To the editor:
In April of 2018, my 62-year-old sister was diagnosed with younger-onset Alzheimer’s disease. Sadly, my family is very familiar with Alzheimer’s.
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Between 2000, when my father was diagnosed with the disease, and 2017, when my mother passed with the disease, my family was deeply involved with their care, with learning about the disease, with learning how best to take care of our parents and how to take care of ourselves as their family and caregivers. We know too well that Alzheimer’s is not just an “old people’s” disease.
An estimated 200,000 Americans under the age of 65 are currently living with younger-onset Alzheimer’s disease. People living with younger-onset face unique challenges when it comes to family, work, and finances.
The stigma associated with younger-onset Alzheimer’s can also have a significant impact on their well-being and quality of life. However, because of their young age these individuals are not eligible for support and service programs available to older Americans.
The Alzheimer’s Impact Movement (AIM) is proud to work with bipartisan leaders in Congress to advance the Younger-Onset Alzheimer’s Disease Act of 2019 (H.R. 1903/S. 901). This important bill would allow individuals living with dementia under the age of 60 to access supports and services from programs under the Older Americans Act (OAA).
Those include home- and community-based programs and supports, such as nutritional services, transportation, legal services, and respite care through the National Family Caregiver Support program.
Additionally, this legislation requires that the assistant secretary for aging submit a report to Congress about Alzheimer’s-related programs and program performance, and any gaps in the programs for the needs of individuals living with younger-onset Alzheimer’s disease.
My family knows on a very personal level that each of these services and programs are critical to the support and care of people living with younger-onset Alzheimer’s, for both the person experiencing the disease and their families.
We salute U.S. Rep. Jim Himes for cosponsoring the Younger-Onset Alzheimer’s Disease Act of 2019, and for his ongoing support for all families touched by this devastating disease.
Robin Roscillo
Darien