Facilitators, Challenges, and Messaging Strategies for Hispanic/Latino Populations Participating in Alzheimer’s Disease and Related Dementias Clinical Research: A Literature Review
Affiliations: [a] Division of Extramural Activities, National Institute on Aging, National Institutes of Health, Bethesda, MD, USA
| [b] Kelly Government, Kelly Services, Inc., Rockville, MD, USA
| [c] Fors Marsh Group, Arlington, VA, USA
| [d] Office of Communications and Public Liaison, National Institute on Aging, National Institutes of Health, Bethesda, MD, USA
Correspondence:
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Correspondence to: Holly A. Massett, PhD, 7201 Wisconsin Ave., Ste 2S-603, Bethesda, MD 20814, USA. Tel.: +301 827 7030; E-mail: [email protected].
Abstract: Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) disproportionally affect Hispanic and Latino populations, yet Hispanics/Latinos are substantially underrepresented in AD/ADRD clinical research. Diverse inclusion in trials is an ethical and scientific imperative, as underrepresentation reduces the ability to generalize study findings and treatments across populations most affected by a disease. This paper presents findings from a narrative literature review (N = 210) of the current landscape of Hispanic/Latino participation in clinical research, including the challenges, facilitators, and communication channels to conduct culturally appropriate outreach efforts to increase awareness and participation of Hispanics/Latinos in AD/ADRD clinical research studies. Many challenges identified were systemic in nature: lack of culturally relevant resources; staffing that does not represent participants’ cultures/language; eligibility criteria that disproportionately excludes Hispanics/Latinos; and too few studies available in Hispanic/Latino communities. The paper also details facilitators and messaging strategies to improve engagement and interest among Hispanics/Latinos in AD/ADRD research, starting with approaches that recognize and address the heterogeneity of the Hispanic/Latino ethnicity, and then, tailor outreach activities and programs to address their diverse needs and circumstances. The needs identified in this article represent longstanding failures to improve engagement and interest among Hispanics/Latinos in AD/ADRD research; we discuss how the field can move forward learning from the experiences of the COVID-19 pandemic.
