Raising Awareness of Alzheimer’s Disease and Dementia in Native Americans in North Carolina

To the Editor—Recent approval of a disease-modifying therapy for Alzheimer’s disease (AD) raises public hopes that other therapeutics may be on the horizon to treat this devastating condition affecting nearly 6 million Americans, including over 180,000 North Carolinians [1]. We are encouraged because at long last we have a drug that can alter the underlying pathology of the illness; however, there are many unanswered questions, particularly when considering whether these treatments will have a meaningful impact on groups underrepresented in clinical trials.

Clinical trial populations are by design comprised of individuals without significant medical comorbidities. Participants are typically of higher socioeconomic status and predominantly non-Hispanic Whites (NHW). Heterogeneity in treatment response occurs across many therapeutic areas depending on an individual’s underlying physiology, medical comorbidities, lifestyle factors, and possibly genetics [2, 3]. The lack of diversity in AD trial populations means that comparatively little is known about drug efficacy in underrepresented groups. This situation is of particular concern for American Indian populations already facing health disparities and a higher prevalence of conditions that make them more vulnerable to cognitive disorders of later adulthood [4]. Compared to their NHW counterparts, American Indians have disproportionately high rates of cardiovascular disease, diabetes, hypertension, and obesity [5], all of which are risk factors for stroke and late-life cognitive disorders [6].

Work across North Carolina is beginning to increase awareness of AD and related disorders in American Indian communities [7–9]. The North Carolina Registry for Brain Health is a state-sponsored collaborative effort across five academic partners (Duke University, Wake Forest University, UNC-Chapel Hill, NC A&T State University, and East Carolina University) to increase awareness and access to brain health research in underrepresented communities. Registry participants receive information on new developments related to improving brain health, resources for those living with dementias, and opportunities to get involved in research. Signing up for the registry does not commit one to a study, but instead provides a way to get regular updates about brain health research in North Carolina and ways to get involved.

We encourage all adults in North Carolina to visit the registry site and consider joining (ncbrainhealth.org). Our message is simple: By being informed and getting involved in brain health research, we can increase the representativeness of studies to better reflect the communities most affected by dementias and ensure that new therapies are better designed to meet the needs of all.

• © 2022 by the North Carolina Institute of Medicine and The Duke Endowment. All rights reserved.