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

Journal article


Brijnath, Bianca, Croy, Samantha, Sabates, Julieta, Thodis, Antonia, Ellis, Stephanie, de Crespigny, Fleur, Moxey, Annette, Day, Robert, Dobson, Annette, Elliott, Cerise, Etherington, Cathy, Geronimo, Mary Ann, Hlis, Danijela, Lampit, A., Low, Lee-Fay, Straiton, Nicola and Temple, Jeromey. (2022). Including ethnic minorities in dementia research: Recommendations from a scoping review. Alzheimer's & Dementia: Translational Research & Clinical Interventions. 8(1), pp. 1-20. https://doi.org/10.1002/trc2.12222
AuthorsBrijnath, Bianca, Croy, Samantha, Sabates, Julieta, Thodis, Antonia, Ellis, Stephanie, de Crespigny, Fleur, Moxey, Annette, Day, Robert, Dobson, Annette, Elliott, Cerise, Etherington, Cathy, Geronimo, Mary Ann, Hlis, Danijela, Lampit, A., Low, Lee-Fay, Straiton, Nicola and Temple, Jeromey
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.

Keywordsdementia; ethnic; minorities; research; underserved
Year01 Jan 2022
JournalAlzheimer's & Dementia: Translational Research & Clinical Interventions
Journal citation8 (1), pp. 1-20
PublisherJohn Wiley & Sons, Inc. (US)
ISSN2352-8737
Digital Object Identifier (DOI)https://doi.org/10.1002/trc2.12222
Web address (URL)https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/trc2.12222
Open accessPublished as ‘gold’ (paid) open access
Research or scholarlyResearch
Page range1-20
Publisher's version
License
File Access Level
Open
Output statusPublished
Publication dates
Print29 Apr 2022
Publication process dates
Accepted27 Oct 2021
Deposited03 Sep 2024
Additional information

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

This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
http://creativecommons.org/licenses/by-nc-nd/4.0/

Place of publicationUnited States
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https://acuresearchbank.acu.edu.au/item/90xz9/including-ethnic-minorities-in-dementia-research-recommendations-from-a-scoping-review

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