ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
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PLEASE NOTE: The Public Comments included here are not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration or the federal agencies involved in this project.
E. Einstein | 09-11-2014
Hello- I work with the Office of Autism Research Coordination, where we coordinate the activities of the Interagency Autism Coordinating Committee, and I'd like to find out a bit more about the way other FACA committees organize public commenting. For ASPE, I've seen the impressive database of comments, but am still wondering:
E. Nardozzi | 06-25-2014
M. Doraiswamy | 05-05-2014
Enclosed please find our announcement for a new translational neuroscience conference on Alzheimer's disease which will take place on November 6, 2014.
I would be grateful if you could share this with your council members and staff, and circulate within your groups.
S. Berg | 02-09-2014
Is this the correct address to submit suggestions in connection with the National Alzheimer's Project Act and implementation...
At age 85, I have a body with many cracks, crevices and creases, resting on a swaying foundation but God has been good and I am "chugging along" while missing June - I've got Memories by the dozen, and Reminiscences by the score... the day I stop remembering is the day my world will end! Visit June's Website: http://www.junebergalzheimers.com
S. Rush Duke | 02-09-2014
Please support this most needed cause. Thanks in advance.
This was sent from my PROSCAN table .
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
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.
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
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.
D. Walberg | 08-21-2012
Would it be possible to receive a copy of the PowerPoint from today's webinar?
M. Ellenbogen | 06-13-2012
Thanks again for all of your help in the past. This is the most important work, I have ever completed. Please help me make this link below go viral. Please add it to twitter, Facebook, your web site and place it on other websites in comments sections. If this can become viral, this will definitely have a huge impact on Alzheimer's perception.
P.S. If you should receive this message more than once I do apologies. My skills are not as good as they use to be.
D. McCracken | 05-15-2012
Where do I visit online to find out information about participating in this new study?
unnamed | 04-14-2012
I was asked to comment on the NAPA which I did. However, a more serious situation has arisen where Medicare has placed an unsurmontablehurdle in the treatment of and research with early Alzheimer's patients. I would hope you could direct my information to the appropriate groups.
I would like to inform you that National Government Services, the large carrier for Medicare in the Northeast and Midwest, has reversed their previous position and now DO NOT allow treatment of Alzheimer's patients with cognitive rehabilitation services including memory training. Despite the NIH report and AA recommendations as well as the National Alzheimer's Project Act calling for the dropping of hurdles in Medicare, NGS has removed cognitive rehabilitation as an acceptable treatment for memory loss IF it is due to a chronic disease such as Alzheimer's. If the brain disease is due to injury it is still allowed. The clear purpose of this change in the Rehabilitation LCD is to exclude Medicare recipients who suffer with AD from the services they require
I would greatly appreciate it if you could post this on a blog or other vehicle that can be read by Alzheimer advocates
C. Martin | 04-09-2012
I am pleased to see that Alzheimer's and other dementias are on the minds of our elected officials. As an adult protection worker and daughter of a mother with dementia I have seen what these diseases/illnesses can do to individuals and to their families. What is needed, especially in rural areas, is funding for more support programs/providers and education of families and providers to better understand the individual and to serve them with dignity. Each individual is unique in their deterioration, their needs, and how they should be served. Please keep the focus on Alzheimer's and other dementias in the forefront, it WILL affect you or someone you know.
G. Vianni | 04-01-2012
I am a retired RN. However, I now provide non-medical home care to individuals with Dementia and Alzheimer's Disease at a reasonable cost.
I also serve as their healthcare advocate, assisting the family to find good medical care for their loved one.
I think the world of you. Thank-you for attending to the needs of the aging population.
I am 66 years old. My client is also Sixty-Six, and requires constant care and attention. She is also a Registered Nurse. She responds so well to loving care. I am so fortunate to have these skills.
E. Haviland | 03-31-2012
My dad died with dementia. It's not a pleasant thought to look forward to!
E. Hely | 03-31-2012
I had worked in nursing homes as an Activities Assistant for years, and saw the debillitating effects of the disease on the people who had the disease, as well as their loved ones. I also have an aunt with the disease, and know of the toll this is taking on her children. We need the HHS to take action to find a way to prevent this disease and cure it.
There needs to be more research done on Alzheimer's Disease, so that this disease may be combatted.
