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Researchers and advocates urge focus on Black caregivers and Black men’s caregiving needs and research inclusion
Summary
Panelists told the Senate study committee that Black Americans face higher dementia prevalence and caregiver burden, that Black caregivers are more likely to experience financial and emotional strain, and that Black men are underrepresented in dementia research and support programs.
Researchers and advocates urged the Senate study committee to address racial disparities in dementia prevalence, caregiver burden and research participation.
Dr. Karen Moss (Ohio State University) and Dr. Robert Turner (George Washington University/Duke affiliate) described epidemiologic evidence that dementia prevalence is higher in Black and Latino populations and emphasized that rural and minority communities bear a disproportionate burden. Dr. Moss noted that many Black caregivers — including Black men — are underrepresented in research and that the numbers in public datasets are likely undercounts because of reporting and outreach gaps.
Dr. Robert Turner described findings from his research and outreach work showing that Black male caregivers report higher rates of stress, depression and financial burden and are less likely than other groups to be enrolled in clinical research. He said cultural norms, historic underinclusion and the lack of trusted outreach account for part of the low participation rates, but that targeted, community‑based approaches (including faith‑based outreach and events that meet men where they are) substantially increase engagement.
Beverly Berry of the Alzheimer’s Association highlighted the association’s 2021 report on race and dementia and said African Americans report higher perceived discrimination in health care and a belief that medical research is biased against people of color. Panelists recommended culturally tailored outreach, inclusion of faith and community leaders, recruitment of diverse investigators, and more community‑based trials so that interventions and services reflect the needs of the populations they will serve.
Committee members acknowledged the gaps and asked researchers and advocates to supply evidence‑based outreach models and metrics the committee could use to evaluate proposed investments.
