased one. I wanted to drive it down to the Keys in Florida. I have a friend out in California who also has AD. She has an RV and had planned to travel around the country before she declined and was incapable of driving anymore. One day she mentioned that she was going to the Keys and I decided to meet up with her. I also wanted to go deep-sea fishing to catch a big game fish. Don't get me wrong I am not person who goes fishing, but it was something I have always wanted to do. I had looked into it and it was very pricy, but it has always been on my bucket list. I think we all have a list if we stop and think about it.

I had no real plans; I just wanted to go out and drive my convertible, to feel the fresh air and admire the beautiful scenery and enjoy nice weather. I had a great time. I had a permanent smile on my face. I decided to stay with my friend in the RV for a week and visit various campgrounds along the way. That was a whole new experience, and some of the places we stayed at had fabulous views.

It was great to be out on our own, not having to rely on caregivers all the time. We had some difficulties, but we were able to mange on our own. It cost me a few extra dollars along the way because when I purchased something I could not remember the price in order to be able to compare, and sometimes I took the wrong road and had to take the turnpike, but these were minor issues. This road trip made me feel so much better about me. It was good for my mind; I came back stronger because of what I had achieved.

This disease has a way of making you feel like you are no longer cable of doing things on your own. You lose your self-esteem and your self-confidence. After this trip I felt great.

I did have to opportunity to go fishing. It was such a beautiful day with perfect conditions. The fish were not really biting to begin with but it didn't matter I was just happy to be on a boat again. Then I caught a fish that was about 10-12 inches long. Then I caught a barracuda that was at least 18 inches long, and then one over two feet long. Not to long after that I got the big one, a king macro that was 42 inches long! You should have seen the smile on my face. It is memories like this that we need to be making.

My friend in the RV has decided that she will not just use her mother's china and silverware on special occasions. Instead she took them with her in the RV. It gives her pleasure to use them every day. How many of you have a wonderful expensive hand bag or nice watch, which you only use on a special occasion?

Life is short; take pleasure in using those treasured items now. Start to create your own bucket list, don't just write it, DO IT! There are many wonderful memories that you can still make. Make them now before it's too late. Stop focusing on the negative. Make these last few years be the best of your life. You must do this now, before your mind no longer works.

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Since being diagnosed with Young Onset Alzheimer's Disease I have dedicated much of my time to its advocacy. Over the years I have worked with many people in different parts of the world, and through my experience I have come to realize that a major problem in reaching a cure is our actions. The way we treat not only those who suffer from this disease but those who care for the afflicted, the focus on funding and research and the lack of communication and collective action. Although there are many brilliant people who are involved in Alzheimer's and Dementia action and research I feel that following some simple principals and plans we could bring about real change in the world of these diseases.

PARTICIPATION -- Patients, caregivers, family and friends must become advocates

FUNDING -- Unprecedented action from government and public sector is vital

TEAM WORK -- Organizations dedicated to fighting the cause must work together to reach a shared goal

RESEARCH -- It is imperative that professional medical research personnel work hand-in-hand with patients

LIVE -- Those suffering from the disease must learn to live happy and fulfilling lives

PARTICIPATION -- The government wants to hear from us! I have been doing this a long time and I am told over and over again by government officials that they need to have a clear idea of the numbers of people with Alzheimer's so they can make the appropriate changes to policy etc. In order for the government to do something they need to see people with the disease. I know people have busy lives but if we want things to change, patients, caregivers and friends need to start taking action.

How can you help? By getting involved! Write to the people who can help - government, health officials, and the press. But be mindful that you have to be persistent with these people, you have to fight. Can you imagine the impact if even a small percentage of the millions of sufferers took a little time to have their say?

FUNDING -- We must look at other funding models for this disease. Unlike HIV and cancer, there are no survivors. Patients will continue to place a massive financial burden on the national economy; we need to be more proactive in how we fund research, care, medication and support for loved ones and caregivers.

How can you help? By writing to Congress, and the National Institute of Health. These people are responsible for prioritizing the distribution of funds to critical diseases - Alzheimer's disease is not on the list; we need it on the list.

TEAM WORK -- There are many organizations out there hosting their individual fund raising programs, which is to be commended but the downside to this is that they still insist on operating independently on one another. These people need to see the bigger picture, they need to set aside their politics and differences, and come together as one and work together -- after all, they share the same goal don't they?

How can you help? Well we can stop complaining about these organizations and give them solutions and guidance. Together we have the power to bring about change. Keep informed of all the latest news and action, don't listen to gossip or rumor -- check the facts; do your homework.

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My name is M. Ellenbogen. I am living with Alzheimer's disease. I spend almost every waking hour advocating for increased funding for research that will improve the treatment of this dreadful disease. In 2008, at the age of 49, I was diagnosed with Alzheimer's disease after struggling to get a diagnosis since my first symptoms began at age 39. There are more than five million Americans now suffering from this devastating disease.

The National Institutes of Health (NIH) funds research into critical and devastating diseases such as cancer and HIV/Aids. Yet there is much neglect and discrimination regarding the allocation of funds for research into Alzheimer's and related dementias. As a person who experiences the devastating impact of Alzheimer's disease every day I hope that research will lead eventually to postponing the onset or slow the progression of this disease, if not prevention and cure.

Currently, Alzheimer's disease only receives about $450 million for research from NIH, compared to more than $5 billion for cancer and more than $3 billion for HIV/AIDS. I am astonished at the lack of funding dedicated to addressing the number one health epidemic. Historically, leadership from the federal government has helped lower the number of deaths from major diseases such as HIV/AIDS, heart disease, stroke and many types of cancers. This past experience provides hope that increased efforts directed at Alzheimer's disease will be met with similar success.

There are many more Americans living with Alzheimer's than HIV; more funding is desperately needed. If we do not act now this disease has the potential to bankrupt this country. Money allocated today will have an enormous return on investment if it leads to the kind of successes obtained for other diseases.

If you have not yet been touched by this devastating and debilitating disease it's just a matter of time. I hope that my advocacy will help prevent future generations having to suffer my fate and that of many others. You can help by increasing NIH funding for research on Alzheimer's disease and other dementias.

I appeal to members of the House of Representatives, the Senate and the respective appropriations committees: Make the hard choices; increase funding for Alzheimer's disease. Do everything necessary to ensure that Alzheimer's disease gets the exposure, commitment and funding necessary to change the course of the disease before millions more Americans are affected.

My work as an advocate has provided opportunities to share my story on a national platform. I have provided public comment during meetings of the Advisory Council on Alzheimer's Research, Care and Services in addition to having my personal essay about overcoming the stigma of the disease featured in the Alzheimer's disease World Report 2012. I have also become a member of the Alzheimer's Association National Early-Stage Advisory Group, helping to raise awareness of the disease and provide insights on the most appropriate programs and services for individuals in the early stage of Alzheimer's and other dementias.

I hope that what I am doing now will allow me to leave this world knowing that I have done everything possible to make generations to come have a fighting chance. Do not forget these people or the future generations who will develop this disease. We face dying in the worst possible way.

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As an Alzheimer's patient, I find it very difficult to perform tasks that I was once very capable of performing. Sometimes I am better than other times at doing the same task. People around me have accepted this fact and have tried to be very forgiving when I run into issues doing a task or when just trying to remember something. I really think that people around me should challenge me more at times.

For example, many of my doctors kept questioning me about whether or not I should still be driving. This of course was mentioned to my wife who also started wondering. I finally had a driving test a few years later. It was recommended that I no longer drive, even though I passed the test. I was almost borderline, but there was concern that I may not recognize when I become worse and could then become a danger. First of all, I have to tell you that the test they performed was not fair. I wonder how many regular people would be able to pass this test. The test also relied on me to learn new things in order to take the test. That is not fair since I have been driving the same vehicle all this time and nothing has changed. This constant talk about my driving has totally killed all of my self-esteem about driving. Every time I was in the car on the road with my wife, she constantly pointed out any mistakes I made, and her reaction time was much quicker than mine. I do realize I am a bit slower in my response time, but that is why I give myself more space between the other cars. Sometimes I am very far back or I just don't want to go around that slow car. There is nothing wrong with not feeling comfortable to go around that person. Let me do it at my speed.

I see many people on the road that I feel are so much worse than me and I wonder why they are still on the road, if I am supposedly so bad. I decided that I was going to drive to visit my daughter in South Carolina. I live in Jamison, PA in Bucks County. I was very scared to take this trip but I was trying to prove something to myself. It could have meant the end of my driving if I made a serious mistake along the way. I drove in one day, about 700 miles, with the help of a GPS in my car. The more I drove, the more I was starting to feel comfortable behind the wheel. A few other people on the road made serious mistakes along the way and I easily avoided a possible accident. This trip was the best thing I could have done for myself. I now have almost all of my self-confidence back and my wife no longer makes constant comments about my driving, unless I have a real issue. I have now had two close calls that required quick thinking and maneuvering to avoid an accident. In both cases, I was able to avoid the issues without my wife's comments. Again it may have taken me an extra second or two to react, but I was fine.

Coping Strategies for Daily Challenges

Because of this situation, I feel even stronger than ever that it is important to be challenged. I know it may be easier for you to do something for an Alzheimer's patient because it's much quicker for you to accomplish the task. But I really believe that if you take the time to coach us along the way, we may do better in the long run. Believe me, I know it's got to be very aggravating at times, but I really appreciate it. It takes a lot of patience on the part of the helper. Everyone is different and you need to know at what point in time you should not push. It's also hard to be patient and not raise your voice at the person you are trying to help, because it will only make it worse.

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Daily Challenge: I have trouble remembering dates or things I need to do.

Coping Strategy: I use my computer and Microsoft Outlook to keep me straight by sending me reminders.

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Daily Challenge: Getting email using regular places like Google or Yahoo is a challenge for me.

Coping Strategy: My daughter had set up my Outlook to retrieve emails from all my accounts, and they arrive in the same format which makes it so much easier to read, and it allows me to use common folders.

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Daily Challenge: I forget to reply back to people's emails.

Coping Strategy: I flag them with a reminder date so it will automatically send me a reminder.

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Daily Challenge: Remembering passwords is a real challenge for me.

