CALD Australians make up nearly 30 per cent of the nation’s population but are represented in less than ten per cent of dementia research studies.
Working out what to do about this was the remit of a special think tank hosted by NARI and the NHMRC National Institute of Dementia Research which brought together consumers, researchers and service providers recently in Melbourne.
Central to the discussion was confirmation from all representatives that it is crucial to include CALD participants in dementia research, and vital to empower CALD communities to participate in dementia research.
Associate Professor Bianca Brijnath, NARI Director of Social Gerontology, said: “The think tank also confirmed that Australia has a unique role to play in the Asia-Pacific region leading in innovating around CALD dementia research.”
The next steps will be to collate the findings and to develop an action plan which sets out a specific dementia research and translation agenda for CALD communities. This will be taken to up to 14 national community consultations for further refinement. The action plan will be launched in June 2019.
“The action plan will provide a five-year framework for policy and strategy to address the multidimensional challenges dementia represents to CALD communities in Australia – people currently living with dementia in and from these communities and their families and carers.” Associate Professor Brijnath said.
Why a need for an action plan?
- The prevalence of dementia among older CALD Australians is projected to increase more than threefold from approximately 35,000 in 2010 to 120,000 by 2050.
- Communities and care providers must better understand, plan and develop services and supports for dementia diagnosis, treatment and care from a CALD perspective.
- A 2015 review by the Federation of Ethnic Communities Councils of Australia (FECCA) found that while there is a substantial body of research evaluating culturally sensitive tools for diagnosing dementia and increasing understanding of dementia among people from CALD backgrounds, little is known about the experiences of older CALD Australians with dementia.
- Research has shown that poor understanding of dementia combined with cultural stigma attached to dementia in CALD communities can lead to denial of the condition and delayed diagnosis for older people from CALD backgrounds.
- Neuropsychological tests of cognitive impairment designed for English speakers have been shown to be unsuitable for diagnosing people from non-English speaking backgrounds.
- When findings from research excluding people of CALD backgrounds are translated into clinical practice and social policy, the results are often culturally inappropriate and perpetuate existing social inequalities.