ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
Public Comments on Advisory Council Meeting, January 2018
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.
F. Li | 01-19-2018
On behalf of the Physicians Committee for Responsible Medicine, I would like to thank all the council members and support staff of the NAPA Advisory Council for your tireless efforts towards finding solutions for Alzheimer's disease. As a nonprofit organization based in Washington, DC working to advance medical research, we support the mission and goals of the National Alzheimer's Plan and hope to provide useful insights towards finding a disease-modifying treatment for Alzheimer's disease and related dementia (AD/ADRD) by 2025.
As the research subcommittee discusses "The Journey from Targets to Treatments", we urge the Council to consider three research paradigm shifts that may help us develop a disease modifying treatment for AD/ADRD:
As it was once said, "The definition of insanity is doing something over and over again and expecting a different result." The many failed trials in the past decades suggest that we ought to do something different. Given the unreliability of the animal models and the poor candidacy of amyloid and tau as drug targets, we recommend the Council to focus on supporting research for human-relevant models, lifestyle risk factors as targets, and non-pharmacological lifestyle interventions for the therapeutic development pipeline. These conceptual paradigm shifts may be our only promising hope to develop effective interventions to prevent or reverse AD/ADRD in our nation by 2025.
Thank you for your attention to these comments. I can be reached using the information below to answer any questions or discuss these comments further.
M. Sharp | 01-19-2018
Thank you once again for this opportunity to provide input from the perspective of a "related dementia". I am the Program Manager for The Association for Frontotemporal Degeneration.
I look forward to the presentations this afternoon and hope my comments are not preemptively redundant or too off target but I would like to offer some input on drug development in FTD and let everyone know about a new funding opportunity from AFTD.
Designing studies and clinical trials in FTD is a tremendous challenge for many reasons. For starters, as a rare disease, it is hard to recruit enough participants to sample and produce statistically significant results. Also there are multiple pathologies in FTD that underlay a confusing mix of clinical presentations and symptoms. This makes it exceedingly difficult to identify clinically meaningful end-points by which to measure the effectiveness of a treatment. And that is just scratching the surfacing. Basically, the closer you look at designing trials and studies in FTD the more complexity you see. Because of the many and varied challenges AFTD's approach to maximize the success of our research efforts has been to work collaboratively with other organizations and combine resources to find creative solutions. For example The Frontotemporal Study Group is an AFTD program that brings together stakeholders from industry, academia, NIH, FDA and independent foundations who share a common interest in accelerating the development of effective treatments for FTD and related disorders. And last spring AFTD launched the FTD Disorders Registry with our partner the Bluefield Project. There are now over a thousand people registered and ready to inform pharmaceutical companies, academic researchers, regulatory and policy groups about patient-focused trial design and cultivate a collaborative environment for drug development.
Finally, I would like to let everyone know that AFTD has recently announced a new pilot grant to support the development of nonpharmacological therapies for FTD. We have recently released a request for proposals for nonpharmacological interventions and tools with the potential to have a positive impact on the quality of life for persons diagnosed and their families. It is a one year grant up to $60,000 and is open to US and international investigators. There is more information on our website and anyone who is interested is welcome to ask me for more details.
M. Hogan | 01-19-2018
Good afternoon. Thank you for the opportunity to once again address the Council. I am a steering committee member of the NTG of which Dr. Janicki is Co-Chair. I wish to follow up on his remarks.
The NTG was formed late in 2010. Our primary goal at the time was to ensure that individuals with ID and their families were included in the National Plan to address AD and other dementias. We have been present at almost all of the meetings since the Council first met, advocating for this vulnerable group of individuals. Some of you at this table have come to expect that we will be present and vocal regarding the needs of those with ID and dementia and their caregivers and/or care partners.
We come to this table quarterly with specific requests for the population we represent. We come to minimize the isolation often experienced by individuals with ID and the continued tendency to offer parallel opportunities that are separate and not always equal.