Coping Strategy: I have created a personal system that works great, I also rely on the computer to store many of them; however, it is a real challenge when the system does not work. I also keep files with the password information.

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Daily Challenge: I have trouble remembering the day, the month and the year.

Coping Strategy: I have watch that displays all the information.

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Daily Challenge: I have an extremely complex TV, stereo and entertainment system, which requires many remotes and settings to be used.

Coping Strategy: I purchased a smart remote that allows me to put in all the steps at once, and press one button which takes care of sending all the commands to all the devices at once. It works great until it fails. Not sure how much longer I can maintain it. It's a bit involved

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Daily Challenge: Most of my lawn power tools are a struggle to use.

Coping Strategy: I do not think I have any coping method other then I keep trying different things until I get them to work. The problem is most are new, I find it easier to work with tools I am familiar with.

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Daily Challenge: When I drive I don't always feel as comfortable behind the wheel.

Coping Strategy: I sometimes need to take more precautions, and allow more distance between the car in front of me, and I may drive a little slower. I am also much more alert and focused during these times. It makes it hard because when I travel with my wife she wonders why all of sudden I drive slower, when normally I am flying. There is nothing wrong with going slower and being cautious.

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Daily Challenge: I don't do much of anything anymore.

Coping Strategy: The other day I was speaking with my neighbor who was waxing his car. This gave me some inspiration to want to do it. When people mention things to me it sometimes gives me what I need to take it to the next level.

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Daily Challenge: I purchased a camera; however, no matter how many times I read the manual I still don't seem to be able to understand how to use it.

Coping Strategy: Make sure you buy one that works completely automatic without needing to do anything. It is frustrating at times when you would like to do something on your own but just can't remember on how to do it. I have learned to accept it but I still try and fail.

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Daily Challenge: Spelling and forming sentences has become a real challenge.

Coping Strategy: I take advantage of using the computer to guide me in the correct spelling of a word. That is becoming harder because often it cannot figure out what I am trying to say. I also ask others to look things over for me, and to correct them for me. It's kind of frustrating for me because I am really concerned that I may not be able to do this much longer. I have seen a big decline in this over the years. I seem to notice this more than my other skills because I do it so often. While I am sometimes ashamed of sharing it with others, I still need to communicate so I try to not think about it.

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Daily Challenge: Sometimes when I want to do certain things I need to stop and think.

Coping Strategy: If I want to work on a project I will spend a lot of extra time trying to think of the best approach, this doesn't always help, but I tend to work at a slightly slower pace and am aware that things will go wrong.

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Daily Challenge: Finding past emails or letters

Coping Strategy: The computer is such a wonderful tool in so many ways. It allows me to search the entire computer as long as I can remember a word or two in the document I am looking for. While it may take a while I would not be able to survive without it.

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Daily Challenge: I can no longer do many things

Coping Strategy: I rely on my wife for many things nowadays. I am not sure if that is a coping strategy. When anything important needs to be considered, I ask her for her help. She does all the financials, and planning of most things. It is frustrating but I realize I cannot do it on my own.

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Daily Challenge: I get lost or cannot figure out how to get from one place to another. Maps are not easy to follow anymore even the ones that you print out from Google.

Coping Strategy: GPS! I cannot imagine what it was like for people like me before GPS and the computer.

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Daily Challenge: I fear that one day I will be lost or not be able to communicate with others due to a temporary stress or decline in my mental capacity.

Coping Strategy: I have chosen to not be concerned about that. I have a medical tag on me all the time that has my medical condition along with important contact information. I will continue to go wherever I want to go. I realize I will need to rely on others to get there. I will need to ask others for help frequently, and to ask multiple times so others don't send me down the wrong path. It will take me longer to get there, but I cannot let that stop me. Living in fear is also no way to live. I know there are good people that will help me when the time comes.

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Daily Challenge: Some things I do get me very frustrated

Coping Strategy: I no longer try to do those things so I do not get frustrated

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Daily Challenge: I write notes as reminders

Coping Strategy: I only write a few notes as if I have too many they just become overwhelming, and I would lose track of them because there are too many.

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Daily Challenge: I need more time to do things

Coping Strategy: I leave much earlier for meetings and places so I can allow for issues along the way.

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Daily Challenge: If I start to get frustrated doing something.

Coping Strategy: I move on to something else and then I try to come back and do it later.

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Daily Challenge: I fear I may get lost when I go to new and far places.

Coping Strategy: I take a cell phone with me.

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Daily Challenge: When I go shopping and lose track of the person I am with I sometimes start to worry a little bit.

Coping Strategy: I try to calm myself down and look for them. If I cannot find them I will try to stay by the door we came in so I can see them at that register

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Daily Challenge: I had trouble remembering which way to turn off the water in the garage for the hose.

Coping Strategy: My wife added masking tape with a marking pointing to off. No more issues. I have the feeling that over time I will need many reminders like this.

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Daily Challenge: I have trouble hearing people speak in loud places.

Coping Strategy: I try to not go to restaurants or other places where I will be put in that situation if I can help it.

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Daily Challenge: I can no longer use my video recorder.

Coping Strategy: I now have TiVo which makes it so much easier to do things. I still need some help, and my wife can help when I need it.

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Daily Challenge: I try to communicate with much smarter people.

Coping Strategy: I believe that my reaching out to and working with people who are very smart will delay the deterioration process.

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Daily Challenge: When I cut the grass, or do something that requires me to be a bit more stable on my feet.

Coping Strategy: I use a good pair of shoes, or even a low cut boot. It really helps me become more stable on my feet.

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Daily Challenge: I could get hurt while doing yard work.

Coping Strategy: I do not wear lose clothes or short sleeved clothes when doing yard work so I do not get hurt. Wearing shorts has already led to a broken foot because the pants leg got caught on the shifter. I also wear safety glasses. The problem I have is I don't always remember to take these precautions, or sometimes I think it's not necessary because I feel I will be careful if I am doing something that will just take a few minutes.

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Daily Challenge: Just the other day I was thinking in my head that I had to turn a grate on my fireplace, and I was thinking it may be hot.

No Coping Strategy: Instead of being careful and just putting one finger closely to feel for heat, I just tried to touch it with three fingers to lift -- I got burned. How do you get a copping strategy for becoming stupid? It seems that my mind is not communicating with the rest of my body.

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Daily Challenge: ???

Coping Strategy: All the people around me know I have AD, so most of them are keeping an extra eye out on me which is nice to know.

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Daily Challenge: ????

Coping Strategy: I try to keep some type of a schedule. I get up every day at the same time and try to eat at the same time. This kind of helps to do things like taking my drugs or other things. The second I change my routine you can be sure I will forget to take my drugs or do something else.

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Daily Challenge: ????

Coping Strategy: I double and triple check myself on many things I do. Daily Challenge: ???? Coping Strategy: I try to find some humor in my issues.

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Daily Challenge: ?????

Coping Strategy: I ask people for help and ask a lot more questions of others

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Daily Challenge: ????

Coping Strategy: I take lots of breaks

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Daily Challenge: ???

Coping Strategy: I try to know my limits and will not start a task if I feel I cannot do it. Or I will have someone work with me.

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A few months ago one of my friends mentioned that I am always talking about things related to Alzheimer's. While I know I spend my days advocating for this disease I did not realize I was that bad. Especially with those I am not trying to convince or influence. Although I appreciate the person telling me, it has really bothered me.

I started to give it some thought and tried to understand why and what I could do to change that. Not too long after that my wife made a similar comment, and that really hit home because their comments to me were so close together.

I realized many things have contributed to this. The most important is I no longer work and I feel like I am locked in this house; I really have nothing else to do. I wish I could still be working and doing something meaningful, but unfortunately my skills required to perform those jobs are no longer there because of my Alzheimer's. I use to go to work, I used to talk with others about many different topics, not just work but everyday world issues.

I have tried to have similar conversations with people about issues in the news, and I don't always have the right information since I don't always understand it all, and only retain bits and pieces. While there was a time I was a news junkie, now I can rarely recall many of the topics or even can tie other stories together in my mind so I can speak intelligently. I have recently found myself starting discussions that go south because I start out with part of a subject, and when we delved into it deeper I was at loss for information. I felt stupid because I could no longer speak about something I once found very easy. I used to be great about talking about political issues which really requires you to know what you are talking about, but now I can barely defend my position, and I do worse for even bringing the subject up, and then I feel bad because I was not able to point out the real issues so the person could really make a true assessment.

Since I have no real job I have made it my mission to advocate for Alzheimer/dementia. I try to keep my mind as engaged as possible. I also try to focus on things that most don't, like the high hanging fruit which is probably not the best for some on like me. That involves dealing with many high-level people. While I do good at first I don't always have the answers they require, and sometimes may come across as not knowing what I am doing. It is very frustrating knowing that in my brain I have the answers, but I just do not know how to retrieve the information needed to help me do what I need to do. Especially when I need it the most, I may remember later on sometimes, but it's too late. There was a time that I could retrieve everything to my favor and keep track of everything one person would say to me.

Then I finally realized I listen to the weather report multiple times a day and I never seem to know what the weather is supposed to be like, which I always use to know. I just do not seem to retain it.

I use to like reading the paper and I no longer do that because I have trouble retaining what I read or I don't remember how the story relates to something I read a few paragraphs back in the same article.

I used to have hobbies that I can no longer do because of the disease. I use to love boating and tinkering with electronics. I can no longer do any of these things. I rarely do anything around the house because I am afraid I will make it worse.

When I have conversations with others I do not always remember what we have spoken about in the past. I always hated it when you spoke to certain people and they keep repeating the same information you had spoken about in the past. I do not want to become one of them. There are so many discussions I want to have but I just can't because the lack of my ability and more. I miss that so much. To have an intelligent conversation with someone that can reply with meaningful information, where we both walked away with some new and interesting facts would be wonderful.

I was never one to blow my own horn, but I do that today so others can see some of the steps I have made in hopes that they feel they are willing to take risks and help me expand my mission.

I have accomplished some great things and I think that is what I may share with my friends. Maybe I am repeating myself and I don't know it. I keep trying to figure out how I can change, but I struggle because I do not know what to do. It seems that Alzheimer's has taken over my life and not sure what or how to change.

