ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
Public Comments on Advisory Council Meeting, October 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.
The morning sessions of the October 19 meeting were streamed live as a HHS Facebook Event. Below are the comments left there during the stream.
Can you start to livecast ACIP meetings as well? Please start paying attention to the corruption there.
Drain the Swamp in Massachusetts. State workers who abuse. Aide and Abet. Who forget their verbal order to leave people alone.
I stopped by to provide an update on our family's journey with dementia. As you may remember, my husband and I have 3-out-of-4 parents impacted by the disease. My father-in-law has Alzheimer's. It's progressing. My husband and I were convinced that we had the right tools to find caregiving support for my mother-in-law. After all, we had all the lessons-learned from supporting both of my parents. We knew where to start, who to call, what to say, the right buttons to push. It would be different this time.
Sadly, that is not the case. In fact, the only support we've received is from the VA. My mother-in-law receives 10 hours of respite/wk from a VA caregiver. This began about 4 months ago. The downside: it took almost 2 years of pleading with the VA to put this resource in place. Frankly, this is disgraceful.
Low income seniors with Alzheimer's and their caregivers are falling through the cracks. The safety net has failed miserably. Families like ours want to keep their loved ones at home. But there is no infrastructure that allows us to do this. Medicare does not cover anything related to Alzheimer's care. As we found out with my parents, the only recourse we have is navigating the complicated Medicaid eligibility process and placing our loved ones in longterm care. Then you discover that finding an available bed is also a massive undertaking that involves long wait lists. When a bed finally becomes available, you find out that nursing homes have a revolving door of staff members who are not trained in dementia care.
The amount of stress this is putting on families is impossible to quantify.
We need a sea change in Alzheimer's care and we need to create a roadmap for home and community-based services to get us there. This is an epidemic and the response from the VA, CMS, and all federal agencies must reflect that. Thank you.
My name is Matthew Sharp. I am the Program Manager for The Association for Frontotemporal Degeneration and I appreciate this opportunity to offer comments from AFTD.
I primarily want to thank the Long Term Services and Supports sub-committee for the planning the sessions this morning. Accessing quality care remains a huge challenge for people living with FTD and their families and care partners and I am glad to see the LTSS sub-committee give such attention to this subject.
At the root of the problem of finding quality care for people with FTD is the fact that it is a rare disease that most healthcare professionals never encounter. This scarcity of experienced professionals is compounded by the unique presentations of the disease. Most of the time FTD doesn't look like dementia. It looks too young, or too healthy especially to healthcare providers who are accustomed to serving people in their 70s or 80s and who equate dementia with memory loss. A person in their 50's who just bought a new car just looks successful, or at worst like they are having a mid-life crisis. The fact that they used their children's college savings is typically hidden, but even when discovered; it is not usually seen as a sign of dementia.
It takes someone with special experience to recognize personality and behavior changes as symptoms of a neurological disease. But more to the point, how do you treat these symptoms once they are recognized. I do not know, but I believe the first step is to have discussions and presentations such as we have seen this morning and I thank the Long-term Services and Supports committee for taking on this subject.
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