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Review
. 2025 Jul;21(7):e70459.
doi: 10.1002/alz.70459.

Community engagement, recruitment, and retention of minoritized participants in Alzheimer's disease and related dementia research: A systematic review of disparities

Araya Dimtsu Assfaw  1 , Ganesh M Babulal  1   2   3 , Joyce Balls-Berry  1 , Jessica Mozersky  1   4 , Krista Moulder  1 , John C Morris  1
Affiliations
Review

Community engagement, recruitment, and retention of minoritized participants in Alzheimer's disease and related dementia research: A systematic review of disparities

Araya Dimtsu Assfaw et al. Alzheimers Dement. 2025 Jul.

Abstract

Introduction: Ethnoracial groups face the highest risk for Alzheimer's disease and related dementias (ADRD) but remain underrepresented in research, exacerbating health disparities. Understanding barriers and effective recruitment strategies is critical for fostering inclusivity. The aim of this study was to synthesize evidence on strategies to engage, recruit, and retain historically minoritized groups in ADRD research.

Methods: A systematic review was conducted using PubMed-MEDLINE, EMBASE, SCOPUS, and WEB OF SCIENCE. Studies focusing on ADRD research recruitment and retention among minoritized populations in the United States were included.

Results: Thirty-three studies identified key barriers, including mistrust, logistical challenges, and low awareness. Effective strategies involved long-term community engagement, culturally tailored education, participatory methods, and logistical support.

Discussion: Addressing systemic barriers through culturally competent strategies, digital tools, and community partnerships is essential for equitable research participation. Researchers and policy-makers must prioritize inclusive approaches to enhance representation and improve ADRD outcomes.

Highlights: The study examined strategies for engaging, recruiting, and retaining historically underrepresented ethnoracial groups in ADRD. Successful engagement strategies encompass building trust through long-term community involvement, utilizing culturally tailored educational materials, and forming partnerships with community-based organizations. The study advocates for enhancing cultural competency, leveraging accessible digital tools, fostering community partnerships, addressing logistical barriers, and ensuring diverse representation in biomarker research.

Keywords: Alzheimer's disease and related dementias (ADRD); community engagement; diversity in research participation; equitable research; health disparities; recruitment and retention strategies; underrepresented populations.

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Conflict of interest statement

The authors declare no conflicts of interest. Author disclosures will be avilable in the Supporting information.

Figures

FIGURE 1
FIGURE 1
PRISMA diagram of the search strategy. PRISMA< Preferred Reporting Items for Systematic Reviews and Meta‐Analyses.
See this image and copyright information in PMC

References

    1. GBD 2019 Dementia Forecasting Collaborators . Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: an analysis for the Global Burden of Disease Study 2019. Lancet Public Health. 2022;7(2):e105‐e125. doi: 10.1016/S2468-2667(21)00249-8 - DOI - PMC - PubMed
    1. 2024 Alzheimer's disease facts and figures. Alzheimers Dement. 2024;20(5):3708‐3821. doi: 10.1002/alz.13809 - DOI - PMC - PubMed
    1. Matthews KA, Xu W, Gaglioti AH, et al. Racial and ethnic estimates of Alzheimer's disease and related dementias in the United States (2015‐2060) in adults aged ≥65 years. Alzheimers Dement. 2019;15(1):17‐24. doi: 10.1016/j.jalz.2018.06.3063 - DOI - PMC - PubMed
    1. Lennon JC, Aita SL, Bene VAD, et al. Black and White individuals differ in dementia prevalence, risk factors, and symptomatic presentation. Alzheimers Dement. 2022;18(8):1461‐1471. doi: 10.1002/alz.12509 - DOI - PMC - PubMed
    1. 2021 Alzheimer's disease facts and figures. Alzheimers Dement. 2021;17(3):327‐406. doi: 10.1002/alz.12328 - DOI - PubMed