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The original is from the NAPA meeting presentation from our counterparts which I really liked.

D   Diagnosis
E Early identification
M Management of symptoms
E Effective support for carers
N Non drug treatments
T Treatment of medical conditions
I Information
A At, and towards, end of life

Modified version.

D   Diagnosis
E Early identification
M Management of symptoms
E Education and Effective support for carers
N Non drug treatments
T Treatment of medical conditions
I Informational systems Free & Accessible
A At, and towards, end of life Acceptance learning to live with the disease

 

S. Stimson  |  07-02-2013

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

ATTACHMENT:

National Alzheimer's Project Act
Meeting July 19th 2013

Please see below the HHS 2013 recommendations and National Council of Certified Dementia Practitioners and International Council of Certified Dementia Practitioners recommendations for items pertaining to HHS numbers 14, 16, 18, 21 and 22 and education related items.

HHS 14: Develop a unified curriculum for primary care practitioners to become more knowledgeable about AD and enhance the skills necessary to deliver dementia capable care.

HHS 16: Form a blue ribbon panel of experts on advanced dementia to develop innovations in clinical care practice and quality, including palliative care, for people with advanced dementia.

HHS 18: States should assure that they have robust, dementia capable LTSS systems.

HHS 21: State education and health agencies and others should include key information about AD in all curricula for any profession or career track affecting LTSS.

HHS 22: State, local and private sector organizations should ensure that paraprofessional caregivers in every venue are adequately trained and compensated.

National Council of Certified Dementia Practitioners NCCDP / International Council of Certified Dementia Practitioners ICCDP Recommendations:

NCCDP is recommending that the HHS include in the July 19th 2013 meeting of NAPA recommendations;

NCCDP is recommending that Alzheimer's disease and dementia education be provided by a Certified Alzheimer's Disease and Dementia Trainer who has completed at minimum 12 hours of dementia education by a national training company who provides training for in-service directors and trainers, a Train the Trainer program that includes but not limited to; dementia / Alzheimer's disease overview, diagnosis, prognosis, treatment, medications, behaviors, wandering, hoarding, sexuality, cultural diversity, nutrition, death and dying issues, types of dementia, depression, etc.

NCCDP recommends that the National Council of Certified Dementia Practitioners and International Council of Certified Dementia Practitioners are added to the list of organizations that provide dementia education.

NCCDP is recommending that dementia education be required of all health care professionals and front line staff which includes but not limited to Physicians, Medical Directors, Pharmacists, Consultants, Activity Professionals, Recreation Specialists, Administrators, Assistant Administrators, Occupational Therapists, Physical Therapists, Speech Therapists, Nurses, Nursing Assistants, Personal Care Assistants, Home Health Aides, Dietitians, Social Workers, Clergy, Dietary Workers, Universal Workers, Housekeepers, Maintenance Workers, Security Guards, Bus Drivers, Mental Health Workers, MDS Coordinators, etc., All health care workers and front line staff who are currently working in Hospitals, Nursing Homes, Assisted Living, Adult Day care, CCRC, Hospitals, Home Care Agencies, , Hospice Agencies, Management Companies, Hospitals, Rehab Centers, Memory Centers, Boarding Homes, Adult Foster Homes, Senior Centers, Independent Living, HUD Housing, Shared Housing and any other geriatric setting and that the dementia education at minimum will consists of 12 hours of LIVE dementia education and an additional LIVE 8 hours that includes abuse and neglect and presented LIVE by Certified Alzheimer's disease and Dementia Trainers

NCCDP recommends that all new staff (new hires) are required to have this education prior to beginning work or assignments.

NCCDP is recommending that all employees who work in any health care industry such as; associations, aging government office such as the Ombudsman, Office On Aging, State Offices who have Surveyor's, etc., are all required to have a minimum of 12 hours live dementia education at minimum and an additional LIVE 8 hours of education that includes abuse and neglect and presented LIVE by Certified Alzheimer's disease and Dementia Trainers

NCCDP is recommending that all learning institutions, trade schools, universities and two year colleges who provide any type of health care curriculum such as Nursing Assistant, Occupational Therapy, Physical Therapy, Speech Therapist, Certified Therapeutic Recreation Specialist, Social Work, Nursing, Physician, Pharmacist, Dietitian, etc., either as a certificate program, registry program, licensing program or a degree degree will be required to provide 12 hours of dementia education and 8 hours of abuse and neglect classes prior to graduating from the program. NCCDP is recommending that the dementia education be taught live by a Certified Alzheimer's disease and Dementia Trainer.

NCCDP recommend mandatory 6 hours minimum of dementia education for all First Responders which includes but not limited to Law Enforcement, EMT's and Fire Fighters because they are often the first professional in the home during a crisis and they need dementia education so they are equipped to respond to a confused or disoriented individual. NCCDP recommends the education is provided by a NCCDP Certified First Responder Dementia Trainer CFRDT.

NCCDP recommends that the health care professional, front line staff and organization have the ability to select which company, college, trade school or private trainer to provide the Alzheimer's disease and dementia education and no one should be forced to select from a pared down list of a few institutions regardless of the organization private or nonprofit status. The public should make a choice based on the reputation, experience and knowledge of the organization presenting the dementia education.

NCCDP recommends that HHS put together a comprehensive list of institutions, technical colleges, organizations, consulting companies, private trainers and companies who provide Alzheimer's disease and dementia education and companies should be allowed to add their name to the list of providers with no endorsement from HHS. HHS should not recommend nor endorse one organization, trade school, university, private trainer, etc over another.

NCCDP recommends that HHS not put any kind of stipulation on a training program nor require that a training program be evidenced based. HHS should recommend what topics a comprehensive curriculum includes.

NCCDP recommends that ADEAR be expanded to include more information and resources for health care professionals to utilize rather than develop another national repository.

NCCDP recommends that ADEAR provide a list of USA and international organizations of what they provide and products, resources, learning materials, assessments currently available and includes but not limited to state organizations, institutions, organizations, companies, etc.

NCCDP recommends that no money be put aside for HHS to develop a national Alzheimer's disease and dementia repository when ADEAR already exists.

NCCDP recommends that more organizations that are providing Alzheimer's disease and dementia training are added to the NAPA sub committees.


 

JUNE 2013 COMMENTS

M. Ellenbogen  |  06-17-2013

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

ATTACHMENT:

I am sharing this with you in hope that, as you do your planning, you take my findings in to account when making recommendations to others. We must treat all people who are suffering from dementia, regardless of stage, with the highest level of respect all the way through to the end. While this they may not apply to all, it would appear that many who are even in stage seven are still able to communicate in some way.

I have worked on this for about five months, and recently I shared the email below with many sites related to AD for feedback. Most of those who had reached out to me were able to support my findings. The bottom line is that while most of us have limited thinking capacity many are able to communicate; we just have to find a way that suits the individual. I received a lot of feedback. My biggest concern is that most people are clueless, and assume that we cannot understand what they are saying about us; many say cruel things. Just try to imagine for a minute what it would be like to hear what others may say or do to you, and you are never given an opportunity to defend or express yourself. That is what is happening to most of these folks.

We must find a better way to educate caregivers, health professionals, and all those working with people living with this disease. The biggest problem I see is that everything is time-based because of the costs. This view will not work for people. It will also take special training, and the need to break with our normal habits of communicating. If we are going to be able to reach out to them, we need to change. We are still human beings and we deserve to be treated in a respectful and dignified manner.

I have been living with AD much longer than most people who have had this devastating disease. I am in need of your help to prove a point. Let me explain.

I have learned that as we progress with Alzheimer's/dementia, we lose our brain functioning and can no longer think. I am starting to believe that this is not true.

It has now happened to me on multiple occasions where I was asked a question, and I am able to formulate the answer in my mind, yet I found myself unable to verbalize it. Sometimes my mouth may move but nothing comes out. It was the weirdest thing, and I could not understand why it was happening to me. I was aware of what was going on, but could do nothing.

Since that time I have asked 18 other people with some type of dementia, and of them 16 had similar experiences. Two of them said they had not. This makes me think that as this disease progresses our brain may still be functioning, yet it is unable to communicate with the rest of the body, allowing it to have less control than it would normally have. I truly believe I am on to something, and was curious as to how I can try to prove this theory.

Let me give you an example. About three years ago I met the daughter of a man with AD. He was no longer communicating with her because, she was sure, he could no longer commutate at all. Someone suggested she ask a question, and keep totally silent for at least two minutes after. About a minute and a half later he finally responded to her question. From that time on she realized what she had to do and was thankful for that advice.

I don't want you to think it's going to be that easy; it will take a lot of work, patience and persistence on your part. Here is what I would like others to try for someone who is in the late stages of Alzheimer's. First of all take the person to a very quiet room; it should not have any kind of background noise even from things like an air-conditioner blowing. Those noises are real problems for me, and would assume it will be a bigger issue for them. Such noises really have an impact on my ability to process and focus. You should also do this at a time of day that they are not tired. It becomes very challenging for us to try to focus and listen to what others say. It really becomes tiring, and we get burned out quickly.

When you start to speak to the person use short sentences, and pause in between them so they have time to process what you are saying. That is very important. Tell them that you think you have found a way to communicate with them. Tell them you are going to look at them closely for some sort of sign. It could be an eye movement, maybe looking to the right or left or down or up. It could be a smile. It could be a finger moving or a fist being made. It may even be them sticking their tongue out. I would start by focusing on parts of the body that may still show signs of control. You must become a detective and keep looking at various body parts for some sign. It may not happen the first time or even a second time. It may never happen and I could be wrong. But if I am right just think of the benefits that will come out of this for you and your love one.

Reassure them that you will continue to look for a signal and they should keep trying the best they can at their speed. Ask them a simple question like "do you love me? If yes lift your finger or lower your finger". Again you will need to keep quiet, and observe for at least two minutes. Keep doing this and try this with different parts of the body. They may not have control over certain parts, and that may be an issue. If you do see something make sure you point that out to them and ask them to do it again to insure they really are responding. If this turns out to work find a way to use that same body part to get yes or no responses from the person. Keep in mind that this may not always work and you may need to be creative. Maybe just keep the finger raised longer if they mean no, or tap it twice etc., but that may be too much to ask.

