List of Comments
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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.
H. Shrestha 10-26-22
I am so grateful for having an opportunity to learn from this meeting. I am continually attended the meeting since 2018 as an international observer and knowledge-seeker, PhD student as well as MCI patient.
Here is my brief comment.
There is no ample discussion and presentation about culturally-safe and competent dementia care for diverse Indigenous communities in the US and would like to request NAPA to give this topic and issue a highest priority as policy advocacy, research and academia arena to develop culturally-safe dementia care policy, plan and strategy to create a dementia-equity society for American Indian, Alaska Natives and Hawaiian Natives as well and support for their community organizations and academic.
With deepest gratitude and appreciation.
M. Sharp 10-26-22
Hello and thank you for this opportunity to offer comments to the NAPA council. My name is Matt Sharp and I am the Advocacy Manager for the Association for Frontotemporal Degeneration or AFTD. I would like to take this opportunity to let people know about AFTD’s 2022 Well-Being in FTD Pilot.
AFTD Pilot Grants provide seed funding to advance the careers of early-stage investigators focused on the full spectrum of FTLD disorders. Pilot Grants support recipients in developing an independent research program and generating data that will be the basis for follow-on funding applications to other funders.
The Well-Being in FTD Pilot Grant supports research to improve the well-being of persons diagnosed with FTD, their families and care-partners and to improve access to equitable, high-quality diagnosis, care, support, and research participation options. Examples of suitable research topics include:
- Nonpharmacologic interventions to relieve symptoms or improve functionality.
- Interventions to promote caregiver health, well-being, or understanding.
- Interdisciplinary and Neuropalliative care approaches and other novel strategies for improving clinical care outcomes.
- Strategies for adapting interventions developed in other neurodegenerative diseases.
- Interventions to reduce inequity in access to diagnosis, care, or support services.
- Interventions to improve the well-being of research participants and to improve the equity of access to research participation.
- Research on social determinants of health in FTD, particularly the factors underlying disparities in access to FTD diagnosis and care.
- Health economic and outcomes research focused on FTD.
The deadline for applications is Friday, November 11, 2022, 8:00 pm ET. Detailed instructions for completing the Pilot Grant application can be found on the AFTD website. If you have any questions, please do not hesitate to contact AFTD’s HelpLine.
R. Grimm 10-25-22
I serve as the Manager of Health Programs, Aging & Caregiving at the National Down Syndrome Society. NDSS is the leading human rights organization for all individuals with Down syndrome.
My work at NDSS centers on connecting members of our community directly with experts in the field. Specifically, I manage the NDSS Adult Summit, which is an interactive conference that spotlights issues related to aging and Down syndrome through a comprehensive, whole-person approach. The summit cuts across ages and content areas and seeks to provide our families, caregivers, and professionals with resources and materials to help them navigate the challenges that are endemic to aging and disability.
In the past, much of the work of disability advocates focused on children, but due to countless advancements in civil rights protections, healthcare, education, employment, and an overall improved cultural awareness of disability, people with Down syndrome are living longer than ever before. At NDSS we understand that the next set of critical policy challenges lies in the adult and aging space. As you’ve heard from my colleagues over the past year, we know that the ecosystem of services and supports for this part of our community is not yet ready to meet its needs, and, as the adult population continues to grow, we expect to find innumerable opportunities to improve the policies that address aging.
We are here to help this council work proactively to support the Down syndrome community. I urge you, once again, to establish a special subcommittee to focus on how HHS can improve the diagnostic and clinical supports available to individuals with Intellectual and Developmental Disabilities, including Down syndrome. We believe that doing so is in line with last December’s updates to the National Plan to Address Alzheimer's Disease -- especially the new Goal 6, meant to promote healthy aging.
I said earlier that my work at NDSS revolves around connecting members of our community directly with experts in the field -- and that is exactly why I am here today. The members of this council, both federal and non-federal, are experts in the field of Alzheimer’s disease and related dementias. I am here to offer you a direct connection to our community, which has a clear need for your knowledge and support.
Thank you very much for the opportunity to address the council today. NDSS is ready -- and eager -- to work with you in partnership to improve the services and supports people with Down syndrome are able to receive as key members of the Alzheimer’s community.
M. Fisher 10-24-22
I live in Oregon and our family’s long term care access experience represents the disease of frontotemporal dementia and finding long term care for my dad on the island of Maui. I am also an impassioned Ambassador in the state of Oregon for The Association for Frontotemporal Degeneration and have been sharing our story far and wide in the hope that we can improve access, experience, and create training and more inclusive care for this lesser known and discussed dementia.
After 10+ years of observing increasingly odd and uncharacteristic behaviors, and another 3 years of misdiagnosis of severe depression and actively seeking an accurate diagnosis, in January of 2018, at the age of 70 he was diagnosed with behavioral variant FTD -- his MRI showed severe frontal and temporal lobe atrophy and vascular dementia.
