Strategies for the Recruitment and Retention of Racial/Ethnic Minorities in Alzheimer Disease and Dementia Clinical Research

Author(s): Roger Wong*, Takashi Amano, Shih-Yin Lin, Yuanjin Zhou, Nancy Morrow-Howell

Journal Name: Current Alzheimer Research

Volume 16 , Issue 5 , 2019

  Journal Home
Translate in Chinese
Become EABM
Become Reviewer


Background: Racial/ethnic minorities have among the highest risks for Alzheimer disease and dementia, but remain underrepresented in clinical research studies.

Objective: To synthesize the current evidence on strategies to recruit and retain racial/ethnic minorities in Alzheimer disease and dementia clinical research.

Methods: We conducted a systematic review by searching CINAHL, EMBASE, MEDLINE, PsycINFO, and Scopus. We included studies that met four criteria: (1) included a racial/ethnic minority group (African American, Latino, Asian, American Indian or Alaska Native, and Native Hawaiian or Other Pacific Islander); (2) implemented a recruitment or retention strategy for Alzheimer disease or dementia clinical research; (3) conducted within the U.S.; and (4) published in a peer-reviewed journal.

Results: Of the 19 included studies, 14 (73.7%) implemented recruitment strategies and 5 (26.3%) implemented both recruitment and retention strategies. Fifteen studies (78.9%) focused on African Americans, two (10.6%) on both African Americans and Latinos, and two (10.5%) on Asians. All the articles were rated weak in the study quality. Four major themes were identified for the recruitment strategies: community outreach (94.7%), advertisement (57.9%), collaboration with health care providers (42.1%), and referral (21.1%). Three major themes were identified for the retention strategies: follow-up communication (15.8%), maintain community relationship (15.8%), and convenience (10.5%).

Conclusion: Our findings highlight several promising recruitment and retention strategies that investigators should prioritize when allocating limited resources, however, additional well-designed studies are needed. By recruiting and retaining more racial/ethnic minorities in Alzheimer disease and dementia research, investigators may better understand the heterogeneity of disease progression among marginalized groups. PROSPERO registration #CRD42018081979.

Keywords: Alzheimer disease, dementia, ethnicity, minority, race, recruitment, retention, systematic review.

