June is Alzheimer’s Awareness Month: Working to support those struggling and find a cure
June marks the beginning of summer, a time to enjoy nice weather and spend more time outdoors with friends, family and neighbors. But it also marks Alzheimer’s & Brain Awareness Month, a time that we are reminded of the millions of Americans — including many of those same friends, family and neighbors living with this devastating disease, or serving as a caregiver.
There’s a common misconception that Alzheimer’s is a disease that only affects older Americans. And while 1 in 3 seniors will die with Alzheimer’s or another form of dementia, the truth is that everyone is at risk of developing Alzheimer’s, regardless of age.
In fact, according to the Alzheimer’s Association of the more than 5 million Americans currently living with the disease ¬ nearly a quarter of a million are younger than 60.
Whether an Alzheimer’s diagnosis comes before 60, as it has for many of my constituents, or after, its impact is no less devastating. Unfortunately, it is precisely because the disease is so hard on families and loved ones that many prefer not to talk about it.
Understandable as this may be, however, we cannot help the millions across America living or caring for someone with Alzheimer’s unless we speak up and share our stories. This is why I, and so many others, have been inspired by Bella and Will Doolittle’s award-winning series in the Post Star: Alzheimer’s Chronicles with Bella Doolittle. Will is a journalist whose wife, Bella, was diagnosed with younger onset Alzheimer’s 2 and a half years ago, and they have been chronicling their journey since November of 2017. Will and Bella have proved that sharing your stories with your community and friends may not alleviate the pain and frustration of the disease, but it can be incredibly informative for other families facing similar challenges.
As the U.S. Representative serving the people of New York’s 21st District, I recognize that I have a unique opportunity to help the 400,000 New Yorkers living with Alzheimer’s and their more than 1 million unpaid caregivers — including the 200,000 across America who are living with younger-onset Alzheimer’s.
Specifically, I urge my colleagues in both chambers of Congress to support the passage of the Younger-Onset Alzheimer’s Disease Parity Act, a bipartisan bill I was proud to support as an original cosponsor with Kathleen Rice (D-NY-4) and Pete King (R-NY-2), and David Trone (D-MD-6); and the Senate bill by Sens. Susan Collins (R-Maine), Bob Casey (D-Penn.), Shelley Moore Capito (R-W.Va.) and Doug Jones (D-Ala.).
Endorsed by the Alzheimer’s Association and its advocacy arm, the Alzheimer’s Impact Movement (AIM), this bill would ensure everyone living with younger-onset Alzheimer’s will have access to the same, high-quality care that is currently available to the more than 5 million aged 65 and older who are also living with this devastating disease.
The law would achieve this by amending the Older Americans Act (OAA) to serve individuals aged 60 and younger who are living with youngeronset Alzheimer’s disease or other degenerative diseases.
Until that happens, however, only those over the age of 60 will remain OAA-eligible, meaning the growing number of Americans who are diagnosed with early-onset Alzheimer’s in their 30s, 40s and 50s will not have access to critical OAA services that many of America’s seniors living with the same disease have grown to rely on, such as nutritional programs, in-home services, transportation, legal services, elder-abuse prevention and caregiver support.
Earlier this month, the Senate included key provisions of the Younger-Onset Alzheimer’s Disease Act into its draft reauthorization language for the OAA. This is was an encouraging first step but more work remains.
At the same time, I can also take decisive action against Alzheimer’s by urging my colleagues across the aisle to join me in supporting a $350-million funding increase for Alzheimer’s research at the National Institutes of Health (NIH), where — despite historic increases since the passage of the 2010 National Alzheimer’s Project Act — researchers report current funding falls far short of what’s needed to ensure the disease no longer ranks as the sixth leading cause of death in the U.S.
More research funding also means that researchers will have the tools and resources they need to discover breakthrough treatments and, one day, a cure.
This June, I hope you are able to spend quality time with your friends, family, and neighbors. I also hope you use that time to share your experiences around Alzheimer’s, and join me in supporting the fight to end Alzheimer’s.
U.S. Rep. Elise Stefanik is a Republican who has been representing New York’s 21st Congressional District since 2015.
U.S. Rep. Elise Stefanik