PASCO COUNTY, Fla. -- While research from the CDC projects Alzheimer's cases are expected to double to 3.3% of the U.S. population ages 65 and older by 2060, minority communities expected to see the largest increases make up a small number of trial participants. Dr. Jennifer O'Brien, a researcher on USF's PACT Study, said last month during an Alzheimer's Association webinar that 90% of Alzheimer's trial participants are White.
What You Need To Know
- CDC research shows Alzheimer's cases expected to double among Americans 65+ by 2060
- Black and Hispanic populations projected to see biggest increases
- USF researchers say minority groups traditionally very under-represented in research, including dementia clinical trials
- Taneja College of Pharmacy dean says there's been a marked effort since start of pandemic to build trust among these communities
"In terms of clinical trials, no - the numbers don't surprise me at all," said Dr. Kevin Sneed, dean of the University of South Florida's Taneja College of Pharmacy. "Historically, we've had a very poor immersion rate when it came to African Americans, or just people of color, into clinical trials overall. Very often, you rarely find more than two or three percent of any people of color in those clinical trials unless you have a really targeted approach."
According to a 2018 study from CDC researchers, the Hispanic and Black populations are expected to see the largest increase in Alzheimer's and dementia cases, with projected totals of 3.2 million and 2.2 million cases, respectively. The report Latinos & Alzheimer's Disease: New Numbers Behind the Crisis from the USC Edward R. Roybal Institute on Aging says this represents a potential 832% increase among this group. O'Brien said last month the Black community could see a 193% increase.
"That's alarming. It's absolutely alarming," said Desiree Cheeseman, of Wesley Chapel.
Cheeseman is a Black woman who took part in a study called "Training the Brain" through USF. Despite having a grandfather who may have suffered from dementia, she said concern about the disease wasn't a main motivator for volunteering.
"Honestly, what caught my attention about it was that lessons for music were free," said Cheeseman.
A music lover, Cheeseman said she jumped at the chance to learn how to play the piano at no cost.
"I do know a little bit about how music is healing and helps with our bodies," said Cheeseman. "My son, he has a disability, and music does something for him. It is just absolutely amazing the way that music helps him out, and he even taught himself how to play the drums."
While Cheeseman said she didn't have any reservations about taking part in research, she thinks past violations of trust, like the Tuskegee experiment, may play a role in why members of the Black community don't take part in research more often. She said she saw some of that hesitancy in her late mother, who passed away after a battle with cancer.
"There were some treatments, and she only chose to do one of those treatments," said Cheeseman. "The other treatment that they wanted to give her, she felt that she was being tested or being a guinea pig for the treatment, and she was hesitant to participate in that one."
Cheeseman said the trial she took part in didn't involve any drugs or injections and was more focused on memory skills.
Sneed said since the pandemic, the research community has undertaken more of an effort to build better trust and communication with some of these communities, including through USF's WE-CARE program.
"That will only, in the long term, help them out, or help out people from every community when they have a health ailment," said Sneed.
Sneed said diversity in clinical trials is important because they're involving more and more genomic research that focuses in on a person's genetic foundation and what drives an individual's health.
"So, the more people of diverse backgrounds that we get into clinical research and begin to understand what's happening at the cellular level, the greater chance we will have to really hone in on more effective, personalized treatments in the future," Sneed said.
To learn more about Alzheimer's clinical trials that may be a good fit for you, click here.