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
Authors | 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 |
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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. |
Keywords | dementia; ethnic; minorities; research; underserved |
Year | 01 Jan 2022 |
Journal | Alzheimer's & Dementia: Translational Research & Clinical Interventions |
Journal citation | 8 (1), pp. 1-20 |
Publisher | John Wiley & Sons, Inc. (US) |
ISSN | 2352-8737 |
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 access | Published as ‘gold’ (paid) open access |
Research or scholarly | Research |
Page range | 1-20 |
Publisher's version | License File Access Level Open |
Output status | Published |
Publication dates | |
29 Apr 2022 | |
Publication process dates | |
Accepted | 27 Oct 2021 |
Deposited | 03 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. | |
Place of publication | United States |
https://acuresearchbank.acu.edu.au/item/90xz9/including-ethnic-minorities-in-dementia-research-recommendations-from-a-scoping-review
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OA_Straiton_2022_Including_ethnic_minorities_in_dementia_research.pdf | |
License: CC BY-NC-ND 4.0 | |
File access level: Open |
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