Congress need to renew Alzheimer’s research legislation

I am 56 years young, and I have Alzheimer’s.

Alzheimer’s is a disease that is largely misunderstood — many people think of it as something that only affects the elderly or that it is a normal part of aging. The prevalence of this disease is growing, unfortunately. But being common hasn’t made it normal. And being young doesn’t make you immune.

My wife, 52, who is already a caregiver to our pre-teen son, will eventually be a caregiver to me, too, as my disease progresses. She’s not alone. Across California there are nearly 1.4 million family and friends providing more than 1.8 billion hours of unpaid care annually to loved ones living with Alzheimer’s, a generosity valued at more than $44 billion, according to the Alzheimer’s Association.

Despite its prevalence and the sheer number of people it touches, in our experience there are limited resources and support for caregivers faced with managing Alzheimer’s — and even fewer for those experiencing Alzheimer’s at a young age, wondering how to explain or support our children through this diagnosis. There are no resources for teachers or counselors, because supportive care for young children whose parents are living with Alzheimer’s isn’t widely recognized.

Of all the misconceptions about Alzheimer’s, the one most frustrating to me is when people learn of my diagnosis: They assume I’m no longer capable of carrying on conversations or making decisions. Because so little is understood about the disease, people aren’t sure how to interact with me. The result is often experiencing a frustrating lack of connection with other people, which can compound our Alzheimer’s diagnosis with depression.

But despite the challenges, I am hopeful about the important research advancements that have been made. Most significant is the opportunity to consider newly developed treatments — the first ever shown to slow the progression of Alzheimer’s — approved by the FDA last year.

That opportunity is possible because of increased federal investments in Alzheimer’s research over the last decade. This significant effort to address Alzheimer’s and other dementia, a result of Congress passing the bipartisan National Alzheimer’s Project Act, has changed the path of Alzheimer’s research. Equally instrumental is the bipartisan Alzheimer’s Accountability Act that has ensured that Congress hears directly from scientists at the NIH about the amount of resources needed to address the Alzheimer’s public health crisis. 

Both of these laws have changed the trajectory of Alzheimer’s for those living with the disease and their caregivers. And both of these laws are set to expire soon.

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