The incidents that led up to his diagnosis would take a lot longer than two minutes to explain, but he went many times to the ED, six times to county jail in less than a three month timeframe, stealing alcohol from stores with an eventual lifetime ban from Costco, wandering for miles, breaking his tibia on one walk -- not believing his doctor it was broken and refusing care, had several delirium induced episodes -- jumping out of a moving car and attempting to “enter” the bathroom in the 9th floor of a hotel that was actually a balcony while my mom desperately held him back, are just some of the more horrific experiences, mostly faced by my mom dealing with my dad.
Being that Maui county is rural, placement options for my dad were not many. Like just two -- both run by the same company. She attempted to hire in home care, but he would not allow it, she tried an adult day program to get even a short break, but on the very first day, he was able with no tools to dismantle the locked gate mechanism, alluding security and getting several miles away before the staff discovered he was missing. They had assured her that they knew what FTD was and would not have any issues. In reality they were wholly unequipped to manage my dad for even a few hours. He was still strong physically, but his brain was selectively broken. He retained all of his professional mechanical capabilities, but he had no ability to control impulse, understand time, short term memory, lacked empathy, or awareness of the impacts of his actions on everyone around him. He still managed to still be a kind and loving father, husband, and person that he always was, but it took everything we had, plus some, to keep him safe. My mom could not get help from the only 5 bed psychiatric ward on island, even for temporary hold while she tried finding medications that would help -- citing he had a brain disease not mental illness.
A year into his diagnosis, my mom simply couldn’t do anything more and the situation was dire, so she reached out to the one privately owned place that had a “memory care”, and sharing her story, they denied her flat out, citing liability. He was too young, too active, and yet even with dementia they wouldn’t take him. A year later a new administrator came in, someone my mom knew, and so she tried again, desperate for help. This time they said yes, sharing that they knew what FTD was, their staff was trained in it, and capable of meeting his care needs. My dad did not have Alzheimer’s, and I knew Alzheimer’s well as my maternal grandmother had it and at the end of her life died alone in a geriatric psych ward in Oregon -- a week after placement, moved because they said she was combative at her care home. That memory haunts me to this day, and what happened next for my mom is not acceptable either.
In February of 2020, my family placed my 72 year old dad. The enormous toll of caregiving for many years for my dad, left my mom physically and emotionally spent -- in fact several days after placement she fell and broke the top of her femur off and had to have emergency hip replacement surgery. She was no longer able to continue to manage him at home.
We also looked off island for help and were told multiple times that my dad would not be accepted anywhere without an exam by an LTC, and of course we couldn’t get him placed. The only option one healthcare system in Oregon gave me was get him to the mainland, transport via medical transport to an ED, where he could be kept for months until a bed opened at a geriatric psych ward opened up. And how would we “hold” him? Drug him? Lash him to a bed? Where is our humanity? Why are there no humane transitions in care solutions for this dementia?
When I visited the LTC before he was placed, I brought FTD educational materials and offered my help in training the care team. The facility educator blew me off saying they knew all about FTD and were trained to it. I didn’t believe her, but she refused my offer. I also looked around and realized that several of their security gates were broken and the keypads were visible to the residents, and I knew that my dad would quickly figure them out -- which he did. Escaping on two occasions early on. I told them they needed immediate fixing, but they did not. They actually had for a short period used a staff member to “guard” the door down from my dads’ room that directly accessed outside and right onto the busy street.
Within days of placement, I was told that he needed more medication to deal with his agitation and I worked with his geriatric psychiatrist almost daily to try and find a dosage of meds that would work to help make him more compliant. I was also told that we must hire an outside agency to provide 24/7, 1:1 care, I have heard from many other FTD families that supplemental care is not uncommon an ask.
The agency we hired to provide an additional level of 1:1 care at a price of $4,000 a month. That is in addition to the $11,000 a month mom paid to the facility for a shared room and board. Two months in, my dad was transferred to another facility run by the same company due to his rapidly deteriorating physical and cognitive state. He was able to walk and talk when we placed him. Within a couple of months, he could no longer do either. His deterioration was rapid and irreversible.
We desperately need expanded awareness and education of the other dementias, improved staff training, expanded awareness and education of the other dementias, inclusive facility design – beyond memory, and most importantly, safe, and adequately staffed LTCs. I thank you for the opportunity to share our family’s story and hope that it will inform and improve the future experience of individuals with FTD and their families who love them.
D. Ducca 10-24-22
Good afternoon, I am from Michigan. I would first like to say thank you to each of you on this committee for the work that you are doing.
Dementia is very personal to me. I lost my husband of 20 years, Jim, to Frontotemporal Dementia in May of this year. Throughout his 8-year journey with FTD, we experienced many obstacles with regards to his care.