I believe that it is important that you come to know who we are and recognize the efforts of the NTG outside of this setting. As a small grass roots organization we are focused on increasing support and improving caregiving standards for those with ID, and their families. To this end have done the following:
And most importantly, for me personally, is the provision of information to families and the hosting of a monthly online family support group for family members from across the US. We are now assisting other organizations that are trying to develop family support options on a more localized level. No caregiver deserves to make this journey in isolation.
As people age and are at increased risk for AD or other dementia, the demands that lie ahead are many and partnerships critical for success. The NTG wishes to reach out and support the efforts of the NAPA Council as you define your next steps. We are hopeful that you will be inclusive of all people in your future plans, that you will make a sincere effort to better understand this special population, that you will take note of our appeals and reflect on what life must be like for those who have faced a lifetime of challenges.
We, in turn, at the NTG can assure you that we will continue to remain dedicated to improving quality of life and quality of care for a population that is often undervalued and underserved and who are very often cared for by a workforce that is undervalued as well. We can and must do better.
M. Janicki | 01-18-2018
I and Dr. Seth Keller are the co-chairs of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry and is associated with the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago (http://www.aadmd.org/ntg).
While we were recently discussing the role of the NTG with respect to the Council, it struck us that many Council members may not know why we are here and why we make comments to the Council -- and what are our 'wants'. The NTG was formed in 2010, just before the passage of the National Alzheimer's Plan Act, with a stated mission to advocate for people with intellectual disability affected by dementia and their families and other caregivers. When the NAPA Council came into being, it was opportune for us to have a voice at the national level on behalf of a critical segment of adults affected by Alzheimer's disease and other neurocognitive conditions resulting in dementia.
There are many causes of intellectual disability, some genetic, some due to disease, and some social or environmental. Among the genetic causes, Down syndrome is the one most commonly associated with dementia as adults with Down syndrome are at high risk of Alzheimer's disease and generally manifest early onset dementia. In the United States, it is generally acknowledged that although most persons with an intellectual disability are affected by dementia to the same degree as other adults in the general population, some may be affected earlier and at a greater rate.
The Alzheimer's Association estimates that currently some 5.2 million Americans are affected by dementia, many of whom have Alzheimer's disease. Of these, some 200,000 affected adults are under the age of 65. This includes adults with Down syndrome, many of who are among those 200,000 adults affected with 'early-onset dementia'. Generally, it is believed that about 6% of adults with an intellectual disability will be affected by some form of dementia after the age of 60 (with the percentage increasing with age). For adults with Down syndrome, at least 25% will be affected with dementia after age 40 and at least 50 to 70% will be affected with dementia after age 60. With respect to numbers, it has been projected that there may be at least 54,000 adults with an intellectual disability and mild cognitive impairment (MCI) or dementia in the United States, and that the number of such adults affected by dementia would most likely triple over the coming years.1 Studies have also shown that some 33,000 adults with intellectual and developmental disabilities and dementia are currently living at home with older or other family caregivers. While the number may seem modest with respect to the 5.2 million overall cited by the Alzheimer's Association, these 54,000 comprise a group with high dependencies and a high impact on caregivers, many of whom may have been providing lifelong care. They also represent adults whose needs will have an impact on national long-term care resources as they are Medicaid eligible.
With increased life expectancy and greater numbers of aging people due to the 'baby boom' effect, the number of older at-risk adults will increase significantly over the next twenty years -- as will the prevalence of dementia. The Alzheimer's Association projects that the number of older persons affected by Alzheimer's disease will to about 7.7 million by 2030. This growth also will be mirrored among older adults with an intellectual disability.
There are many similarities in needs between adults with intellectual disability affected by dementia and other adults similarly affected. Both need targeted early detection, diagnostic services, counseling, aid with planning for the future, housing assistance, care management, supports for caregivers, and other special services as dementia progresses.
