Despite ongoing efforts to address disparities in Alzheimer’s disease and dementia care, “there is still a lot of work to be done,” says Carl V. Hill, PhD, MPH, chief diversity, equity, and inclusion officer at The Alzheimer’s Association.
A recent report identifies some of the barriers diverse populations are facing in accessing and receiving dementia care.1 Some key findings:
- 36% of Black Americans, 18% of Hispanic Americans, and 19% of Asian Americans believe discrimination would be a barrier to receiving Alzheimer’s care.
- Among Alzheimer’s caregivers, half or more of non-white caregivers say they have faced discrimination when navigating healthcare for their care recipient. The top concern is that providers do not listen to what caregivers are saying because of the caregivers’ race, color, or ethnicity.
“The combination of having populations at higher risk for dementia while receiving less care means poorer outcomes,” Hill notes. “It’s a big concern and something all healthcare stakeholders need to work to improve.”
Most current participants in Alzheimer’s research and clinical trials are white. Blacks are disproportionately more likely to have Alzheimer’s but are more reluctant to participate in clinical trial research.1 Researchers found 67% of Blacks are interested in trial participation vs. 82% of whites.
The Alzheimer’s Association is working with the American College of Radiology to recruit participants for the New IDEAS study.2 Investigators are examining if using a brain amyloid PET scan can help inform an individual’s memory care plan and improve their health outcomes. There will be 7,000 participants, including 2,000 Hispanics/Latinos and 2,000 Blacks, according to Hill.
Without appropriate participation from Asian, Native American, Black, and Hispanic communities, it is difficult to understand how ethnic and racial differences may affect the safety and efficacy of potential new treatments. “If we don’t investigate the effects of Alzheimer's drugs in all groups, we will only learn whether they benefit those who enroll in the trials — namely, white people,” says John C. Morris, MD, professor of neurology at Washington University in St. Louis.
To understand how a drug may produce benefits (or cause side effects) in all patients, researchers must study all groups. “The clinical trial cohorts have not been very diverse — nor, frankly, have the cohorts in the vast majority of observational research in Alzheimer’s disease,” Morris argues.
Researchers have relied on the willingness of people to volunteer for these studies. The most likely to volunteer are white people. “As an entire field, we want to learn about Alzheimer’s disease in all people. We have to be more welcoming to all people,” Morris says.
That means researchers cannot just wait for volunteers to call. “Instead, we must engage with people who are underrepresented in research and find a way to increase their participation rates,” Morris offers.
In 2000, shortly after Morris became the director of Washington University’s Knight Alzheimer Disease Research Center (ADRC), he noted research volunteers were about 90% white. Morris turned to community leaders to learn more about how to increase participation in the African American community of St. Louis. One leader agreed to volunteer as a research participant, but privately told Morris that it bothered him there was not one person of color on the entire research team.
Morris and the Knight ADRC took this to heart and actively worked to become more diverse. About 18% are now African American.
“We found that the advice and counsel of the Knight ADRC’s African American Advisory Board were instrumental in helping us become more welcoming,” Morris says.
Another obstacle to research participation is the fact many African Americans distrust academic medical centers, knowing there is a history of discrimination. Many are reluctant to agree to take an experimental drug or undergo invasive diagnostic tests. “A great advantage would be if we had more diverse research teams,” Morris says. “If it takes extra work, or takes more resources or time, we are obligated to do that so we understand this illness in all groups.”
REFERENCES
- Alzheimer’s Association. Special report: Race, ethnicity and Alzheimer’s in America. 2021.
- American College of Radiology. New IDEAS. ACR Bulletin. Feb. 26, 2021.
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