Alzheimer’s doesn’t affect everyone equally. Hispanic and Black Americans are about 1.5 to 2 times more likely than white Americans to develop the disease. But when it comes to clinical trials, these groups are still underrepresented. That’s a problem. Without diversity in research, we can’t be sure how well new diagnostics and treatments work across different populations — or whether they come with different risks.

The good news is that things are changing: When Aduhelm was being tested, fewer than one percent of participants were Black or Hispanic. But in more recent trials for Kisunla and Leqembi — two newer anti-amyloid drugs — researchers made progress. In the Kisunla trial, 8.5 percent of participants were nonwhite. In the Leqembi trial, 4.5 percent were Black, and 22.5 percent were Hispanic.

Here’s how researchers and advocates are continuing to move the needle on diversity in trials:

1. Building trust in underrepresented communities

Trust matters — especially in communities that have been wronged by the medical system in the past. The Tuskegee syphilis study and the story of Henrietta Lacks are just two painful examples that have shaped how many Black Americans view medical research today.

That’s why advocates like Ralph Richards have been working for decades to improve outreach and education around Alzheimer’s in the Black community.

“Researchers and doctors should understand the community that they’re working with — some of their needs and some of their concerns,” Richards told Being Patient. 

2. Promising — and investing in — inclusive recruitment  

Dr. María Aranda, a professor at the University of Southern California, has spent years researching how to improve Latino participation in Alzheimer’s research. One major issue? Trials often set ambitious goals for recruiting diverse participants — but don’t follow through with the funding needed to reach them.

Even if a trial fails to meet its goals, researchers still get reimbursed by funding agencies.

“If we keep refunding individuals that missed the [diversity] target,” Aranda said, “what type of message are we giving?”

3. Making trials more flexible for real people’s lives

Even the best-designed study won’t help if people can’t participate. Dr. David Xavier Marquez, a professor at the University of Illinois Chicago, has seen this firsthand in his research with older Latino adults.

In a study looking at how dance could support brain health, many participants dropped out. He later realized that family responsibilities — like caring for grandkids — and cultural gender roles made it hard for some participants to attend regularly.

“A lot of older Latinos care for their grandkids,” Marquez said. Adjusting the schedule — for example, offering sessions both in the morning and evening — could make a big difference.