Journal article
Diversity and inclusivity in Australian dementia prevention research: A mixed methods review
Alzheimer's & Dementia, Vol.12(3), pp.1-18
2026
PMCID: PMC13380669
PMID: 42473546
Abstract
Minoritized communities are disproportionately impacted by modifiable dementia risk factors but are underrepresented in dementia research globally. In Australia, the number of dementia prevention cohort and intervention studies has rapidly increased in the past two decades, yet the representation of minoritized groups has not been synthesized. The aims of this mixed‐methods review were to summarize the demographic characteristics of participants involved in Australian dementia prevention‐focused cohort and intervention studies. A systematic search of published literature, funded grant outcomes, and clinical trial registrations was conducted in October 2023 and updated in February 2025 to identify any Australia‐based cohort or intervention studies which focused on dementia prevention. Data custodians of eligible studies were contacted and invited to submit de‐identified participant‐level data for these studies. The demographic characteristics of participants involved in published manuscripts and submitted participant‐level data were synthesized. These data were then presented to 23 Australian dementia prevention researchers during a 2‐h workshop in March 2025. Using co‐creation methodologies, the workshop aimed to generate consensus‐based recommendations for governments, institutions, and individual researchers to improve inclusivity and representativeness in future dementia prevention research. Twenty‐eight published dementia prevention studies were summarized alongside fourteen studies for which de‐identified participant‐level data were submitted. Compared to the modern Australian population, participants enrolled in dementia prevention studies have been predominantly female, highly educated, and less diverse in terms of culture, language, ethnicity and gender. Thirty‐seven recommendations were generated by Australian researchers and ranked by importance, providing actionable changes for government and institutional policy and researcher practice. This review identified that participants enrolled in Australian dementia prevention research studies do not accurately represent those most at risk for dementia in the general population. Changes to recruitment and engagement practices and policies are recommended to improve the representativeness and inclusivity of Australian dementia prevention research. Australian dementia prevention research cohorts don't accurately reflect general population.Generalizability of evidence based on existing cohorts may be limited.Thirty‐seven recommendations to improve diversity and representation were generated by experts.Recommendations span individual researcher, institutional and government levels.
Details
- Title
- Diversity and inclusivity in Australian dementia prevention research: A mixed methods review
- Authors
- Olivia E. Giameos - Adelaide UniversityMaddison L. Mellow (Corresponding Author) - Adelaide UniversityDiana Karamacoska - Westmead InstituteAaron Davis - Florey Institute of Neuroscience and Mental HealthPaul A Gardiner - The University of QueenslandEddy Roccati - University of TasmaniaKaarin J. Anstey - UNSW SydneyNicolas Cherbuin - Australian National UniversityJessica M. Adsett - QIMR Berghofer Medical Research InstituteNikki‐Anne Wilson - UNSW SydneyKylie Radford - UNSW SydneyLouise Lavrencic - UNSW SydneyPerminder S. Sachdev - UNSW SydneySimone Reppermund - UNSW SydneySuraj Samtani - UNSW SydneyAnnabel P. Matison - UNSW SydneyZara A. Page - UNSW SydneyPhilip J. Batterham - Australian National UniversitySophie C. Andrews - University of the Sunshine CoastAlex Bahar-Fuchs - Deakin UniversityMichelle K. Lupton - QIMR Berghofer Medical Research InstituteAndrew Pipingas - Swinburne University of TechnologyAdrienne Withall - UNSW SydneyBelinda M. Brown - Murdoch UniversityHelen Macpherson - Deakin UniversityHannah A. D. Keage - Adelaide UniversityBritt Burton - Adelaide UniversityJames C. Vickers - University of TasmaniaDavid W Dunstan - Baker Heart and Diabetes InstituteAshleigh E. Smith - Adelaide University
- Publication details
- Alzheimer's & Dementia, Vol.12(3), pp.1-18
- Publisher
- John Wiley & Sons, Inc.
- Date published
- 2026
- DOI
- 10.1002/trc2.70296
- ISSN
- 2352-8737
- PMID
- 42473546; PMC13380669
- Copyright note
- © 2026 The Author(s). Alzheimer's & Dementia: Translational Research & Clinical Interventions 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 License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
- Grants
- Organisation Unit
- Healthy Ageing Research Cluster; Thompson Institute
- Language
- English
- Record Identifier
- 991246168202621
- Output Type
- Journal article
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