Examining factors that influence African‐Americans and Blacks’ participation in Alzheimer’s biomarker research

Abstract

AbstractBackgroundAfrican Americans and Blacks in the US are less likely to engage in Alzheimer’s disease (AD) research studies, despite having two to three times higher risks of developing AD compared to Whites. Understanding the various factors influencing African Americans and Blacks’ participation in AD research, especially studies that involve biomarkers, is important for increasing equity in AD research, and advancing AD diagnosis and treatment for diverse populations.MethodStudy participants included 164 community‐dwelling African Americans and Blacks in the Indianapolis metropolitan area, aged 55 and older, and who had no prior participation in AD research. Participants were administered a 24‐item survey to examine their knowledge of AD, willingness to participate in biomarker research procedures (genetic testing, brain MRI, and PET Scan), and views of incentives for participation.ResultMost participants were female (68%) and had less than 16 years of education (71%). About half were 65 years old or older. Most participants (84%) reported that they did not know what caused AD or how to manage it, and only 43% were aware that “Black people are at higher risk of developing dementia, including Alzheimer’s disease, compared to Whites.” Most participants were willing to do or consider participating in biomarker procedures common in AD research studies (90% genetic testing, 86% MRI, and 82% PET scan).The majority (85%) were agreeable to future contact for research participation. Most participants viewed return of test results, particularly from cognitive testing (81%) and brain scans (82%), and information about brain health (72%) as incentives to participate in research.ConclusionOur findings revealed that older African‐American and Black participants are willing to engage in Alzheimer’s disease biomarker research study procedures. They also viewed knowledge (in the form of return of results and information about brain health) as a major incentive for participation. Our findings suggest that future outreach and recruitment strategies tailored towards African Americans and Blacks may benefit from focusing on the value of knowledge these studies can provide to participants. We also identified opportunities to educate African Americans and Blacks about their increased risk for AD and the causes and prevention of AD.