N. Kouros | 03-30-2012
My father died a slow death from Altzheimer's, essentially losing his life before it actually killed him. In the process, it drained my mother's life to the point where she neglected her own health to devote 100% of her time to his care, and she died soon after. It drained me and my brother's as well, and now we live in fear of developing this disease ourselves.
The current NAPA plan, though well intentioned, is as effective as a Get Well Soon card. Please work to make the next version of the plan effective by putting some muscle behind it. It is hard to believe even in the current partisan environment that it would not receive bi-partisan support.
S. Smith | 03-30-2012
I feel sure you have been exposed to Alzheimers there are very few people now that haven't been affected by it, so there is no need to explain what it does, all we need is help.
Once the damage is done it can't be reversed, so please encourage urgent research to stop Alzheimers.
T. Horowitz | 03-30-2012
The devastation caused by Alzheimer's disease to so many families is well known. Please see to it that the resources needed to really push this plan forward are made available. We're depending on you.
D. Novak | 03-30-2012
My Mother died of Alzheimer's, it was a long, cruel and horrible spiral to death....so sad.
T. Sutton | 03-30-2012
Alzheimer's is a cruel disease. I saw my Grandma go from an active, sweet person to a woman who thought the person reflected in her mirror was another woman. I saw my Grandpa's heart break as the person he planned to spend the rest of his life with dwindled away to a woman who thought he was her father.
It's time for something to be done to eradicate this disease. It is a cruel disease that robs a person of their dignity and leaves the family feeling angry and cheated.
Please do what is needed to stop this disease.
S. Langan | 03-30-2012
Currently lies in bed at the home she's lived in for many years with my grandfather. I remember christmas with her, going over for sunday breakfast. She helped me study for school. Looked after me when I was small.
Now all she can do all day is lay in her bed and stare at the ceiling. She doesn't remember more then 5 minutes at a time. Gone are all the things I used to love about going to that house, and my poor grandfather has to take care of her, pay for her medical bills and do his best for her even though she's only a shell of his wife. A shell of the once-strong woman who beat cancer numerous times only to have her life taken from her slowly and minutes at a time.
Alzheimer's took my grandmother from me, and I want to support development and research on curing this horrible problem so others don't have to see their families hurt like mine does.
B. Lerner | 03-22-2012
As the baby boomers age we need to address the issues that will arise when some of them will suffer from dementia. Please include that in your bill.
M. Haynes | 03-22-2012
As you revise your policy on Alzheimer's it should also address Dementia which is the onset of this disease. Its inhumane to address one without including this illness.
L. Harwood | 03-13-2012
It is with great hope that I am writing this letter. My mother suffered from this disease for eight years. Not only did she suffer consequences to her health, but the whole family suffered with her. And, other family members in her family had Alzheimers in later years. Our generation is waiting for the disease to strike one of the adult children, with hope that we will not have to deal with this monster. Please, continue the research and give our family and other families hope to live long disease free lives.
K. Thompson | 03-13-2012
Per a Twitter Chat on #NAPA (#talkalz) today, please consider the following questions for the upcoming revision of the Act:
S. Colhard | 03-08-2012
Is this disorder reversible? PBS TV indicates this may be the case. Please address-
A. Brady | 03-02-2012
Some Alzheimer patients show the presence of the amyloid protein. Leakage of Cerebro Spinal Fluid antigenic proteins, like the antigenic tau proteins, could be the source of the antigens generating the autoimmune reactions as the origin of Alzheimer lesions.
The tau proteins have been identified as a significant participant in Alzheimer's disease. There are indications that they are originating in the ventricular cerebro spinal fluid and leaking as a result of intercranial pressure. Alzheimer's may be the result of pathologic CSF hydrodynamics. If this condition can be corrected it could halt the progress of Alzheimer's.
These new findings are important in understanding neuro degenerative disease, not only Alzheimers. We would be available to speak speak to you in more detail.
C. Socolov | 03-01-2012
I am filled with wonder reading about the American historical decision in the ADRD problem: NAPA. It's not only a simple Government decision, but also a decision of the American People. The US Government and People continues to be an example and source of inspiration for all the World, because the ADRD problem involve the human, especially the human future.
In my opinion, the key of the origin of the ADRD will changed all the clasical medical science. It's inevitable to reflect about new ways, about new concepts in the medical science. For example, think only about one fact: in the fatal moment of an AD patient, frequently all the serum general data of this patient are...perfect.
