Scientists Reach Out To Minority Communities To Diversify Alzheimer's Studies

Dec 17, 2019
Originally published on December 17, 2019 7:00 pm

Black and Hispanic Americans are especially vulnerable to Alzheimer's disease. Yet they're often underrepresented in scientific studies of the disease.

So on a cool Sunday morning in Cleveland, two research associates from Case Western Reserve University's School of Medicine have set up an information table at a fundraising walk organized by the local chapter of the Alzheimer's Association.

"We are looking for families, minorities and people with early onset," Leah Cummings tells passersby who are waiting for the walk to begin.

"We are looking for people to help us figure out the genetic link to memory loss," says Sara Kennedy, adding that understanding the genetics of the disease could lead to treatments.

About half of Cleveland's population is African American, a group that is twice as likely as white Americans to develop Alzheimer's. And the Walk to End Alzheimer's event has attracted a diverse crowd of about 4,000 to the Cleveland Metroparks Zoo.

But the genetics study is still a tough sell.

"So far no one has signed up," Cummings says. "But we're hoping that we'll get a few names today."

Before the walk starts, the crowd gets a pep talk from state Rep. Stephanie Howse, a Democrat who is African American and the primary caregiver for her mother, who has dementia.

"Some days have been hard," Howse tells the crowd. "But we've been having a lot of great days, a lot of good memories."

Case Western's presence here is part of a national effort funded by the National Institute on Aging to expand and diversify participation in Alzheimer's studies.

"Historically we have not been looking at a lot of the diverse populations," says Jonathan Haines, a professor at Case Western who is leading the effort to diversify genetic studies.

Previous research has found "some evidence" that Alzheimer's not only is more likely to strike black and Hispanic people, Haines says, but also may progress differently. "There's a lot that we still need to learn," he says.

So Haines and other researchers are trying to get that message to black and Hispanic communities.

"We actually need to have thousands and thousands of individuals participate in these studies to really understand the genetics of Alzheimer's disease," he says.

Case Western is trying to minimize the burden on participants by allowing them to provide blood samples and take medical tests in their own homes.

But in minority communities, Haines says, it's about more than convenience.

"One of the concerns that we often deal with is an issue of trust," he says. That includes trust in doctors and medical institutions and in the good intentions of researchers, he says.

That sort of trust requires building a relationship between the research community and minority communities, Haines says. And showing up at an Alzheimer's walk is one way to start.

The comments of several African Americans at the walk suggest Case Western's efforts may be paying off.

"I've been up since 2:30 this morning, and I ran over to make sure I made the event," says Robert Smith, whose aunt has Alzheimer's.

Smith is no fan of doctor visits but says he'd sign up for an Alzheimer's study.

"Yeah, absolutely," he says. "If it may help find a cure, I'm all for it."

That sentiment is echoed by Rosita Brantley, who has a grandfather who died with Alzheimer's and works in the dementia unit of a retirement home.

"I would want to know if it's genetic, you know, if it's in my genes," she says. "So, yeah, I would do it if I was asked."

Recruiters from Case Western say they signed up four people before the event was over.

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ARI SHAPIRO, HOST:

Black and Hispanic Americans are especially vulnerable to Alzheimer's, but these groups are often underrepresented in scientific studies of the disease. NPR's Jon Hamilton says scientists are trying new ways to diversify their research.

JON HAMILTON, BYLINE: Scientists often look for study volunteers at clinics or medical centers. But a team from Case Western Reserve University in Cleveland is trying something different. On this Sunday morning, they've come to a fundraising walk organized by the local chapter of the Alzheimer's Association.

(SOUNDBITE OF ARCHIVED RECORDING)

STEPHANIE HOWSE: Well, good morning, everybody. How's everybody doing?

HAMILTON: Before the walk begins, the crowd gets a pep talk from Representative Stephanie Howes. She's African American. She also takes care of her mother, who has dementia.

(SOUNDBITE OF ARCHIVED RECORDING)

HOWSE: Some days have been hard, right? Yeah, right? But there are - we've been having a lot of great days, a lot of good memories.

HAMILTON: A diverse crowd of about 4,000 people have shown up, and the ones who stop by the vendor tables are likely to meet Leah Cummings, one of two research associates from the medical school at Case Western.

(SOUNDBITE OF ARCHIVED RECORDING)

LEAH CUMMINGS: So we're looking for families, minorities and people with early-onset. It's a genetic study.

HAMILTON: Cummings explains that the goal is to find genes that contribute to memory loss, especially genes that might be different in African Americans and Hispanics.

(SOUNDBITE OF ARCHIVED RECORDING)

CUMMINGS: And this gives you some more information about our study.

UNIDENTIFIED PERSON #1: OK.

CUMMINGS: It gives you all the details that you're going to need.

UNIDENTIFIED PERSON #1: OK.

CUMMINGS: And then feel free to take anything else that you - OK.

UNIDENTIFIED PERSON #1: All right. Thank you.

HAMILTON: Cummings says despite the big crowd, the study is a tough sell.

CUMMINGS: So far, no one has signed up. But we're hoping that we'll get a few names today.

HAMILTON: The recruiting effort in Cleveland is part of a nationwide strategy funded by the National Institute on Aging. Jonathan Haines, a professor at Case Western, says diversifying research studies is the best way to answer some outstanding questions about race, ethnicity and Alzheimer's.

JONATHAN HAINES: Historically, we have not been looking at a lot of the diverse populations. And so there's some evidence that it's different in different populations, but there's a lot that we still need to learn.

HAMILTON: So Haines and other researchers are asking minority communities for help.

HAINES: We actually need to have thousands and thousands of individuals participate in these studies to really understand the genetics of Alzheimer's disease.

HAMILTON: The university is trying to make it easy to participate. People who sign up can even ask to have a researcher visit their home to collect blood samples and health information. But Haines says in minority communities, it's about more than convenience.

HAINES: One of the concerns that we often deal with is an issue of trust.

HAMILTON: Trust in doctors and medical institutions and the good intentions of researchers - that often requires building a relationship. And Haines says talking to people at an Alzheimer's walk is one way to start.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON #2: In five, four, three, two, one - let's walk.

(SOUNDBITE OF AMERICAN AUTHORS SONG, "BEST DAY OF MY LIFE")

HAMILTON: Today's walkers include many African Americans. One is Robert Smith, whose aunt has Alzheimer's.

ROBERT SMITH: I've been up since 2:30 this morning, and I ran over here to make sure I made the event.

HAMILTON: Smith says he's no fan of doctor visits but would consider signing up for an Alzheimer's study.

SMITH: Yeah, absolutely. If it may help find a cure, I'm all for it.

HAMILTON: Rosita Brantley has a grandfather who died with Alzheimer's. And Brantley works in the dementia unit of a retirement home, so I ask if she's interested in joining the genetic study at Case Western.

ROSITA BRANTLEY: Well, yes, because I would want to know if it's genetic, you know, if it's in my genes, you know, will it be passed down? Yeah, I would do it if I was asked. Yeah.

HAMILTON: Case Western researchers were able to sign up four people for their study before the walk was over.

Jon Hamilton, NPR News. Transcript provided by NPR, Copyright NPR.