Also keep in mind if the person has not had any real dialog with someone for a long time this would also take more time. No matter what do not become discouraged, try this at least three different times on different days. Like I said this may never work and I have it wrong.

If this does work please reply to this site with your contact information so I can speak to you. If this works for a few it makes me believe that we need to treat these folks completely different to the way society treats them today. This will change so much about what people really believe is happening to our minds.


 

C. Fitzgerald  |  06-06-2013

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 (https://aspe.hhs.gov/advisory-council-april-2013-meeting-handouts-napa-milestones-and-summit#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?


 

MAY 2013 COMMENTS

D. Morgan  |  05-10-2013

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.

ATTACHMENT:

ResearchersAgainstAlzheimer's -- a group of over 350 scientists dedicated to stopping Alzheimer's disease -- strongly supports the National Plan to Address Alzheimer's Disease and its bold but necessary goal 1 of preventing and effectively treating Alzheimer's disease by 2025. While this target will be a challenge -- similar to past national efforts to send a man to the moon and map the human genome, we firmly believe it is achievable if commensurate resources are committed and strategies deployed. To maximize our chances at success, we strongly support 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 Services, and we strongly encourage that such milestones be included in the next iteration of the national plan.

Including a specific set of time-bound milestones would be useful to all stakeholders, particularly those in medicine and science, striving to achieve the 2025 goal, as they will establish important interim markers to measure progress and determine potential amendments in the strategy. Absent such milestones, it would be far more difficult to track and measure progress against the goal.

As the Administration has clearly noted, the 2025 goal and the overall plan are national rather than federal goals meaning their success is dependent upon the active participation of multiple stakeholders including government, academia, industry, and non-governmental organizations. A tangible demonstration of this commitment is the level of resources dedicated to the task. While we recognize the fiscal challenges facing the nation as well as the reality that federal discretionary funding is determined in most cases on an annual basis, we think the milestones document would be further strengthened by including funding estimates, targets or ranges necessary to achieve the milestones. Such data would make for a more complete picture and help inform federal and non-federal funding decisions, including public-private partnerships. It would also help inform the annual Congressional budget and appropriations process by providing lawmakers with expert recommendations they can use in establishing department, agency, and program funding levels and in setting priorities.

In addition to including funding estimates, we offer the following thoughts as to ways the milestones chart could be strengthened further:

Research Milestones

  • Include throughout the document a stronger focus on basic research milestones, particularly benchmarks for discoveries of novel targets, to ensure the early-stage portion of the pipeline and process is not overlooked, as well as process reforms intended to reduce the time, the cost, and the risk of development therapies (More under regulatory), While we are hopeful that therapies and/or means of prevention will be available and accessible by 2025 if not sooner, achieving this goal does not negate the need for further research, particularly to develop more effective interventions and, hopefully one day, therapies to reverse the course of the disease and to cure it outright.
  • Include during the 2012-2015 timeframe a milestone focused on increasing the understanding as to potential differences treatments may have based on each individual patient's condition (e.g. Apolipoprotein E genotype, amyloid status etc).
  • Include during the 2016-2020 timeframe a milestone focused on the translation of promising therapeutic interventions into clinical testing.
  • Include throughout the research component the establishment of a government co-investment function that is modeled upon other successful programs in other sectors and that strives to bridge the "valley of death" that is so daunting in the Alzheimer's and neuroscience space. Such an entity would complement NIH and other research efforts by leveraging relatively small amounts of funding to advance targeted, goal-oriented, and milestone driven project.

Regulatory Milestones

  • As noted above, set specific regulatory goals aimed at compressing the time and cost of Alzheimer's therapy development. This effort should include specific action under all timeframes and set an overarching goal whereby the average development and review timeline for an Alzheimer's therapy would be reduced by a specific amount of time.
  • Include during the 2012-2015 timeframe the issuance of FDA guidance pertaining to clinical trials involving combination therapies, and modify the "FDA adaptive trial model" to "FDA adaptive trial paradigm."

Beyond these points, we recommend that the Department continually work to add greater levels of specificity to the milestones, particularly those pertaining to validated endpoints and approved treatments. Overall, this set of milestones must be seen as a constantly evolving, living, and breathing document and should be as comprehensive as the National Plan to Address Alzheimer's Disease. To that end, while the NIH and FDA are perhaps the two most important agencies in terms of achieving the 2025 goals, we recommend broadening this solid foundation so all key departments and agencies participating in the plan and Advisory Council, are incorporated.

We applaud you for your leadership in striving to stop Alzheimer's disease and thank you for considering this request. If you have any questions, please contact the Lead Representative of ResearchersAgainstAlzheimer's and CEO of the Byrd Alzheimer's Institute at the University of South Florida.


 

M. Ellenbogen  |  05-01-2013

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.


 

APRIL 2013 COMMENTS

J. Mishan  |  04-29-2013

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?

ANSWER:

Meeting videos are available online as soon as the HHS production office have them ready. They can be found with the other meeting materials at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings. A NAPA Listserv email is usually sent alerting subscribers they are available.


 

B. Lamb  |  04-26-2013

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. 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.


 

K. Rubinger  |  04-23-2012

United States Senate
Special Committee on Aging

Sen. Bill Nelson (D-FL), Chairman
Sen. Susan Collins (R-ME), Ranking Member
http://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. S. 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. B. 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 AGING
HEARING: The National Plan to Address Alzheimer's Disease: Are We On Track to 2025?
2:00 p.m. EDT, Wednesday, April 24, 2013
Dirksen Senate Office Building, Room 106

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


 

M. Perdue  |  04-14-2013

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!


 

L. La Bey  |  04-07-2013

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

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/


 

MARCH 2013 COMMENTS

I. Kremer  |  03-12-2013

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.

ATTACHMENT:

Leaders Engaged on Alzheimer's Disease (LEAD) commends you and the Advisory Council on Alzheimer's Research, Care and Services for the first National Plan to Address Alzheimer's Disease ("the Plan") and all the public and private sector stakeholders collaborating effectively to implement strategies crucial to transformative change for people with Alzheimer's disease and their families. LEAD is pleased that a number of priority recommendations previously submitted by the coalition are included in the first Plan and is optimistic that the revised Plan will be even stronger.

LEAD is a diverse and growing coalition of 56 member organizations including patient advocacy and voluntary health non-profits, philanthropies and foundations, trade and professional associations, academic research and clinical institutions, and biotechnology and pharmaceutical companies. Working collaboratively with LEAD member organizations and other stakeholders across the Alzheimer's-serving continuum, we offer the recommendations below for the revised National Plan to Address Alzheimer's Disease. Equally important, we are prepared to work with the Administration, Congress, and all other interested parties to achieve the shared goals articulated in the Plan.

LEAD's recommendations seek to strengthen the goals, strategies, and actions within the Plan. As noted in earlier comments, LEAD believes that some actions can be pursued at no or only low cost but that the topline goals can be achieved only with a significant increase in investment from the public, private, and nonprofit sectors. It is imperative that both Plan work and outcomes are LEAD Leaders Engaged on Alzheimer's Disease accomplished with the utmost public transparency and that there is an effective methodology for assessing the impact that strategies within the Plan have on progress toward the timely achievement of stated goals. To that end, LEAD recommends that immediate action be taken to develop a model in 2013 that will allow HHS to assess the impact of the action steps in the Plan and identify areas for course adjustments. We, as a nation, should pursue only implementation steps that clearly are moving toward our goals. In that regard we recommend that each goal and strategy set forth in the final Plan include a budget, clear milestones and quantifiable metrics to achieving the desired outcome.

Should you have questions or require additional information about this document, please contact LEAD's executive director. We look forward to working with you on this important effort.

In developing these comments LEAD relied upon three workgroups -- one each in the areas of research and drug development, clinical care, and long-term care support and services -- representative of the sentiment and unique needs of the entire Alzheimer's-serving community. Participation in LEAD or in the development of these comments does not constitute an endorsement of each of the recommendations within this document by any particular organization.

Summary of Recommendations

Over-arching Plan Recommendations

  • New Recommendation 1: Adopt all 2013 recommendations from the Advisory Council
  • New Recommendation 2: Until such time as the statute may expand the number of seats on the Advisory Council, invite a person with Alzheimer's disease or a related disorder to participate on each Advisory Council subcommittee as on outside expert
  • New Recommendation 3: Create a formal mechanism for additional federal government agencies to participate in the Advisory Council process
  • New Recommendation 4: Encourage participation in the Plan process by experts on non-dementing disorders that have a high rate of co-morbidity with Alzheimer's disease or a related disorder
  • New Recommendation 5: Identify and define a role for individuals and family members/family caregivers in each major section of the Plan
  • New Recommendation 6: Incorporate throughout the Plan clear and transformative time-based metrics with projected necessary funding levels
  • New Recommendation 7: Commission an independent analysis of the investment value of Alzheimer's disease spending by the federal government

Goal 1: Prevent and Effectively Treat Alzheimer's Disease by 2025

  • Action 1.A.1: Convene an Alzheimer's disease research summit with national and international scientists to identify priorities, milestones, and a timeline
    • LEAD recommends that each summit provide explicit strategies and milestones to be met within defined timeframes.
    • LEAD recommends that each summit have a specific session to report milestones and the progress of strategies set at previous summits.
  • Action 1.B.3: Increase enrollment in clinical trials and other clinical research through community, national, and international outreach
    • LEAD recommends that by the end of 2013 HHS begin implementing the action plan produced by its intended convening of representatives from across the federal government, state and local governments, academic medical research institutions, and the private sector to create an action plan for increasing enrollment in clinical trials, including through the building of registries.
  • Action 1.B.5: Conduct clinical trials on the most promising pharmacologic interventions
    • LEAD recommends that strategies should build on existing industry infrastructure including combination therapies.
    • LEAD recommends that this Action should be expanded to include non-pharmacological interventions.
    • LEAD recommends that each strategy state needed resources and projected reductions in cost and time for the clinical trial process.
  • Action 1.C.1: Identify imaging and biomarkers to monitor disease progression
    • LEAD recommends development of a large-scale, open-source patient registry of subjects that can be approached for recruitment in prevention trials, including specifically under-represented ethnic and other sub- populations.
  • Action 1.C.2: Maximize collaboration among federal agencies and with the private sector
    • LEAD recommends that HHS and the White House Office of Science and Technology Policy (OSTP) collaboratively coordinate alignment of government, industry and academic sponsored studies to achieve consensus on defined recommendations for advancing new drug candidates.
  • Action 1.E.1: Pursue ways to compress the time between target identification and release of pharmacological treatments
    • LEAD recommends that this Action include expanded public and private support for a uniform patient consent and the National Institutional Review Board for Neurodegenerative Diseases (NIRBND) being developed by the National Biomedical Research Ethics Council (NBREC).
  • Action 1.E.2: Leverage public and private collaborations to facilitate dissemination, translation, and implementation of research findings
    • LEAD recommends that ASPE lead an effort to coordinating the exponential growth in public-private partnerships (PPPs) to avoid duplication of effort.
  • New Recommendation 1: Address the unique circumstances of individuals with Alzheimer's disease and their ability to provide informed consent for clinical trial participation
  • New Recommendation 2: Implement Alzheimer's disease specific data standards to ensure a uniform approach for collection, transfer, analysis, reporting and archiving of data