There are, however, some differences as well. The NTG and other intellectual disability organizations, such as the American Association on Intellectual and Developmental Disabilities, National Down Syndrome Society and The Arc, have noted that
Now, to the point of why we appear before the Council. We believe that these distinctness areas deserve due consideration by the Advisory Council on Alzheimer's Research, Care, and Services and their remedies warrant inclusion in the National Plan updates -- especially as this group is one of the 'populations disproportionally affected' noted in the original National Plan.2 Further, we ask that the Council recognize that dementia has a particularly devastating impact on people with an intellectual disability and their friends, families and the staff who may be involved with them as advocates and caregivers -- and give this population and its needs due consideration in the Council's deliberations. The National Task Group believes that the federal Council should continue to include -- and expand on -- concerns and considerations for people with intellectual disabilities in its annual updates of the National Plan. To this end, the National Task Group stands ready to assist and contribute to such efforts.
S. Hall | 01-16-2018
I am a care partner and advocate. My husband has frontotemporal degeneration. I am active in the FTD community. This population is often overlooked due to their young age. Programs and services for those with FTD and their care partners are very difficult to find. Most organizations for the aged population do not offer anything for someone under the age of 65.This population is often rejected from memory care facilities due to their age and diagnosis. If they are admitted, they are often asked to leave.
There needs to be a national certification for those working in memory care so they are trained to deal with ALL dementias and ALL symptoms of all dementias. The stress on these younger families is enormous. Many still have young children at home. The cost of their care is twice that of Alzheimer's, which has been shown in a recently published AFTD financial burden study. This leaves younger families financially destitute.
Care partners of those diagnosed at a young age need real respite programs. They often have to work while hiring help at home, as their spouse has left their job and is on SSDI with a 2 year wait for Medicare, so they need to fill that gap of insurance. They work 2 full time jobs, one to keep a roof over their heads and insurance for the family, and one caring for a spouse with dementia.
We are losing too many care partners to stress and onset of stress related diseases at a much younger age. We must all remember that some related dementias are not in an aged population and make programs and services available for this community.
N. Satyadev | 01-10-2018
I wanted to inform you of two projects my organization is working on that I believe are relevant to the work of this council.
Firstly, our organization was recently approved to launch our low-cost caregiver respite program in partnership with the USC Leonard Davis School of Gerontology. I plan to keep the council informed of developments with this program, but for now more information about our idea can be found here: http://www.theyouthmovement.org/#/futureOfCare.
Secondly, our organization is leading efforts to pass a California Care Corps Act, building on the framework proposed by Congresswoman Michelle Lujan-Grisham in her National Care Corps Act, which was originally introduced in the 114th Congress and is being reintroduced in the current Congress as a Demo Act. We believe that this legislation is critical to offering care solutions beyond the longstanding IHSS allocations and will help foster an inter-generational culture.
Finally, I want to take a moment to commend the work of Dementia Friendly America as their fast-paced team has been critical to advancing America towards a society in which those diagnosed with dementia feel free to participate in communal activities. Thank you for the time.
C. Johnson | 01-10-2018
My husband was recently diagnosed with Frontal Temporal Dementia/Degeneration. We have gone from Dr to Dr and realize that few know or have even heard of the horrible disease that is robbing the lives of young men and women. Leaving children to grow without a parent. This disease now falls under the umbrella of Alzheimers but it is not Alzheimers.
I fear there are men and women in our prisons that have this also as it causes the afflicted to behave irrationally. Not only my husband but my now deceased brother, who happened to be one of the largest land owners in California, a highly noted architect was locked up in a horrible county psychiatric hospital because he was walking down the highway and became overly excited trying to explain to the officer he was only going home. You see he also had aphasia that is common with this disease. My brother was transported to hospital and detained on a 5150 in this horrible place until I could get to California and get his attorneys to help me get him out. In fact the hearing officer was very surprised that he had $40 million in cash at his disposal as she thought he was homeless! Homeless with a pair of $1200 Italian loafers on..I'm telling you this because we need to educate Doctors, hospitals, judges and everyone on this disease.