ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
Public Comments on Advisory Council Meeting, April 2016
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.
M. Sharp | 04-20-2016
Hello. My name is Matt Sharp, Program Manager for The Association for Frontotemporal Degeneration (AFTD). Thank you once again for the opportunity to comment on behalf of our 'related dementia" FTD. I was lucky to be at the 2016 Alzheimer's Disease-Related Dementia Summit in Bethesda last month and haven't stopped thinking about everything that happened during the two-day event.
AFTD Director Susan Dickinson was honored to co-chair a new session on Non-Governmental Organizations and we are grateful for the opportunity to help develop recommendations on how NGO's can facilitate and promote bio-medical research and build stronger partnerships between the academic researchers working on the "related-dementias", the federal institutes providing the funding.
One of the more surprising things I heard at the summit was that most people who are diagnosed will have a mix of different pathological changes in their brain and it is usually possible to find signs of multiple diseases when looked for by autopsy. So even though people are diagnosed as having a single disease, dementia is actually much more complicated and messy and until biomarkers are found for all the pathologies associated with dementia researchers need to acknowledge that the names we currently use for diagnoses don't accurately reflect the complex biology of these diseases.
Along those same lines, we are very much looking forward to the work of dementia nomenclature working group as recommended at the 2016 summit. The task of developing a coherent and consistent nomenclature and clarifying the language used by all stakeholders involved with dementia in all its medical, social and cultural complexity is daunting to say the least but AFTD is eager to help however we can.
The progress being made in research on the related dementias, and especially FTD, is truly exciting. The 2016 ADRD summit made it clear that this research is necessary to treat, cure and ultimately prevent not only the related dementias, but Alzheimer's disease as well.
E. Sokol | 04-20-2016
M. Janicki | 04-20-2016
I am Matthew Janicki. Along with my colleague, Seth Keller, we are the co-chairs of the National Task Group. Our Group's goal is to work with the Advisory Council and the National Plan to Address Alzheimer's Disease to promote the inclusion of the concerns and needs of adults with intellectual disabilities affected by dementia, as well as their families and caregivers. We have been in place since the passage of the National Alzheimer's Project Act and the inception of the Council. Today, on behalf of our Group, I would like to inform the Council of what our Group has been doing to aid in carrying out aspects of the National Plan on behalf of people with intellectual disability.
i. Larson, S.A., Hallas-Muchow, L., Aiken, F., Taylor, B., Pettingell, S., Hewitt, A., Sowers, M., & Fay, M.L. (2016). In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through 2013. Minneapolis, MN: University of Minnesota, Research and Training Center on Community Living.
ii. Nocon, M. (2016). Addressing the need to accommodate delayed egress via IPPs. Spring Valley, CA: Noah Homes.
iii. US DHHS. (2014). National Plan to Address Alzheimer's Disease: 2014 Update. Washington, DC: Author
v. Larson et al. Ibid.
vi. Jokinen, J. Janicki, M.P., Keller, S.M., McCallion, P., Force, L.T. and the National Task Group on Intellectual Disabilities and Dementia Practices. (2013). Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia. Journal of Policy and Practice in Intellectual Disabilities, 10(1), 1-28.
vii. National Task Group on Intellectual Disabilities and Dementia Practice. (2012). 'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports. http://www.aadmd.org/ntg/thinker
viii. http://www.alzscot.org/campaigning/international_activity (Glasgow Declaration)
ix. National Task Group on Intellectual Disabilities and Dementia Practices. Ibid.
M. Ellenbogen | 04-15-2016
I serve on many boards. Unfortunately, though, I miss a lot of what is being said when people are speaking. It's hard to admit, but that is the truth. I have spoken to others who have dementia and they tell me the same story. Because of that reason alone, I believe it is unjust to have only one person living with the disease on any board. It not only puts them in an unfair position but it will surely contribute to not getting the proper feedback, which, I assume, is why you ask us to serve on the committee in the first place. While I have recommended this before, I strongly recommend you add at least another person living with dementia to the council. After all, you have two representatives for caregivers, although I am not sure why you would think they need a larger presence than those you are trying to help. They did hear my request at the World Dementia Council. And if you are looking to follow the best model, just look at Dementia Action Alliance, they have 9 diverse individuals living with dementia. Since I believe you are supposed to be the leader in this mission shouldn't you start by setting the right example for others to follow.
On another note, and sounding like a broken record, it would sure be great if I could speak on the phone or internet. Instead, I need to work countless hours with the help of others, to create my comments as my spelling is no longer readable. So you can fix the track before the next meeting.
P. Shenian | 04-13-2016
I am Pop Shenian. I am a Board member of The Association of Frontotemporal Degeneration (AFTD), based in Radnor, Pennsylvania.
FTD is early form dementia affecting language behavior and speech
I am proud to announce annual caregiver conference and board meeting will be held in Minneapolis in May
Our keynote speakers will be Brad Bove and David Knopman, who are Ron Peterson's associates
My family is fully vested with AFTD. My dad had ftd, and my mom was a founding board member
I was also a caregiver
I was fortunate to be close friends with the late Senator Arlen Specter who helped me early on with my advocacy work in Washington.
I am here today to advocate on behalf of AFTD but I speak on behalf of all families battling AA and related dementias.
There is power in numbers and I am optimistic with the help of the Council and HHS that we will find treatments and get to a cure
Thanks to the council for all your hard work.