D. Woodard | 02-29-2012
The plan is comprehensive but fails to address a fundamental problem. The real funding decisions are made by the "peer review" process, and in Alzheimer's, at least, the peer review process is seriously flawed and excludes new researchers with new ideas, not because the reviewers consciously want to do this, but because the system makes it almost inevitable.
The reviewers, like all good scientists, are convinced their own ideas are right and worried that giving money to those with different ideas will take away funds from their own research and cost lives. Moreover, because they are working full time on their own research they clearly have no time to actually read the papers of grant applicants and just glance at the number of publications and the journals they appeared in. They tend to decide early on whether they support or oppose an idea, and go with their gut, providing details only to justify their position. This turns labs into paper mills that produce no real advances. Consequently I have been told many times that the only way to get funding for a new idea is to complete the entire study before applying for funding.
I work on the fundamental biochemistry of Alzheimer's, in the laboratory of Dr. Shaohua Xu, who was the first to image tau colloids using atomic force microscopy. We've worked months on NIH grants that were turned down by reviewers who obviously had not read the relevant papers and did not even make an effort to understand the proposal. Having research section members recuse themselves from judging their own grants obviously does not make this process objective; scientists are as susceptible to bias as any other human being. To deny this problem denies basic human psychology.
IF NIH expects to solve this problem, the NIH research section directors, who are not supported by grants, should have the authority to make the final funding decisions. They may have the help of reviewers but should have the full power to accept or reject reviewers' comments. They may not choose to fund our proposals, but at least they will be unbiased, and they have an incentive to find a cure, not to defend a theory.
R. Sill | 02-29-2012
I have been following the updates on the National Plan and wanted to make sure you were aware of Dakim in the event there are any partnership opportunities that you become aware of that could benefit from our brain fitness program under the goals established in the plan.
Dakim was started by Dan Michel as a result of his personal experience caring for his father who suffered from Alzheimer's. During that ordeal he noticed that every time he challenged his dad with something new his father was more alert, focused and his mood was improved.........(empirical evidence). He then started to become aware of the research studies describing neuroplasticity and which linked long term cognitive stimulation, where different areas of the brain are routinely exercised, with reduced symptoms of dementia. When he looked to purchase a product or program that did just that, he found nothing.........so he decided to build one.
The result is Dakim BrainFitness. Our program is the number one brain fitness solution sold to America's senior living market and we are now offering as a DVD software package to seniors aging in place at home and to healthcare professionals to use with their patients suffering from cognitive decline.
Our product was designed, from day one, to be used by boomers and seniors, the group most at risk for Alzheimer's disease. It has also been clinically tested by UCLA and shown to improve memory in the folks that regularly used it. Dakim BrainFitness is not a cure, but it is helping individuals and families as they attempt to cope with the disease.
I would be most pleased to send you a copy of our software so you and your staff are aware of its existence. But most important to me is that we become involved in some way with what you and your staff are doing so we do not get excluded from any initiatives that could benefit from all the work we have done to help stimulate the minds of our aging population!!
If you would kindly point me in the right direction, or let me know who to contact, it would be most appreciated. Thanks in advance very much for your assistance and I hope to meet you in person in the near future.
P.S. I noticed on Linkedin that you earned your doctorate at USF. Our program is currently being used in another clinical trial being conducted by USF. The lead investigator is Elizabeth Gagnon-Hudak, Doctoral Student, School of Aging Studies, USF.
C. Alper | 02-27-2012
I strongly support Mr. Vradenberg's plan and plea to eliminate alzheimers disease by 2025, It is clearly becoming epidenic in proportion and needs strong advocacy and support. only the government with private help can produce these results so let us push for both.
L. Everman | 02-23-2012
$450 million for Alzheimer's research; $3 billion for AIDS. In 2011, total Medicare and Medicaid spending for individuals with Alzheimer's disease was estimated at $130 billion. $450 million is NOT enough and 2025 is NOT soon enough. We can do better. Spend the money on the front end; alleviate the suffering and find a cure NOW!
M. Ellenbogen | 02-23-2012
By now I think most of you know who I am. I will be coming to Washington DC in April from the 23-25. I had the opportunity to meet with many members of congress and senate this past year. I even had an opportunity to speak with Melody Barnes and Jeff Crowley, but it saddens me that they moved on. I would love to have the opportunity to meet with, President Obama, so he can personally understand what people like me deal with and our needs. I hope he is willing to hear from one of his constituents, that represents so many.