Goal 2: Enhance Care Quality and Efficiency

  • Action 2.A.2: Encourage providers to pursue careers in geriatric specialties
    • LEAD recommends that the Health Resources and Services Administration (HRSA) support training projects that provide fellowships for individuals studying to be geriatric social workers.
  • Action 2.A.6: Support state and local Alzheimer's strategies
    • LEAD recommends that HHS and the Department of Labor collaboratively develop best practices for direct-care workforce development, recruitment, and retention tailored to each provider setting in the care continuum including: home health, adult day, assisted living, skilled nursing, and hospice.
  • New Recommendation 1: Address inconsistencies across geographic areas and subspecialties, and from provider to provider
  • New Recommendation 2: Update reimbursement formulas to encourage brain health risk management, early diagnosis of memory disorders, persistent and multi-disciplinary treatment, and uniform levels of treatment across care settings
  • New Recommendation 3: Address inadequate emergency and acute hospital care for people with memory disorders, especially those with dementia
  • New Recommendation 4: Establish a network of geographically dispersed and accessible memory disorders centers, linked to sites providing integrated research and patient care, to facilitate translational medicine, and to continuously develop and improve the standard of care

Goal 3: Expand Supports for People with Alzheimer's Disease and Their Families

  • Action 3.A: Ensure Receipt of Culturally Sensitive Education, Training, and Support Materials
    • LEAD recommends that stigma be identified as a specific criteria when implementing Actions 3.A.1, 3.A.2, and 2.A.3.
  • Action 3.B.3: Review the state of the art of evidence-based interventions that can be delivered by community-based organizations
    • LEAD recommends that the Plan action for HHS to "partner with private organizations to convene a meeting of leading scientists and practitioners to review the state of the art of research and translational activities related to evidence-based interventions that can be delivered by community-based organizations" be annualized.
  • Action 3.D.1: Educate legal professionals about working with people with Alzheimer's disease
    • LEAD recommends that this Action be expanded to include education for court personnel, financial planners, and first responders.
  • New Recommendation 1: Require training for health and social service professionals caring for people with Alzheimer's disease and related disorders
  • Recommendation 2: Develop best practices to help family caregivers remain productive in the workplace
  • Recommendation 3: Assess the impact on and develop best practices for supporting children who are family caregivers

Over-arching Plan Recommendations

New Recommendation 1: Adopt all 2013 recommendations from the Advisory Council

LEAD recommends that the Plan incorporate all the recommendations adopted by the Advisory Council at its January 2013 meeting.

New Recommendation 2: Until such time as the statute may expand the number of seats on the Advisory Council, invite a person with Alzheimer's disease or a related disorder to participate on each Advisory Council subcommittee as on outside expert

LEAD recommends that a mechanism be developed to have at least one person diagnosed with Alzheimer's disease and one person diagnosed with a non- Alzheimer's dementing disorder begin actively participating in Advisory Council work no later than the summer of 2013. The public comment process is not an adequate substitute for comprehensive participation. The Advisory Council members and all federal officials involved in developing and implementing the Plan have stated unambiguously and with great integrity that the Plan addresses not only Alzheimer's disease but all dementing disorders; among the most important ways to give life to that commitment is to invite voices from a diverse range of dementing disorders.

New Recommendation 3: Create a formal mechanism for additional federal government agencies to participate in the Advisory Council process

Rightly, HHS is leading the federal effort to develop and implement the Plan; HHS has encouraged and welcomed participation by other federal agencies. LEAD recommends that such participation be more formal, consistent, and robust. While expansion of statutory membership on the Advisory Council is one option worth consideration, LEAD believes that amending the statute is not a necessary prerequisite to convincing other federal agencies to participate voluntarily. At a minimum, the Departments of Homeland Security, Justice, Commerce, Labor, Housing and Urban Development, Transportation, and Education, along with the Office of Personnel Management (OPM) and the Office of Management and Budget (OMB) should participate in developing and implementing the Plan alongside colleagues from HHS and the Department of Veterans Affairs who already are engaged. Consider some representative examples: Labor and Education are critical to addressing health care workforce challenges; Hurricane Katrina and super storm Sandy painfully demonstrated the need for the Federal Emergency Management Agency (FEMA) to develop preparedness strategies for when natural disasters separate people with dementia from their care providers and settings; Alzheimer's disease science rapidly has become a critical issue in global economic competitiveness requiring attention by Commerce; both the Commerce Department and the State Department likely could contribute to HHS efforts to expand collaboration with foreign governments in coordinating existing national plans and potentially developing a global Plan; OPM and OMB need to be at the table to assess the impact on both the federal workforce and the federal budget.

New Recommendation 4: Encourage participation in the Plan process by experts on non-dementing disorders that have a high rate of co-morbidity with Alzheimer's disease or a related disorder

The Plan already encourages public-private partnerships (PPPs) and breaking down any tendencies to work in silos. LEAD recommends that the Advisory Council and HHS strongly encourage both formal and informal participation in the process of developing and implementing the Plan by public and private sector stakeholders with expertise in other disorders which have a high rate of comorbidity with Alzheimer's disease or related disorders. For example, many people have both Alzheimer's disease and diabetes; while it is not yet clear with there is only a high correlation or a causal relationship, it is clear that it is much more financially costly and physically injurious to have both conditions together than either condition alone. The National Institute on Aging certainly could establish dialogue with other relevant NIH institutes focused on co-morbid conditions while Alzheimer's disease patient advocacy organizations on the Advisory Council could establish similar dialogue with patient advocacy organizations focused on co-morbid conditions to advance implementation of the Plan and develop recommendations for future revisions. Working collaboratively in the public and private sectors should make more effective efforts to reduce or better manage co-morbid conditions and, potentially, accelerate pursuit of scientific interventions to reduce the incidence of such conditions.

New Recommendation 5: Identify and define a role for individuals and family members/family caregivers in each major section of the Plan

Individuals and family members/family caregivers are capable of contributing to memory loss detection, increasing participation in clinical trials, improving clinical care, reducing stigma, and raising public awareness. LEAD recommends that the Plan clearly identify and define ways in which individuals and family members (or their identified family caregivers) can support effective implementation of each major action or strategy within the Plan.

New Recommendation 6: Incorporate throughout the Plan clear and transformative time-based metrics with projected necessary funding levels

It is abundantly clear to LEAD and others across the Alzheimer's-serving community how remarkable the work is that the Advisory Council and federal officials have done in a very compressed time frame. The depth and variety of recommendations and actions developed thus far have been impressive. Policy experts likely are able to unpack how these elements translate to changing real people's real problems. The Plan as a whole needs language that can be much more readily identified by the general public, language that will make clear how the Plan will change their lives. This is particularly needed in the Plan's clinical care and long terms supports goals. In the research goal, the Plan has that language in the form of the 2025 goal. But the complexity of the language and the sort of inside Washington nature of what is proposed in the Advisory Council recommendations and what is already embedded in the Plan's clinical care and long term supports sections, is impenetrable for average citizens who need the Plan to work but who also need to be inspired by the Plan and have their hope sustained or restored by the Plan. There should be aspirational goals across the Plan that are tangible, transformative, and clear. Take the model of the 2025 goal and frame parallel goals in the clinical care and long term supports portions of the Plan. Much of what already exists in those sections of the Plan already point in the direction of what would be aspirational goals but those aspirational goals have not been articulated. The Plan proposes to fix the systems but does not articulate why the systems need to be fixed or what would be achieved as a result of fixing the systems.

LEAD recommends that the Plan adopt time-based goals -- that the Centers for Disease Control (CDC) and other public and private sector agencies could collaborate to implement -- for:

  • increasing the percentage of people with Alzheimer's disease or a related disorder who are diagnosed and the diagnosis properly charted in the medical record, informed of the diagnosis, and referred by the diagnosing medical practice to community resources;
  • decreasing the incidence of wandering and the rate of injury or death;
  • decreasing the incidence of family caregiver depression;
  • decreasing the incidence of falls by people with Alzheimer's disease or a related disorder in home and community based settings as well as in residential care facilities; and
  • increasing the utilization of hospice and other palliative care services.

LEAD recognizes that most or all of the goals, strategies and action items within the Plan entail significant federal investments designed to reduce over time costs to the public and private health care systems, the economy, and the toll of human suffering. LEAD recommends that the Plan articulate the federal investments needed to achieve the established goals and value of the budgetary, economic and social benefits that are to be accomplished.

New Recommendation 7: Commission an independent analysis of the investment value of Alzheimer's disease spending by the federal government

Members of Congress, the Administration and tens of millions of Americans recognize the strategic irrationality and inhumanity of the enormous federal expenditures on care for people with Alzheimer's compared to the relatively miniscule federal investment on research to prevent, treat or cure this devastating disease. But that imbalance persists and worsens year after year in part because the federal government scores federal research spending as a cost rather than an investment. The scoring system therefore ignores not only the future cost-savings to social safety net programs but also the future revenue gains that would accrue from development of new products with a vast global market, increases in workplace productivity, and an expanded workforce. LEAD recommends that the Plan call for an independent body to assess the investment value of the federal government's Alzheimer's disease research funding and provide policy options to correct the current imbalance between federal funding for research and care.

