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

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. 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. 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. We make recommendations for consistent recruitment, collection, and reporting of variables relating to ethnic and cultural diversity in dementia research.

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© 2022 The Authors. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring published by Wiley Periodicals, LLC on behalf of Alzheimer's Association.

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BB has received funds from the Australian National Health and Medical Research Council (NHMRC); Australian Research Council (ARC); Australian Medical Research Future Fund (MRFF); Alzheimer's Association US; and several philanthropic groups for projects related to dementia, ethnicity, and aging. SC was an employee for the NNIDR at the time of conducting the research. JS has received funds from the Australian Dementia Centre for Research Collaboration (DCRC). AT reports nothing to disclose. SE was an employee for the NNIDR at the time of conducting the research and received support for attending work‐related meetings and/or travel within Australia during her tenure. FDC reports nothing to disclose. AM reports nothing to disclose. RD reports being a volunteer co‐Chair of Kippax Uniting Church and during 2020 being a volunteer board member of Kippax Uniting Care. Neither entity has a business or financial interest in the subject matter of this article. AD has received funds from the NHMRC and royalties as the author of a textbook. CE reports nothing to disclose. CaE reports nothing to disclose. MAG reports nothing to disclose. DH reports nothing to disclose. AL has received funds from the MRFF, Defence Science and Technology, and The University of Melbourne and has received travel support from the DCRC. L‐FL has received funds from the NHMRC, Dementia Australia, DCRC, Benevolent Society, and The EU Joint Programme–Neurodegenerative Disease Research (JPND), and serves on the Dementia Australia Research Advisory Board. NS reports nothing to disclose. JT has received funds from the NHMRC and ARC.