I am reaching out to many of you because I am hoping one, will be able to pave the way for my visit. Please help me accomplish this goal, while my mind is still functioning. If at all possible I would like to meet on the 25th, if that is not doable, I can be there on the other days. Remember I am 53 years old and most people are not willing to take this step, but someone must for all those who can't.
Please help me with my dreams of changing this world around Alzheimer's.
P.S. I will need access for my wife Shari, who is in the medical profession, and someone from the Alzheimer Association to accompany us.
N. Richeson | 02-18-2012
Hi, Is it too late for public comment for this project?
M. Ellenbogen | 02-05-2012
Please share this with the non and federal committee. Thanks
M. Fried | 01-18-2012
I am writing to you on behalf of the estimated 134,000 individuals battling Alzheimer's in Oklahoma and Arkansas. That number will grow significantly over the next two decades. The time is now for a comprehensive plan for America to address this escalating epidemic.
My family understands the impact of Alzheimer's. After a 17-year degenerative struggle, my grandfather lost his battle with this devastating disease. This battle is one that I take on as my mission, both because of my role with the Alzheimer's Association, and due to my family's experience.
We urge you to maintain the course you have set toward a bold, urgent and accountable National Alzheimer's Plan. It is imperative that the National Alzheimer's Plan includes practical applications for everyone impacted by the challenges of Alzheimer's to accompany the sound policy that will be presented in the final plan.
M. Brennan | 01-16-2012
To prevent Alzheimer's disease, let's consider how people in countries with little Alzheimer's disease live (differences in diet? life style? stress? sleep? environment? other differences from us?)
Let's assure funding for any reasonable research proposal that could help prevent or delay Alzheimer's. The federal deficit is no excuse for skimping on this urgent need. The deficit will be far greater if we don't prevent or delay Alzheimer's disease.
N. Hoffman | 01-13-2012
As a geriatrician for many years, my only comment is that unless this education, training, etc. with a focus on such a prevalent disease, is started early on in medical school, PA, Nursing school, etc. and fully integrated into post graduate training for internal medicine, family medicine, internships, practicums, etc. not much will change. Unless academic medicine has a reason to buy in, we will continue to have medical providers lacking knowledge and skills in these areas. We may need more a focus on this for mid level providers since general internal medicine and family medicine are slowly declining in our health care system.
J. Cavanaugh | 01-12-2012
Why no psychology? See below
"I learned about this call for feedback earlier today via a different listserv. Comments on that listserv made me curious enough to read through the draft. I was surprised when I realized that the words "psychologist" or "psychology" do not appear once in the Draft of the National Plan. Psychologists are not listed as one of the essential disciplines under "Goal 2," though many of the services that we provide are noted as vitally important to focus on in the coming years. I see this as a serious error - not because of my desire to protect the "turf" of psychology, but because it simply does not reflect the reality of healthcare today for persons with Alzheimer's Disease. HBPC is but one healthcare setting in which psychologists play an important role in the care of these patients - not to mention the many, many psychologists conducting research in this important area. ~ Mary F. Wyman, Ph.D., Clinical Psychologist, Home Based Primary Care"
B. Brock | 01-10-2012
I would like to make you aware of the resource described below.
In past years the focus of health care professionals was on patient's physical/medical problems primarily because little was known about dementia and its ravaging effects. Oftentimes dementia patients tend to communicate the state of their health care situation incorrectly to health care professionals because their cognitive abilities have been affected. Simply put, they don't understand questions being asked of them. Other dementia patients have limited vocabularies due to their dementia.
Dementia patients often give incorrect yes or no responses to medical questions. Sometimes costly health related decisions are repeatedly made due to the fact that health care professionals assume because a resident may speak well, therefore they must think well or worse yet, because a resident doesn't speak, therefore they assume the patient has lost their ability to think. This costly miss-match communication approach to identify appropriate health needs of memory impaired patients may lead to expensive health care mistakes. Plus it usually ignites a downward spiral of the wrong type of health care services and development of inappropriate care plans that leads to repeated re-admissions.
Currently health care professionals are challenged to reduce re-admissions. Most often, level of health care services is determined by health care professionals without regard to patient's current level of cognitive understanding. These miss-leading assumptions may drive the re-admission process higher and higher.