Goal 1: Prevent and Effectively Treat Alzheimer's Disease by 2025

LEAD supports this bold goal, with the hope that it will be achieved more rapidly with the right plan and resource commitment. LEAD is pleased that the Advisory Council has included a number of recommendations submitted by the coalition under Goal 1, including the recommendation for a strategic approach to focus efforts and resources on "the most promising pharmacological interventions" as well as accelerating efforts to "identify early and presymptomatic stages of Alzheimer's disease." LEAD applauds the increasing emphasis on international coordination and collaboration with commercial and nonprofit partners. However, it is imperative that any goal to prevent and effectively treat Alzheimer's disease must include research investments in non-pharmacological treatments. Nonpharmacological approaches can improve relevant outcomes including improved behavior and delay of institutionalization.

Below please find LEAD's recommendations for Goal 1 of the Plan:

Action 1.A.1: Convene an Alzheimer's disease research summit with national and international scientists to identify priorities, milestones, and a timeline

LEAD applauds NIH/NIA for convening the first Research Summit in May of 2012 and for its plans to reconvene every other year around specific research topics of high priority to the field. LEAD recommends that each summit provide explicit strategies and milestones to be met within defined timeframes. Furthermore, LEAD recommends that each summit have a specific session to report milestones and the progress of strategies set at previous summits.

Action 1.B.3: Increase enrollment in clinical trials and other clinical research through community, national, and international outreach

LEAD recommends that HHS carryout and begin implementing by the end of 2013 the action plan produced by its intended convening of representatives from across the federal government, state and local governments, academic medical research institutions, and the private sector to create an action plan for increasing enrollment in clinical trials, including through the building of registries.

Action 1.B.5: Conduct clinical trials on the most promising pharmacologic interventions

Strategies to expand research aimed at preventing and treating Alzheimer's disease should reference industry's contribution in conducting clinical trials. Strategies should build on the infrastructure that exists in industry for discovering promising new therapeutic targets and therapies--including combination therapies--for trials and their existing working relationships with regulators to ensure that safe and effective treatments get approved. The NIH/NIA 2012 Alzheimer's disease Summit included debate on examining the current conceptual models in studying the disease as well as providing a portion of federal funding for cutting-edge proposals. Non-pharmacologic interventions should also be explored, including community-based interventions and technologies that allow people with dementia to function independently for as long as possible. Strategies should include a statement of what each federal and industry partner can contribute and where the cost and time of the clinical trial process can be reduced consistent with standards of safety and efficacy.

Action 1.C.1: Identify imaging and biomarkers to monitor disease progression

To further support a strategy to identify early and presymptomatic stages of Alzheimer's disease, government, industry, and patient advocacy organizations should work together to develop a large-scale, open-source patient registry of subjects that can be approached for recruitment in prevention trials, including specifically under-represented ethnic and other sub-populations. Consider a broader healthy aging registry, similar to the Framingham study for cardiovascular disease, to follow asymptomatic individuals and those with correlated diseases such as diabetes (the new European Medical Information Framework -- Innovative Medicines Initiative consortium has a similar aim). Trials focused on identifying early stages of Alzheimer's disease should be based on development of quantitative clinical trial models designed for studies in early Alzheimer's disease.

Action 1.C.2: Maximize collaboration among federal agencies and with the private sector

With the levels of funding now dedicated by government, academia, and industry to Alzheimer's disease research, it is important to make the most efficient use possible of all partners and resources -- and make the best use of the limited number of patients available for clinical trials. There is a need to align government, industry and academic sponsored studies to achieve consensus on defined recommendations for advancing new drug candidates for the treatment of Alzheimer's disease. A precedent exists in other disease areas (e.g. STAIR recommendations for stroke). Current public-private partnerships in the Alzheimer's disease arena have not yet owned this opportunity to date. Funding would catalyze such progress. Research should be a community-wide effort for public private collaboration and HHS should consider asking the White House Office of Science and Technology Policy (OSTP) to help coordinate this effort with them.

Action 1.E.1: Pursue ways to compress the time between target identification and release of pharmacological treatments

There are many important -- albeit underfunded -- strategies being pursued to speed treatments to patients such as disease modeling, drug repurposing, better target identification, and strategies for combination therapy. However, a major issues remains with respect to the lack of a centralized Institutional Review Board (IRB). LEAD recommends that this Action include expanded public and private support for a uniform patient consent and centralized IRB to review all multi-center Alzheimer's disease trials to decrease the time for trial start-up and protocol amendments.

The National Biomedical Research Ethics Council (NBREC) has been incorporated as a "neutral" home to develop a National IRB for Neurodegenerative Diseases (NIRB-ND). The NIRB-ND will closely follow the Central IRB model pioneered successfully by the National Cancer Institute, and it will be managed by a Steering Committee composed of representatives from the sponsoring organizations/foundations.

Given the proposed changes to the "Common Rule" on the topic of centralized IRBs (cIRBs) and the National Institutes of Health's growing interest in cIRBs, this effort will provide an innovative solution to a problem shared by many constituencies interested in therapy development. The NBREC approach features the establishment of a successful public-private partnership business model. The NIRB-ND will guarantee the protection of study volunteers, reduce needless delays in large clinical trials, decrease costs and reduce risks associated with studies. The project is exploring options for expanding reviews to include Canada and eventually countries within the European Union.

Action 1.E.2: Leverage public and private collaborations to facilitate dissemination, translation, and implementation of research findings

There is an exponential growth in the number of public and private partnerships (PPPs) in the Alzheimer's disease arena, which is simultaneous with a concern of consortia fatigue. The sense of urgency exists to address improved understanding of the scope of activities (in scope and out of scope) for the numerous PPPs, and specifically how alignment is taking place to avoid duplication of effort. Positive examples exist of synergistic alliances between ACT-AD, C-Path and CAMD, ADNIPPSB/Alzheimer's Association, and the Global CEO Initiative on Alzheimer's Disease. Defining specified resources aimed at facilitating coordinating PPPs is an unmet and urgent need. Leadership from ASPE is crucial and should be made a priority.

New Recommendation 1: Address the unique circumstances of individuals with Alzheimer's disease and their ability to provide informed consent for clinical trial participation

LEAD recommends that the Plan include a process for developing standardized informed consent to allow participants in clinical trials to authorize their deidentified data be used for research purposes broader than a single study in order to advance understanding, treatment and prevention of Alzheimer's disease. LEAD recommends pooling of individual de-identified data into larger Alzheimer's disease databases -- globally available to qualified researchers -- to allow data mining and to increase statistical significance, provide information on the natural history of Alzheimer's disease, identify promising biomarkers and response or non-response to treatment. This database would need to address privacy, HIPPA, informed consent and liability issues and need a mechanism to protect proprietary and confidential data. Research activities involving human participants will continue to be conducted in a way that promotes their rights and welfare but include a feature for allowing Alzheimer's patients to opt in and contribute their de-identified data for research as in public databases or opt out for those who do not want to allow their data to be used for research purposes.

New Recommendation 2: Implement Alzheimer's disease specific data standards to ensure a uniform approach for collection, transfer, analysis, reporting and archiving of data

The Plan should encourage all new and ongoing federally funded and industrysponsored Alzheimer's disease clinical trials to use the same Alzheimer's disease specific data standards developed by the Clinical Data Interchange Standards Consortium (CDISC). Data standards provide a uniform approach for collection, transfer, analysis, reporting and archiving of data. The benefits of using common data standards include improved learning and knowledge generation and a reduction in time, resources and costs. Using these standards will facilitate data sharing and review by the FDA and EMA. Alzheimer's disease clinical trials data, including data in failed trials, data with respect to dormant drugs, and data rich in biomarker information, should be remapped to the same common Alzheimer's disease CDISC data standards and any federally funded and industry sponsored Alzheimer's disease clinical trials data recorded should be shared in a common Alzheimer's disease database for qualified research use. Given the FDA's preference and future requirement for submission of clinical data in CDISC unified clinical data standards, it is recommended that data be collected for current and future clinical trials in CDISC format using the AD CDISC therapeutic area specific standards. Lack of action on this recommendation will slow the time for regulatory drug review of any new therapeutic candidate.

Goal 2: Enhance Care Quality and Efficiency

LEAD is pleased that the Plan includes the goal to enhance care quality and efficiency. The Plan for Alzheimer's disease should focus on developing and continuously improving the care of our citizens in home or community settings by offering the best risk management, prevention strategies, early detection, precise diagnosis, and long-term management available. The strategies outlined for Goal 2 provide a platform for ensuring that all Americans requiring care for Alzheimer's disease are able to access quality care across various care settings.

As the Plan has evolved from the Alzheimer's Disease Study Group (ASG), to the Advisory Council and the first Plan, we have not adequately motivated the Plan with a clear vision of what clinical care should look like in the United States. The comprehensive effort to date has been laudable and has advanced the country's goals with respect to research. But research advances will not have the impact that they should unless we begin with an equally broad and forwardlooking conceptualization of clinical care.

ASG recommendations related to clinical care in 2009 were limited to a focus on measurements of quality, making paid caregiving available, and educating the public about the disease. There was an implicit assumption that medical care is already uniform, executed consistently and well in diverse settings, and that it encompasses the public need. In 2011, LEAD recommended that the Plan include development of a workforce to diagnose and care for people with memory disorders; improve models for reimbursement that incentivize practitioners to diagnose early and treat persistently; support pilot and demonstration projects to improve the care that is available; develop innovative new models for care; improvement of emergency care for people with dementia; and establishment of a network of geographically accessible memory disorders centers to serve as translational sites to advance the medicine around prevention, diagnosis, and treatment of AD and related conditions. The first Plan was very strong on collaborations among agencies, advancement of neuroimaging and biological markers to aid in early diagnosis and drug development, educating the workforce and disseminating existing guidelines (albeit limited and out of date), as well as educating the public. It also mentioned the need to strengthen direct care, without describing the deficiencies; the need to survey unmet needs; to develop cost-effective models of care; to improve minority care; to protect the vulnerable; and to assess the housing needs of people with dementia. These listings may be perceived as somewhat piecemeal and secondary by people at risk for and living with memory disorders, their families, and healthcare workers.