Mayeda ER, Glymour MM, Quesenberry CP, Whitmer RA. Inequalities in dementia incidence between six racial and ethnic groups over 14 years. Alzheimers Dement 12(3): 216-24. (2016).
Mehta KM, Yeo GW. Systematic review of dementia prevalence and incidence in United States race/ethnic populations. Alzheimers Dement 13(1): 72-83. (2017).
National Institutes of Health. Clinical research. Available from:
Boise L, Hinton L, Rosen HJ, Ruhl MC, Dodge H, Mattek N, et al. Willingness to be a brain donor: a survey of research volunteers from 4 racial/ethnic groups. Alzheimer Dis Assoc Disord 31(2): 135-40. (2017).
Zhou Y, Elashoff D, Kremen S, Teng E, Karlawish J, Grill JD. African Americans are less likely to enroll in preclinical Alzheimer's disease clinical trials. Alzheimers Dement 3(1): 57-64. (2017).
Schnieders T, Danner DD, McGuire C, Reynolds F, Abner E. Incentives and barriers to research participation and brain donation among African Americans. Am J Alzheimers Dis Other Demen 28(5): 485-90. (2013).
Williams MM, Scharff DP, Mathews KJ, Hoffsuemmer JS, Jackson P, Morris JC, et al. Barriers and facilitators of African American participation in Alzheimer’s disease biomarker research. Alzheimer Dis Assoc Disord 24: S24-9. (2010).
Gelman CR. Learning from recruitment challenges: barriers to diagnosis, treatment, and research participation for Latinos with symptoms of Alzheimer’s disease. J Gerontol Soc Work 53(1): 94-113. (2010).
Chao SZ, Lai NB, Tse MM, Ho RJ, Kong JP, Matthews BR, et al. Recruitment of Chinese American elders into dementia research: the UCSF ADRC experience. Gerontologist 51: S125-33. (2011).
Grill JD, Galvin JE. Facilitating Alzheimer’s disease research recruitment. Alzheimer Dis Assoc Disord 28(1): 1-8. (2014).
National Institutes of Health. NIH policy and guidelines on the inclusion of women and minorities as subjects in clinical research – amended, October, 2001. Available from:
National Institute on Aging. Approved concepts. Available from:
Higgins JP, Green S, Eds. Cochrane handbook for systematic reviews of interventions. London: The Cochrane Collaboration (2011).
Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med 151(4): 264-9. (2009).
Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid A. Rayyan—a web and mobile app for systematic reviews. Syst Rev 5(1): 210. (2016).
Thomas BH, Ciliska D, Dobbins M, Micucci S. A process for systematically reviewing the literature: providing the research evidence for public health nursing interventions. Worldviews Evid Based Nurs 1(3): 176-84. (2004).
Bachman DL, Stuckey M, Ebeling M, Wagner MT, Evans WJ, Hirth V, et al. Establishment of a predominantly African-American cohort for the study of Alzheimer’s disease. Dement Geriatr Cogn Disord 27(4): 329-36. (2009).
Ballard EL, Nash F, Raiford K, Harrell LE. Recruitment of black elderly for clinical research studies of dementia: the CERAD experience. Gerontologist 33(4): 561-5. (1993).
Ballard EL, Gwyther LP, Edmonds HL. Challenges and opportunities: recruitment and retention of African Americans for Alzheimer’s disease research: lessons learned. Alzheimer Dis Assoc Disord 24: S19-23. (2010).
Barnes LL, Shah RC, Aggarwal NT, Bennett DA, Schneider JA. The minority aging research study: ongoing efforts to obtain brain donation in African Americans without dementia. Curr Alzheimer Res 9(6): 734-45. (2012).
Bonner GJ, Darkwa OK, Gorelick PB. Autopsy recruitment program for African Americans. Alzheimer Dis Assoc Disord 14(4): 202-8. (2000).
Christensen KD, Roberts JS, Zikmund-Fisher BJ, Kardia SL, McBride CM, Linnenbringer E, et al. Associations between self-referral and health behavior responses to genetic risk information. Genome Med 7(1): 10. (2015).
Darnell KR, McGuire C, Danner DD. African American participation in Alzheimer’s disease research that includes brain donation. Am J Alzheimers Dis Other Demen 26(6): 469-76. (2011).
Ford A. Alzheimer disease. Mol Chem Neuropathol 28(1-3): 121-4. (1996).
Fritsch T, Adams KB, Redd D, Sias T, Herrup K. Use of live theater to increase minority participation in Alzheimer disease research. Alzheimer Dis Assoc Disord 20(2): 105-11. (2006).
Gauthier MA, Clarke WP. Gaining and sustaining minority participation in longitudinal research projects. Alzheimer Dis Assoc Disord 13: S29-33. (1999).
Hinton L, Carter K, Reed BR, Beckett L, Lara E, DeCarli C, et al. Recruitment of a community-based cohort for research on diversity and risk of dementia. Alzheimer Dis Assoc Disord 24(3): 234-41. (2010).
Jefferson AL, Lambe S, Romano RR, Liu D, Islam F, Kowall N. An intervention to enhance Alzheimer’s disease clinical research participation among older African Americans. J Alzheimers Dis 36(3): 597-606. (2013).
Li C, Neugroschl J, Umpierre M, Martin J, Huang Q, Zeng X, et al. Recruiting US Chinese elders into clinical research for dementia. Alzheimer Dis Assoc Disord 30(4): 345-7. (2016).
Picot SF, Stuckey JC, Humphrey SW, Smyth KA, Whitehouse PJ. Cultural assessments and the recruitment and retention of African Americans into Alzheimer’s disease research. J Aging Ethn 1(1): 5-18. (1996).
Romero HR, Welsh-Bohmer KA, Gwyther LP, Edmonds HL, Plassman BL, Germain CM, et al. Community engagement in diverse populations for Alzheimer’s disease prevention trials. Alzheimer Dis Assoc Disord 28(3): 269-74. (2014).
Souder E, Terry TL. Use of lay educators to overcome barriers to research with black older adults: a case study using an Alzheimer’s disease center. Res Gerontol Nurs 2(4): 235-42. (2009).
Williams MM, Meisel MM, Williams J, Morris JC. An interdisciplinary outreach model of African American recruitment for Alzheimer’s disease research. Gerontologist 51: S134-41. (2011).
Gottesman RF, Fornage M, Knopman DS, Mosley TH. Brain aging in African-Americans: the atherosclerosis risk in communities (ARIC) experience. Curr Alzheimer Res 12(7): 607-13. (2015).
UyBico SJ, Pavel S, Gross CP. Recruiting vulnerable populations into research: a systematic review of recruitment interventions. J Gen Intern Med 22(6): 852-63. (2007).
Steenland K, Goldstein FC, Levey A, Wharton W. A meta-analysis of Alzheimer’s disease incidence and prevalence comparing African-Americans and Caucasians. J Alzheimers Dis 50(1): 71-6. (2016).
Aggarwal NT, Everson-Rose SA, Evans DA. Social determinants, race, and brain health outcomes: findings from the Chicago health and aging project. Curr Alzheimer Res 12(7): 622-31. (2015).
Liu G, Allen B, Lopez O, Aizenstein H, Boudreau R, Newman A, et al. Racial differences in gray matter integrity by diffusion tensor in black and white octogenarians. Curr Alzheimer Res 12(7): 648-54. (2015).

Rights & PermissionsPrintExport Cite as

Article Details

Year: 2019
Published on: 21 May, 2019
Page: [458 - 471]
Pages: 14
DOI: 10.2174/1567205016666190321161901
Price: $65

Article Metrics

PDF: 113
HTML: 16
PRC: 1