Introduction: Alzheimer’s disease and related dementias (ADRD) disproportionately impact racial
and ethnic minority and socioeconomically disadvantaged adults. Yet, these populations are significantly
underrepresented in research.
Methods: We systematically reviewed the literature for published reports describing recruitment and
retention of individuals from underrepresented backgrounds in ADRD research or underrepresented
participants’ perspectives regarding ADRD research participation. Relevant evidence was synthesized
and evaluated for quality.
Results: We identified 22 eligible studies. Seven studies focused on recruitment/retention approaches,
all of which included multifaceted efforts and at least one community outreach component.
There was considerable heterogeneity in approaches used, specific activities and strategies, outcome
measurement, and conclusions regarding effectiveness. Despite limited use of prospective evaluation
strategies, most authors reported improvements in diverse representation in ADRD cohorts. Studies
evaluating participant views focused largely on predetermined explanations of participation
including attitudes, barriers/facilitators, education, trust, and religiosity. Across all studies, the
strength of evidence was low.
Discussion: Overall, the quantity and quality of available evidence to inform best practices in recruitment,
retention, and inclusion of underrepresented populations in ADRD research are low. Further
efforts to systematically evaluate the success of existing and emergent approaches will require
improved methodological standards and uniform measures for evaluating recruitment, participation,
and inclusivity