Facilities in Michigan and all over the country are faced with both a lack of employees and a lack of knowledge about FTD. What may work for someone afflicted with Alzheimer’s, may not work for someone with FTD which can lead to potential problems with care. I believe educating workers on the different types of dementia is badly needed. There needs to be continuing education programs for workers that cover other types of dementia besides Alzheimer’s. I toured several facilities when looking for respite care that did not have any knowledge of FTD, or if they had heard of FTD, they had very little actual experience with it. Additionally, more facilities need to be equipped to handle younger residents with cognitive impairment who are still mobile, like many people with FTD are.
Hospice acceptance guidelines should also be more flexible. Jim did not qualify for Hospice until he stopped walking, 2 months before his death, despite me performing all his ADL’s for him. More access to social workers and programs is needed as well. While looking for a day program for Jim, I reached out to my Area Agency on Aging to see what was available for him. Because he was under the age of 60 at the time, I was told no program would take him because he was not considered geriatric. Not all types of dementia’s affect people late in their life. We need to do more to help those families that are struggling to navigate diseases such as FTD that afflict people at a younger age. We need support for navigating Medicare, Medicaid and long term care. Our children need help watching the changes in their parent or grandparent. While this disease has changed my family's life forever, we are committed to helping those newly diagnosed walk an easier path in our footsteps.
Thank you for allowing me to speak today.
M. Ellenbogen 10-24-22
I have 3 points to make now and am sending a separate written email to be added to the NAPA meeting record. I just loved the program Dr. Meier spoke about.
My first point is operation warp speed showed all of us what could be accomplished with great success when public and private partnership works together driven by someone in the White House. Let’s do the same for dementia. The payoff would be even bigger if we can accomplish the same results in such a short period of time.
Second -- We have made great strides with many new successful programs and literature in the last few years. Yet they are hard to find these good resources. There are many old and bad ones out there, how can we get the good ones highlighted and share their key locations so key folks can find these things much easier and act on them?
And last -- As a person who is living with this disease I cannot understand for the life of me why I cannot express my dying wishes and they cannot be honored. Why can we not place laws to help people like me because I have seen to many with dementia take their lives to early because of that reason. I don’t want to suffer when my time comes and I don’t want my family to see my suffering drag on even longer. I want to die within 12-24 hours not 7-14 days.
This message is geared to the HHS staff. I am looking to clear my name for what you folks did to me when you had banned me years ago. You are now taking credit for celebrating your 10 years of NAPA but I am not sure you should do that if you cannot acknowledge that your team made a serious error in judgment how you treated a person ling with dementia. And lets also be honest on why you did this. It was not about what I said at NAPA but what I had said at the World Health Organization when we were in Geneva. Everyone else involved had apologized for their actions to your response. I am hoping to hear the same from HHS. My parents came here from a communist country to make a better life for me. But you folks had treated me worse than being in a communist country when I was a fine standing citizen who has done so much to help this country. It is my hope that we can put the incident behind us and insure this never happens to another person with dementia because you now have better polices in place from preventing this from happing to anyone else. I want things to go back to the old way.
June 30, 2022, radio interview: https://www.youtube.com/watch?v=RMwUpWzvbsg. (You want to listen to it starting at 58:41.).
S. Terman 10-23-22
The great need for successful advance care planning for advanced dementia is widely recognized. This cruelest of terminal diseases can cause severe personal suffering and huge burdens to loved ones. For many patients, the only way to prevent prolonged dying with suffering is to limit how long patients are forced to suffer after they reach an advanced stage of dementia.
Dementia-specific advance directives can request a specific intervention that allows incapacitated patients to die. But huge problems surround this approach; for example, (A) Will all concerned agree “when” that time has come? (B) Will all concerned agree that the order, “Cease assisted oral feeding and hydrating,” is appropriate clinically, legally, ethically, culturally, and consistent with religious teachings? (C) Can this order survive the claim of authorities that the patient changed her mind -- especially if the now-incapacitated patient uses nonverbal gestures that clearly indicate she wants caregivers to assist oral feeding, even though she reached a condition that, during advance care planning, she previously judged would cause severe enough suffering to want to be allowed to die?
Work that began in 2004 led to an illustrated living will in 2009, which had about 50 illustrated cards. Patients living with early dementia can likely use it since its reading comprehension level is third grade. Since then, about two dozen strategies were added, to increase the probability of success, defined as physicians and other providers will promptly honor patients’ requests.
An easy way to view or download published and preprint articles is to visit tinyurl.com/TermanDementiaArticles. To briefly state the problem: most advance directives are flawed, and surrogates’ substituted judgment is not reliable. And the solution: irreversible severe suffering can be the sole, compelling criterion; “Future POLSTs” can serve as binding documents that other providers must honor; additional strategies can make patients’ end-of-life wishes irrevocable; and advance security technology may remove doubt by verifying persons’ identities and validating documents were not modified. Other articles focus on overcoming common criticisms; and speculate on why authorities oppose key elements of this plan.