Including ethnic minorities in dementia research: Recommendations from a scoping review

Abstract

Introduction Ethnicity influences dementia etiology, prognosis, and treatment, while culture shapes help‐seeking and care. Despite increasing population diversity in high‐income settlement countries, ethnic minorities remain underrepresented in dementia research. We investigated approaches to enhance the recruitment, and consistent collection and analysis of variables relevant to, ethnic minorities in dementia studies to make recommendations for consistent practice in dementia research. Methods We did a scoping review, searching Embase, PsycINFO, Medline, CENTRAL, and CINAHL between January 1, 2010 and January 7, 2020. Dementia clinical and cohort studies that actively recruited ethnic minorities in high‐income countries were included. A steering group of experts developed criteria through which high‐quality studies were identified. Results Sixty‐six articles were retrieved (51 observational; 15 experimental). Use of interpreters and translators (n = 17) was the most common method to facilitate participant recruitment. Race and ethnicity (n = 59) were the most common variables collected, followed by information on native language (n = 14), country of birth (n = 9), and length of time in country of settlement (n = 8). Thirty‐three studies translated or used a culturally validated instrument. Twenty‐three articles conducted subgroup analyses based on ethnicity. Six high‐quality studies facilitated inclusion through community engagement, collected information on multiple aspects of ethnic diversity, and adjusted/substratified to analyze the impact of ethnicity on dementia. Discussion We make recommendations for consistent recruitment, collection, and reporting of variables relating to ethnic and cultural diversity in dementia research.

Barriers to and solutions for representative inclusion across the lifespan and in life course research: The need for structural competency highlighted by the COVID-19 pandemic

“…Findings from this review are consistent with prior reviews that have described solutions to increase representation of special populations in biomedical research, including among older individuals [3][4][5], minority populations [6,7], and women and children [8][9][10]. Importantly, only two existing reviews of which we are aware noted the importance of tailoring solutions to address particular social or institutional determinants of health that impact representation of special populations in biomedical research [11,12].…”

“…Previous reviews have examined the factors that influence research participation and retention among underrepresented populations, yet much of this existing research has focused on a single population and solutions to increase representation in research, while few studies have focused on barriers to participation in biomedical research [3][4][5][6][7][8][9][10][11][12]. Further, while it is common to examine SDOH as risk factors for poor health that are external to health care or research, improving representation in biomedical research requires assessing and remediating the impact of SDOH on health, health care, and research inclusion.…”

Health equity considerations in pragmatic trials in Alzheimer's and dementia disease: Results from a methodological review

“…within health administrative data). The prevalence of studies in our review reporting procedures to increase enrolment of individuals from equity‐relevant groups (6%) compares poorly to a recent review of 66 (mostly observational) studies in dementia research which found that 37 (56%) reported on strategies to improve recruitment of racial and ethnic minorities 27 . Finally, the prevalence of trials reporting engagement with patients in our review (15%) is higher than in a previous review of clinical trials more generally 35 as well as in a broader sample of pragmatic trials in which less than 10% of trial reports mentioned patient or public engagement 36 …”

“…Engagement with patients or other key stakeholders (e.g., knowledge users, community groups, decision‐makers) 25 has been demonstrated to enhance the relevance of clinical trials 26 and may draw attention to equity‐relevant considerations. 27 Therefore, in the first domain we also extracted whether the study reported any patient or other stakeholder engagement. If this was not explicitly reported, we reviewed the acknowledgments and author affiliations to determine whether any such stakeholders were acknowledged or included as co‐authors in the manuscript.…”

“…We extracted whether the title included equity‐relevant terms; whether there was an explicit objective pertaining to equity; whether any results in the abstract were reported across equity‐relevant subgroups; and whether the introduction/background of the report discussed anticipated differences in baseline risk, prognostic factors, intervention acceptability, coverage, or effectiveness across subgroups defined by equity‐relevant characteristics. Engagement with patients or other key stakeholders (e.g., knowledge users, community groups, decision‐makers) 25 has been demonstrated to enhance the relevance of clinical trials 26 and may draw attention to equity‐relevant considerations 27 . Therefore, in the first domain we also extracted whether the study reported any patient or other stakeholder engagement.…”