Diversity and inclusivity in Australian dementia prevention research: A mixed methods review

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.