Black and Hispanic Americans are especially vulnerable to Alzheimer’s. 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 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 is not only 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 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.