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Lack of AAPI participants in Alzheimer's study concerns researchers

Medicare Alzheimer Brain Scans
Posted at 1:38 PM, May 19, 2022
and last updated 2022-05-19 16:46:28-04

Nationwide, one in 12 Asian American and Pacific Islanders 65 years and older have Alzheimer's — a brain disease that progressively destroys memory and other mental functions.

Richard Lui knows firsthand what that's like. He — along with his siblings — took care of their father, Stephen, over the past eight years. He juggled a busy life as a news anchor in New York and flew back and forth to California to see his father.

In the later stages of the disease, Stephen couldn't talk, eat by mouth, hear, or walk. Though he passed away last December, his son continues to educate people about Alzheimer's and highlight the importance of caregivers.

"I think Alzheimer's is a horrible disease that I'm personally mad at," Lui said. "But on the flip side, there's also what we must do as we battle this thing. There is joy despite difficulties."

The disease impact not only the 5 million people with it but also the millions of family members and friends who serve as their unpaid caregivers.

Expert Athene Lee urges Asian Americans and Pacific Islanders to volunteer for clinical trials like the federally-run study AHEAD being conducted to help with treatment research.

"We don't have a cure. We don't have a treatment yet. The only way to find a cure or solution is through clinical trials," Lee said. "Unfortunately, there is a particularly low participation rate from Asian Americans in clinical trials."

AHEAD says AAPIs make up fewer than 5% of all Alzheimer's research participants.

Because Asian Americans are less likely than other racial groups to have Alzheimer's, it's harder for individuals and their families to recognize symptoms and seek care. Experts suggest stigmas and language barriers may also lead to underreporting.

"What's not unique about the AAPI community when it comes to this is nobody talks about it," Lui said. "We sometimes forget that it's just as deadly to us as it is to any other community."

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