A Mini-Review of Strategies for Recruiting Older African Americans to Alzheimer’s Disease Research

Abstract

African Americans experience higher incidence and prevalence of Alzheimer’s disease (AD). Yet, they continue to be underrepresented in AD research, limiting the ability to generalize findings to the increasingly diverse US population. To reduce AD disparities, targeted efforts are needed to increase the representation of African Americans in AD research. This mini review identified evidence-based strategies that increased research participation among older African Americans. Four recruitment strategies emerged from eight published peer-reviewed studies that directly evaluated the effectiveness of strategies aimed at increasing the number of African American participants in Alzheimer’s research. The strategies include community outreach and education, face-to-face discussions, remote access, and referral and partnership with local organizations. Across different locations, these strategies increased the number of African Americans enrolled into AD research, the number of people that signed up to donate their brains for AD research upon death, and the knowledge and perception of AD in the communities. Targeted efforts are effective in increasing AD research participation among older African Americans, especially when combined with approaches that emphasize transparency and mutual trust and involve the community as stakeholders in the research process.

Barriers and solutions to Alzheimer's disease clinical trial participation for Black Americans

“…Second, site selection is also critical, as it makes clinical trials more visible and accessible to diverse populations 38,39,41,47 . Not only do sites need to be in locations that are physically accessible to diverse populations, but they also must be in locations that are trusted by the community 38,48,49 . However, research shows that developing a site in a diverse area cannot be viewed as a stand‐alone solution, and subsequent actions must occur to make the engagement process successful 50,51 …”

“…Partnering with community organizations and patient advocacy groups can not only help companies build key relationships in communities but can allow companies to gain a stronger understanding of community needs. To support community needs and engage with community members impacted by AD, companies might also consider providing support programs and services for the informal caregivers of AD patients 38,48 …”

“…Pharmaceutical companies must consider how to make the clinical trial process most accessible in the context of each unique community setting 36,41–42,44,50 . This could mean increasing site locations to various trusted community settings, devising more flexible site hours, creating mobile sites, offering transportation benefits, or leveraging technology for increased at‐home efficiency 45,48,57 . This also includes considering creative methods for compensation and support, such as offering financial benefits, meals, daycare, or technology to support the clinical trial process 41,42,56 …”

“…38,39,41,47 Not only do sites need to be in locations that are physically accessible to diverse populations, but they also must be in locations that are trusted by the community. 38,48,49 However, research shows that developing a site in a diverse area cannot be viewed as a stand-alone solution, and subsequent actions must occur to make the engagement process successful. 50,51 Third, clinical trial staff teams must reflect the demographics of the populations being served.…”

Recruitment of a Diverse Community-based Older Adult Cohort for a Longitudinal Aging Study

“…[14][15][16] To facilitate inclusion of Black older adults in aging studies, the overarching recommendations in the literature are to be visibly present in the community for extended periods and build trust and partnerships with local leaders, businesses, religious groups, and community members. 8,11,17,18 Additional facilitators include convenient locations and flexible times for study assessments, limiting invasive procedures, offering compensation, employing staff of the same background or communities as the targeted participants, and encouraging study participants to help recruit others. 9,13,18 Since 2006, we have been conducting a longitudinal population study in a cohort of older adults in an underresourced former steel-manufacturing area of southwestern Pennsylvania, United States.…”