Today soaring numbers of elderly dementia patients requiring healthcare has brought forth a vital missing piece of health information regarding this vulnerable population. The missing piece of information is the identification of each patient's cognitive factor. Health care professionals have enormous amounts of information about the patients' physical state but lack valid and reliable information regarding their cognitive condition. We even develop care plans primarily based on patients' physical condition but fail to include or identify their cognitive state. This hap hazard approach of treating memory impaired patients is very costly to say the least.
The need for a tool that can identify each patient's cognitive factor is paramount if health care professional's goal is to treat the "Whole Person", keep patients safer, reduce fall risk and diminish expensive care transitions.
The Reality Comprehension Clock Test ( 1999 RCCT Brock,B., et al) is a standardized cognitive assessment that has a valid and reliable scoring process that identifies patients':
The RCCT unlike other clock drawing tests provides data that leads to the development of appropriate care plans.
The RCCT's powerful information can:
Incorporating the cognitive factor, transfers into care of the whole person not just patient's physical needs. The valuable RCCT sets the precedent for a Dramatic Change in healthcare.
The RCCT is in the National Alzheimer's Association's Greenfield Library
Published: Sept 2005 "Visual Spatial Abilities and Fall Risk" An Assessment Tool for Individuals with Dementia"
Gerontological Journal of Nursing
Published: May 2005 "Application of Reality Comprehension Clock Test as a screening of patient with vascular cognitive impairment- no dementia."
Chinese Journal of Rehabilitation Medicine
April 2009 Reality Comprehension Clock Test on CMS MedQIC Resource list under Patient Safety
Education and Certification:
I am one of the research authors of the RCCT.
R. Conger | 01-09-2012
WHY CAN'T THE STATE OF TENNESSE SEE HOW MUCH CHEAPER IT WOULD BE TO KEEP YOUR FAMILY MEMBER AT HOME, INSTEAD OF HAVING TO PUT THEM IN THE NURSING HOME. YOU COULD PAY HALF THE MONEY IT TAKES FOR A NURSING HOME VERSES THEM STAYING AT HOME. IF THE FAMILY COULD JUST GET HALF THE MONEY AND THEY COULD HIRE SOMEONE TO STAY AT HOME WITH THERE FAMILY MEMBER WHILE THEY STILL HAVE TO WORK. IT WAS THE HARDEST THING I EVER HAD TO DO WHEN I HAD TO PUT MY MOM IN THE NURSING HOME DUE TO THE EXPENSE OF PAYING SOMEONE TO STAY WITH HER WHILE I HAD TO WORK. THE PRICE THE NURSING HOME CHARGES I COULD HAVE HIRED SOMEONE FOR HALF THE PRICE BUT THERE WAS NO FUNDS OUT THERE TO HELP FAMILIES KEEP THEM AT HOME. BUT WHEN SHE WENT INTO THE HOME THEY PAID EVERYTHING EXCEPT FOR TAKING HER CHECK AND ALLOW HER 40.00 DOLLARS A MONTH, I DON'T UNDERSTAND WHY TENNESEE COULDN'T DO LIKE SOME OF THE OTHER STATES, THEY HAVE PROVED THAT IT WAS A LOT CHEAPER AND THE PEOPLE DONE BETTER AT STAYING AT HOME. PLEASE LOOK INTO THIS . THANKS
M. Hogan | 12-21-2011
Please advise about the status of on-going comments. Can I assume that you continue to take comments each month and that they are sent to advisory council for review?
S. Stimson | 12-08-2011
We would be interested in being on the Advisory Council for Alzheimer's research Care and Services. Is this possible?
NCCDP ALZHEIMER'S DEMENTIA STAFF EDUCATION WEEK
Z. Khachaturian | 11-12-2011
Please find attached the pdf of an editorial concerning NAPA in the current issue of Alzheimer's & Dementia: Journal of the Alzheimer's Association. This document includes a set of recommendations for consideration by NAPA's Advisory Council [and/or the Secretary, DHHS] in drafting the National Strategic Plan.
I have also attached the draft of a memorandum concerning PAS2020 effort to formulate a specific recommendation to NAPA concerning a national initiative to establish 'public-private partnership' for discovery-development of treatments for AD.
Let me know your thoughts on these two items
Prospects for Designating Alzheimer's Disease Research a National Priority [Available as a separate link: http://aspe.hhs.gov/daltcp/napa/Comments/cmtach21.pdf]
Perspective: Public-Private Partnerships to Develop Treatments [Available as a separate link: http://aspe.hhs.gov/daltcp/napa/Comments/cmtach22.pdf]