Clinical care should encompass detection of risk factors, management of risk factors, early diagnosis and lifelong management, regardless of social differences, medical co-morbidities, and physical location. Citizens should be able to count on comparable approaches regardless of where they live or how they fund their healthcare. New advances in research related to risk, diagnosis, and treatment should translate easily into clinical settings, so that willing patients can help to prove or disprove their utility. And clinicians who choose to promote brain health and provide care to people with memory disorders across the stages of their lives should be able to do so without bankrupting their practices. Without some effort to develop a national, clinical focus on specialized prevention and care approaches, there will be no true expertise--and the greatest advances to date are at risk of being irrelevant because there is no coherent approach to ensuring that they shape practices in a timely manner.

Below please find LEAD's recommendations for Goal 2 of the Plan:

Action 2.A.2: Encourage providers to pursue careers in geriatric specialties

The Plan recognizes both the worsening shortage in the geriatric specialty workforce and the dire consequences that the shortage causes for the growing population of people with Alzheimer's disease and related disorders. LEAD recommends that the Health Resources and Services Administration (HRSA) support training projects that provide fellowships for individuals studying to be geriatric social workers.

Action 2.A.6: Support state and local Alzheimer's strategies

The Plan recognizes that many states and local communities have developed dementia strategies and action plans. The Advisory Council repeatedly has discussed opportunities for the national Plan and these state or local plans to share and reinforce best practices. LEAD recommends that HHS and the Department of Labor collaboratively develop best practices for direct-care workforce development, recruitment, and retention tailored to each provider setting in the Alzheimer's disease care continuum including: home health, adult day, assisted living, skilled nursing, and hospice.

New Recommendation 1: Address inconsistencies across geographic areas and subspecialties, and from provider to provider

Clinical approaches to risk management, diagnosis, and treatment are inconsistent across geographical areas and subspecialties, and also vary from care provider to care provider. Existing education of physicians regarding dementia and related disorders is also quite limited, despite the fact that the Medicare Trust Fund spends over $9 billion annually to subsidize Graduate Medical Education. LEAD recommends that the Plan call for conducting a nationwide assessment of available expertise by region of the country including expert clinicians in all relevant specialties (family practice, general internal medicine, geriatrics, neurology, psychology, psychiatry, and social work), paid caregivers, day centers, overnight respite care, and long term care options. This should include examination of current practices for risk factor management, diagnosis, longitudinal outpatient management, emergency management, and long term residential care in each area. Additionally, all residency programs should be assessed for the amount of education and training focused on dementia and related disorders.

New Recommendation 2: Update reimbursement formulas to encourage brain health risk management, early diagnosis of memory disorders, persistent and multi-disciplinary treatment, and uniform levels of treatment across care settings

The current reimbursement system discourages brain health related risk management, early diagnosis of memory disorders, persistent treatment, multidisciplinary treatment, and uniform levels of treatment regardless of care setting. LEAD recommends that the Plan call for an analysis (to be completed by the end of 2013) of the actual costs and reimbursements for laboratory services and patient visits for risk factor management, diagnosis, and longitudinal outpatient management, and for diagnosis and management within long term care settings. The analysis should benchmark successful programs and practices. LEAD also recommends that the Plan call for HHS to propose (by the summer of 2014) options to correct the reimbursement formulas as needed to optimize these efforts; funding for demonstration projects for models of care across the spectrum of disease; and funding for demonstration projects to assess the impact of dementia specific medical homes. For example, reimbursement levels might be tied to whether nationally certified dementia specific services were provided.

New Recommendation 3: Address inadequate emergency and acute hospital care for people with memory disorders, especially those with dementia

Inadequate emergency and acute hospital care imposes staggering costs on the physical and emotional well being of patients, families, and medical personnel. The economic costs to patients, providers, public and private insurers are unsustainable. The horror stories are well known, more typical than anecdotal, and all too true. LEAD recommends that the Plan call for HHS to complete (by the end of 2013) a nationwide assessment of the available inpatient and outpatient emergency care for dementia patients with acute agitation or psychosis and the quality of inpatient care for people with memory disorders hospitalized for non-dementia related conditions. LEAD further recommends that the Plan call for HHS to propose (by the summer of 2014) methods to incentivize hospitals and psychiatrists to handle dementia related emergencies and standards for emergency care for people with dementia. For example, HHS could consider proposing standards for geriatric psychiatry units, which currently are not required to have a psychiatrist or even a geriatrician.

New Recommendation 4: Establish a network of geographically dispersed and accessible memory disorders centers, linked to sites providing integrated research and patient care, to facilitate translational medicine, and to continuously develop and improve the standard of care

Access to quality care -- and the application of medical practice to transformative research -- all too frequently is compromised by geographical happenstance. LEAD recommends that the Plan call for provision of supplemental funding to the centers for infrastructure and reporting, and ensure adequate reimbursement within the centers to support clinical infrastructure. Additionally, LEAD recommends that the Plan establish a target date of 2017 for HHS to develop a comprehensive national public health strategy for Alzheimer's disease and related disorders which includes for all Americans regardless of age or care setting early assessment of risk factors, advice about risk mitigation, access to diagnosis and disease management.

Goal 3: Expand Supports for People with Alzheimer's Disease and Their Families

LEAD applauds the Plan for including goals and strategies that will improve quality care and expand support for people with Alzheimer's disease and other dementias and their families. Specifically, we are pleased that the Plan includes recommendations from LEAD to expand proven programs that are in place at the federal, state and local levels that provide adequate care and support for people with Alzheimer's and other dementias and their families. Moving forward it is important that the Plan provide adequate resources to be available to support the implementation of these strategies.

Below please find LEAD's recommendations for Goal 3 of the Plan:

Action 3.A: Ensure Receipt of Culturally Sensitive Education, Training, and Support Materials

Stigma has diverse cultural bases and forms of expression. Reducing stigma and its consequences requires culturally appropriate interventions. LEAD recommends that stigma be identified as a specific criteria when implementing Actions 3.A.1, 3.A.2, and 2.A.3.

Action 3.B.3: Review the state of the art of evidence-based interventions that can be delivered by community-based organizations

The Plan calls for HHS to "partner with private organizations to convene a meeting of leading scientists and practitioners to review the state of the art of research and translational activities related to evidence-based interventions that can be delivered by community-based organizations." LEAD recommends that the Plan now call for such a meeting to be an annual occurrence.

Action 3.D.1: Educate legal professionals about working with people with Alzheimer's disease

LEAD supports this Plan action and recommends that it be expanded to include education for court personnel, financial planners, and first responders. A number of states and local communities have extensive and evidence-based experience partnering with private organizations such as the Alzheimer's Association in educating first responders and court personnel (some have worked with financial planners) to better meet the needs of people with Alzheimer's disease and related disorders and of family caregivers. At a minimum, HHS and the Department of Justice could serve as a clearinghouse for best practices in educating legal, financial, and emergency services professionals.

New Recommendation 1: Require training for health and social service professionals caring for people with Alzheimer's disease and related disorders

LEAD recommends that the Plan call for development of training standards, for health and social service professionals caring for people with Alzheimer's disease and related disorders, by government and private agencies that regulate, accredit, license and certify residential care and community care. Such providers should include directors of nursing, nurse supervisors, nursing assistants and respite caregivers. The settings requiring certification should include home care, adult day care, assisted living, and nursing home. The training should be based on evidence-based guidelines that have been developed through a consensus processes among providers, family caregivers, other advocates, and people with dementia.

Recommendation 2: Develop best practices to help family caregivers remain productive in the workplace

Many family caregivers want or need to remain in the workforce but face substantial challenges that could be addressed successfully with workplace policies designed for elder care and based on the accommodations begun more than a generation ago for working parents. LEAD recommends that the Plan call for development of best practices to help family caregivers remain productive in the workplace. Best practices may include flextime; work-at-home options; jobsharing; counseling; dependent care accounts; information and referral to community services; and employer-paid services of a care manager.

Recommendation 3: Assess the impact on and develop best practices for supporting children who are family caregivers

At the local, state, and federal levels, enormous investments are committed to advancing the academic and personal success of children. Increasingly, there is widespread -- perhaps universal -- realization that the efficacy of such investments can be enhanced or diminished by students' home environment. LEAD recommends that the Plan call for HHS and the Department of Education to collaboratively examine the consequences of Alzheimer's disease family caregiving on the academic achievement, and social-emotional well being of children and develop best practices for schools to support the needs of these students.


 

E. Sokol  |  03-08-2013

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?

ATTACHMENT:

Time to Build: Action Steps and Recommendations to Update the "National Plan to Address Alzheimer's Disease" [Available as a separate link: https://aspe.hhs.gov/pdf-document/napa-public-comment-attachment-time-build]


 

J. Roth  |  03-07-2013

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.


 

K. Rowlett  |  03-05-2013

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.


 

S. Greb  |  03-05-2013

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.


 

A. Hunt  |  03-05-2013

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


 

K. Duff  |  03-05-2013

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.


 

J. Wisboro  |  03-05-2013

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,


 

M. Manion  |  03-05-2013

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.


 

H. McCall-Kelly  |  03-05-2013

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.


 

A. Buffer  |  03-05-2013

"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?????


 

C. Maarouf  |  03-05-2013

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.


 

G. Clouston  |  03-05-2013

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.


 

E. Martinez  |  03-05-2012

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.


 

M. Spallas  |  03-05-2013

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.


 

P. Sullivan  |  03-05-2013

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.


 

FEBRUARY 2013 COMMENTS

W. Naus  |  02-13-2013

As 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.

==========

From: N. Hooyman

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 W. Naus will also be sending you a letter from 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.

ATTACHMENT:

Public Comment on the National Plan to Address Alzheimer's Disease

On behalf of the Council on Social Work Education (CSWE), I am pleased to provide this written comment to the Department of Health and Human Services (HHS) as it works on the next iteration of the National Plan to Address Alzheimer's Disease.

