Development of a Culturally and Linguistically Diverse Dementia Research Action Plan

The underrepresentation of culturally and linguistically diverse (CALD) communities from research is a fundamental gap that characterises most Australian research on, and beyond, dementia. CALD participants can be excluded from research studies and clinical trials because of language barriers, which results in gaps in knowledge about this group.

For example, CALD Australians comprise nearly 30% of the population, but are represented in <10% of dementia research studies[1]. However, studies have also shown that there are established differences relating to ethnicity and culture in dementia prevalence and incidence, presentation, understanding of dementia, help-seeking and service use[2]. Consequently, there is a concern that research findings translated into clinical practice and social policy could be culturally inappropriate, disregard differences across Australia’s multicultural groups, and perpetuate social inequalities.

With the prevalence of dementia among older CALD Australians projected to increase by more than three-fold, from approximately 35,000 in 2010 to 120,000 by 2050[3], there is a need for communities and care providers to better understand, plan and develop services and supports for dementia diagnosis, treatment and care from a CALD perspective.

NNIDR has partnered with the National Ageing Research Institute (NARI) and key stakeholders to establish a Steering Group to consider ways forward that will address CALD Australians’ and communities’ dementia research and research translation needs. The Steering Group has recommended a consultation process to inform the development of a CALD Dementia Research Action Plan that will form an important component of the NNIDR Strategic Roadmap for Dementia Research and Translation.

The Action Plan will complement NNIDR’s Strategic Roadmap and provide a specific research and translation agenda to address the multidimensional challenges dementia represents to CALD communities in Australia.

Steps will also be taken to ensure that this Action Plan links strongly to other planning activities currently underway involving NHMRC, Dementia Australia, the Federation of Ethic Communities’ Councils of Australia (FECCA) and the Commonwealth Government for the improvement of CALD communities’ dementia-related health and well-being.

Community consultations with up to 14 community groups across Australia are currently underway, and NNIDR will be inviting survey submissions from individuals or organisations in the health, aged care, CALD service provision, and dementia research sectors, and interested members of the public, to inform development of the Action Plan. The consultation process is designed to capture key information about priorities and gaps for CALD-related dementia research and translation into practice, and your ideas for facilitating inclusion of CALD Australians in dementia research, and collaboration across CALD dementia research: amongst researchers, consumers and the aged care / service provision sector.

1. Low L-F, Draper B, Cheng A, et al. Future research on dementia relating to culturally and linguistically diverse communities. Australasian Journal on Ageing 2009;28:144-8.
2. Babulal GM, Quiroz YT, Albensi BC, et al. Perspectives on ethnic and racial disparities in Alzheimer's disease and related dementias: Update and areas of immediate need. Alzheimer's & dementia: Journal of the Alzheimer's Association. 2018.
3. Access Economics, Keeping Dementia Front of Mind: Incidence and Prevalence 2009–2050. Alzheimer’s Australia. August 2009.