Alzheimer’s and other dementia disproportionately affect older Black and Hispanic Americans compared to older Whites, according to the Alzheimer’s Association.
Dr. Carl V. Hill, chief diversity, equity, and inclusion officer for the Alzheimer’s Association, discussed with the St. Louis American how recent research ties poor social determinants of health and health equity issues to disproportionate rates of dementia in minority populations.
“Socio-economic status reflects a family’s access to economic resources and social position,” he said. “Socio-economic status has been linked to both physical and psychological health, but little has been known about how this status in early to mid-life affects the brain.”
New research from the Alzheimer’s Association shows lower-quality neighborhood resources and difficulty paying for basic needs were associated with lower scores on cognitive tests among Black and Latino individuals.
“The takeaway here is that the new research adds to the point that socio-economic status impacts health, which emphasizes the importance of public health and policy making that impacts socio-economic conditions,” he said.
“We focus a lot on getting people to change their behaviors, but we have to think critically about getting them resources in a sustained way to make sure they have access to quality foods, opportunities to engage in physical activity, opportunities to manage their stressors, and so on.”
According to Hill, additional health equity issues tied to Alzheimer’s include dementia-related health disparities and minority participation in clinical trials.
“We know that African Americans are two times more likely to have Alzheimer’s or another dementia in addition to Hispanics and Latinos being one and a half more likely to have Alzheimer’s or another dementia when both are compared to white Americans,” Dr. Hill said. “These disparities show how these communities are disproportionately affected, and from an equity perspective, we have to do better with representation in clinical trials in Alzheimer’s and other dementia-related trials because less than 10% of clinical trial participants come from an African American, Hispanic, or Latino community.”
Dr. Hill attributed the lack of minority participation and representation in dementia-related clinical trials to previous unethical medical trials including the landmark Tuskegee Experiment.
“We know we have to do more to get beyond the stigma around participating in clinical trials, which bioethics atrocities created around African American, Hispanic, Latino, Native populations as well in getting involved clinical trials,” he said.
Much of the Alzheimer’s research to date has not included enough Black, Hispanic, Asian or Native Americans to be representative of the U.S. population.
“Some research says that some communities are not being asked to participate in these trials, which means the researchers are not equipped in either the expertise or the resources to do a good job of recruitment; recruitment requires community engagement,” Dr. Hill said.
The underrepresentation of these populations not only hinders the ability of researchers to understand these health disparities, but it also restricts their knowledge of how an approved therapy or diagnostic may affect the populations most likely to need the treatment.
Dr. Hill went on to say researchers can successfully gather more diverse trial participants by partnering with community organizations to build trust in communities around the country.
As a result of his leadership, the Association has broadened its reach to previously underserved communities with partners such as the Thurgood Marshall College Fund, National Indian Council on Aging, National Black Nurses Association, National Association of Hispanic Nurses, African Methodist Episcopal Church, and the Buddhist Tzu Chi Foundation.
Dr. Hill’s role as chief diversity, equity and inclusion officer for the Alzheimer’s Association is responsible for developing cross-functional partnerships with organizations to advance diversity, equity, and inclusion.
The bipartisan Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act, looks to increase the participation of underrepresented populations in Alzheimer’s and other dementia clinical trials by expanding education and outreach to these populations, encouraging the diversity of clinical trial staff, and reducing participation burden, among other priorities.