First, allow me to thank you for your willingness to engage with CSWE over the last several months to hear about the issues and concerns of the social work education community with respect to tackling the challenges of Alzheimer's disease. We appreciate the opportunity to provide our community's perspective into this important dialogue and are hopeful that social work will continue to be recognized as a contributing participant in care for patients and families affected by Alzheimer's disease and that social work will be explicitly named alongside its partner professions in the next National Plan.

As discussed in our previous written comment to HHS and the Advisory Council on Alzheimer's Research, Care, and Services, CSWE remains primarily concerned about the preparation of the workforce to meet the needs of the Alzheimer's disease patient and caregiver community. The goal of producing a workforce that incorporates all necessary players--including social workers--equipped with the needed skills cannot be achieved without enhanced investment in recruitment, training, and retention of students in the health professions who will be working with older adults. Simply put, we will not have the capacity to meet the already overwhelming demand for services and supports if we do not invest today in the current and future workforce.

Therefore, CSWE wholeheartedly endorses Recommendation 7 of the Council's Clinical Care Subcommittee, made in January 2013, to: "Expand funding and incentives to encourage individuals to pursue careers in geriatric specialties," through interprofessional education and training activities, existing funding mechanisms, such as the Title VII and Title VIII programs at the Health Resources and Services Administration (HRSA), and through the creation of new loan repayment programs. While it is critically important to ensure that the current workforce receive the training it needs to provide adequate services, investment in the workforce pipeline is what will truly move the dial for Alzheimer's disease patients and caregivers. The current and projected workforce shortages across the health professions have been well-documented. With respect to social work, only an average of 5 percent of all social work graduates completed a specialization in aging in 2009-2010 (CSWE, 2011).1 We, the social work education community and the federal government, must get serious and creative about incentivizing more social workers to enter careers in geriatrics. The Advisory Council made this recommendation to HHS in May 2012 as well, and CSWE urges HHS to incorporate such a goal in the next National Plan.

Second, as an educational organization representing 2,500 individual members and nearly 700 graduate and undergraduate programs of professional social work education, as well as the national accreditor for social work education programs in the U.S., CSWE works with programs on the development and dissemination of curriculum covering a variety of practice areas, including geriatrics. We are appreciative of efforts by HHS to include CSWE in discussions about curricular needs for health professions involved in Alzheimer's disease care and hope to continue to engage with HRSA and other parts of the Department to this end to discuss the development and dissemination of educational materials.

However, it is important to clarify a few limitations with respect to Recommendation 4 by the Clinical Care Subcommittee and Recommendation 4 by the Long-Term Services and Supports Subcommittee dealing with the development of required dementia-specific curriculum for practitioners. The social work accreditation standards have been designed to ensure that all social work students achieve specified skills and knowledge or competencies but do not specify content to attain these competencies. At the baccalaureate level, programs are instructed to provide a generalist curriculum to ensure that graduates are prepared to function at the beginning professional level in the variety of settings in which BSW graduates are employed, which includes services to people across the lifespan and across different delivery systems. At the master's level, programs are instructed to build on these competencies and apply them in areas of specialization appropriate to their mission and responsive to their region. Currently, there are 52 master's programs offering a certificate in aging/gerontology and 57 master's programs offering a concentration; we would fully expect that these programs either already include dementia-specific curricula or would welcome the assistance in infusing this content into the curriculum. CSWE is committed to facilitating this process of ensuring that social work graduates are prepared to work with persons with dementia and their families.

Through initiatives such as CSWE's National Center for Gerontological Social Work Education, supported by the John A. Hartford Foundation, we are able to develop and disseminate curricular resources to our programs for their use. Though not mandatory curriculum, these resources can help shape program content and infuse the most up-to-date research and thinking on a given topic.

Therefore, with respect to the Clinical Care Subcommittee's Recommendation 4:

"Develop a unified curriculum for primary care practitioners to become more knowledgeable about Alzheimer's disease and enhance the skills necessary to deliver dementia capable care."

and the Long-Term Services and Supports Subcommittee's Recommendation 4:

"State education and health agencies and others should include key information about [Alzheimer's disease] in all curricula for any profession or career track affecting [long-term services and supports]."

while CSWE supports the development of dementia-specific curricular resources that ensure practitioners (including social workers) across the health care team are equipped with a common sense of understanding and necessary skills, and would disseminate such resources to our programs for their consideration, CSWE would not be able to mandate the use of a unified curriculum to our programs. I would be happy to provide additional information or clarification on the accreditation process of professional organizations like CSWE if it would be helpful to you.

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

  1. Council on Social Work Education (CSWE). (2011). 2009 Statistics on social work education in the United States. Retrieved from http://www.cswe.org/CentersInitiatives/DataStatistics/ProgramData/47673.aspx

 

JANUARY 2013 COMMENTS

C. Schelhorn  |  01-17-2013

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.

ANSWER

Information on future meetings is available at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services#NextMtg.


 

D. Walberg  |  01-14-2013

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


 

L. Bowley  |  01-13-2013

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.


 

M. Ellenbogen  |  01-13-2013

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 afterwards.

ATTACHMENT:

First of all, I would like to thank the Alzheimer Association, for making it possible for me to be here today, and reach another milestone.

As many of you know, I started reaching out to this Advisory Council when it first formed.

H. Lamont, was kind enough to read my emails and comments, and I was given the opportunity to speak out and have a voice.

I have made a lot of progress with all of your help, but I wish I could say that a cure has been found, or even that we are close to eradicating this disease once and for all, but I can't.

I know your challenges are not easy, but I believe, that if we make, some hard choices, we can get to our shared goal. I truly believe, that if we redirect some of the funding, budget wisely, and fairly, we could be well on our way. While all medical causes are important, I feel that Alzheimer's and other related dementias are somewhat neglected, when it comes to funding compared to Cancer and HIV for example.

We have no cure; we have no way to slow its progress. There is a certain amount of discrimination, when funding is awarded, and I for one, would like to see this change.

Would the situation be different, if we had survivors who fought for the newly afflicted?

Would things be different, if we had the awareness campaigns attributed to other causes?

Would things be better, if more people, instead of suffering in silence, stepped up and said: 'we need help'?

I think the answer to those questions, is a resounding YES!!!

Why are people afraid to step forward? Because many of us are in denial, do you think I am looking forward to my life ending in such a devastating way?

Do you think I relish the fact, that my wife is going to have to take complete care of me?

Do you think I enjoy waking up everyday thinking: "is today the day I lose my voice or my ability to feed myself?"

Don't look me in the eye, and tell there is no funding, or that you can't get the support from your constituents! Please, fight for the more than 5 million Americans, living with Alzheimer', fight for me.

Someday, someone close to you, may be impacted by this disease. We are all paying the cost for not being proactive; we will all bear the cost if something is not done soon.

Talking Point #1

Recently, the government has implemented a national plan, that addresses the growing needs of more than 5 million Americans living with Alzheimer's

As part of the National Plan, the government is looking at enhancing public awareness, through awareness campaigns, websites, etc. But this needs to be done on a large scale, for it to be effective.

The National Plan, includes a commitment to prevent, and effectively treat Alzheimer's disease by 2025. The time is now, for the government, to make a commitment to provide the funding necessary to make this goal a reality.

It is my hope, that this advisory council, recognizes the value voices, of people living with the disease, can bring to this process, and includes our perspective, in the development of the national plan.

Talking Point #2

Let us talk about the stigma, of having Alzheimer's.

There are many misperceptions, surrounding Alzheimer's, to the extent, that even those of us who have the disease, often have misleading ideas about it.

Many caregivers, go through this journey alone, because they fear the reaction of others, to their loved ones diagnosis.

I have chosen to be an advocate, and share my story with others, on a national platform, as an Alzheimer's Association National Early-Stage Advisor. I do this because, I feel that the louder we shout about this problem, the more people will become aware of it. And as you know me, I do a lot of shouting.

This council has the opportunity, to make a significant impact, on the elimination of Alzheimer's stigma, and ensure, that individuals , and families living with dementia, do not have to experience this journey alone. Through public awareness campaigns, changing policies, implementing new policies, and prioritizing funding.

It is imperative, that you accept members on to the council, who are themselves are living with Alzheimer's disease. This will have a number of positive outcomes:

One, you will be publicly declaring, that individuals living in the early stage of Alzheimer's, are still capable of making meaningful contributions to society. Two, when you are looking at changing policies on our behalf, it would be of great benefit, to consult with individuals, living in the early stage of the disease. While some may think they know what is best for us, take advantage of our ability, to provide you with a firsthand account of the physical, mental, and emotional toll, the disease is taking on our lives, and the best way to support us. I say this, because I can assure you, that from my side of the fence, the view is very different.

Talking Point #3

After receiving my diagnosis, I felt a sense a relief, knowing that I had an answer, to the cause of my symptoms. I discovered, that Alzheimer's disease is the only disease, among the top ten, that has not had, the scientific input, in terms of funding, or the legislative interest, which has resulted, in the fact, that in 2013, this disease still cannot be slowed, cured or prevented.

  • Currently, Alzheimer's disease receives only $450 million for research, compared to $5.8 billion for cancer, and $3.1 billion for HIV/AIDS. I was astonished, at the lack of funding dedicated to addressing this health crisis
  • With the additional $50 million given to Alzheimer's research, and the proposed $80 million, we are headed in the right direction, but more needs to be done.
  • Historically, we know, that when the U.S. government makes a commitment to research, we have been successful, in finding disease modifying drugs. This has been the case, with HIV/AIDS, and for some cancers.
  • I appeal to this council, to do everything necessary, to ensure, that Alzheimer's disease, gets the exposure, commitment, and funding necessary, to change the course of the disease, before it impacts the lives of many more millions of Americans.

 

L. Everman  |  01-13-2013

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.


 

S. Goldberg  |  01-12-2013

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 M. Ellenbogen for your consideration.


 

T. Barclay  |  01-10-2013

I am a neuropsychologist and healthcare provider in Minnesota. K. 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.

==========

RE: Public comment for January 14, 2013 meeting

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.

ATTACHMENT:

Minnesota Provider Practice Parameter [Available as a separate link: https://aspe.hhs.gov/pdf-document/napa-public-comment-attachment-minnesota-provider-practice-parameter]


 


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