I wanted to report on a few things that I heard at last night’s town hall meeting. This meeting provided an opportunity for people affected by Alzheimer’s disease to make statements that will influence the National Alzheimer’s Project Act, or NAPA. This act was signed into law last January, and creates a coordinated national plan to address Alzheimer’s research, clinical care, institutional-, home- and community-based programs and outcomes.
Here are a few of the things that struck me:
- There were lots of people in their 40s and 50s who have been diagnosed with early Alzheimer’s, as well as their family members.
- This group with an early diagnosis spoke very movingly about their struggle just to get diagnosed.
- This group also expressed a lot of dissatisfaction with doctors in general for the lack of information and support provided.
- There were many caregivers present, and they all talked about the burden of being caregivers.
- I had heard this statistic before, but it still knocks me over–40% of caregivers will die before the carereceiver, a direct result of the burden of caregiving