Perspective: Enhancing diversity in Alzheimer’s disease research

Alzheimer’s disease is a major public health issue that is compounded with health care disparities. In the United States, underrepresented racial and ethnic groups including Black and Hispanic Americans are disproportionately affected by Alzheimer’s disease. The racial-ethnic differences in Alzheimer’s prevalence cannot be fully explained by genetic risk factors. Rather, the discrepancy is largely driven by a long history of health care disparity, such as a lack of access to quality medical services, as well as disadvantaged social determinants of health-like poverty and exposure to adversity and discrimination among the underserved communities. To break this self-perpetuating cycle, researchers need to address the systemic barriers to the underserved communities.

More than 50 million people worldwide are suffering from Alzheimer’s and related dementias, and this number is estimated to double every 20 years. A special report by the Alzheimer’s Association in 2021 has highlighted the racial and ethnic disparities in Alzheimer’s and dementia care in America and offered some recommendations on the path forward. The report was based on a recent survey of patients with cognitive impairment and their caregivers. One of the key findings is that discrimination is a notable barrier to Alzheimer’s and dementia care — over 50% Black Americans reported experiencing health care discrimination and half or more non-white caregivers faced discrimination while navigating health care systems for their loved ones. Not surprisingly, people of color with cognitive concerns are less likely than their white counterparts to seek medical help and less confident that they will receive quality care. Mistrust in the medical system is likely rooted in personal or witnessed discrimination when seeking health care.

Mistrust is also evident in the belief that medical research is biased against people of color, which is endorsed by a substantial number of non-white respondents (62% Black Americans, 45% Asian Americans, 40% Native Americans, 36% Hispanic Americans) and 31% of White Americans. Furthermore, half of Black Americans doubt that scientific advances in Alzheimer’s treatment will be equally shared across race and ethnicity, and their interests in joining clinical trials is lower than other groups.

Discrimination, mistrust, and lack of engagement in research are unfortunately perpetuating the problem of health care disparity. Without the involvement of diverse communities, research trials are unable to fully validate the efficacy and safety of potential new treatments or generate the necessary knowledge to best implement any new intervention across different racial and ethnic communities.

As highlighted in the 2021 National Institute of Health Alzheimer’s Summit, it is an urgent need to understand the impact of health disparities and to diversify the research workforce and trial recruitment to enable precision medicine for dementia. Researchers need to better prepare ourselves to address implicit biases against people with different skin colors, cultures and values. We need to start building trust with diverse communities, partnering with local stakeholders in the design and conduct of research studies, and being inclusive in trial recruitment. At the Butler Hospital Memory and Aging Program, for example, we have invested in a dedicated outreach team to enhance community-based Alzheimer’s education and engagement over the past few years. We established a community advisory board in 2020 to review our research design and practices. Our commitment to diversity is rewarded with several funded grants to further the effort in community engagement. One project is to set up satellite offices at our local partners to provide on-site education and resources on dementia (Alzheimer’s Disease Neuroimaging Initiative Diversity Taskforce). Another project will establish pop-up cognitive screening at primary care practices in underserved communities (Longitudinal Early-onset Alzheimer’s Disease Study Diversity Recruitment Supplement). We also partnered with the Miriam Hospital on a multi-domain lifestyle intervention study that is committed to recruiting a diverse group of participants representative of the Rhode Island population (U.S. POINTER study). Moreover, we are examining the association of cultural beliefs in aging and subjective reports of cognitive decline in diverse racial and ethnic groups (sponsored by the Department of Psychiatry and Human Behavior Diversity Early Career Faculty Development Award). Through these efforts, we are hopeful to build a trusting relationship with local communities, enhance recruitment of the underrepresented into our existing Alzheimer’s intervention trials, and kick start a repertoire of research to improve the cultural sensitivity of Alzheimer’s screening and diagnostic tools.

Finding a cure for Alzheimer’s disease is imperative. Finding a cure for Alzheimer’s disease that is safe and efficacious across diverse communities is even more critical to the overall well-being of our aging population.

Athene Lee is an assistant professor of psychiatry and human behavior and clinician educator at Brown University. She is affiliated with Brown’s Robert J. and Nancy D. Carney Institute for Brain Science and Butler Hospital.