The NHMRC National Institute of Dementia Research (NNIDR), in partnership with the National Ageing Research Institute (NARI), has launched the Culturally and Linguistically Diverse (CALD) Dementia Research Action Plan.
Speaking in Canberra, NNIDR Director Janice Besch called the Action Plan “the first of its kind in Australia”.
“The Action Plan identifies dementia research priorities for CALD communities, and guiding principles to support increased CALD inclusion in dementia research,” said Ms Besch.
“We saw a need for the dementia research sector to recognise and respond to Australia’s cultural and linguistic diversity. Despite people from CALD backgrounds comprising over one-third of Australia’s older population, they are under-represented in dementia research.”
The Action Plan was co-developed by NNIDR and NARI following a comprehensive, 12-month consultation process which involved 19 community consultations with 340 community members, two stakeholder workshops and two national surveys.
The extensive process was co-chaired by NARI Director of Social Gerontology, Associate Professor Bianca Brijnath, and NNIDR Assistant Director Stephanie Ellis, and guided by a Steering Group comprising researchers, policy makers, consumers, advocates, and health and care providers.
A/Prof Brijnath explained that “CALD Australians are diagnosed with dementia later than non-CALD Australians, and awareness of dementia is low in some of these communities”.
“Understandings of dementia vary immensely across different CALD communities. Poor dementia awareness can create stigma, and this can lead to greater social isolation and delayed help-seeking,” said A/Prof Brijnath.
“From our community consultations, we heard CALD Australians with dementia and their families have poorer access to health, care and social services and there are few culturally-appropriate options or culture-fair tools for dementia prevention, diagnosis, treatment and care.”
Understanding cultural differences in approaches to dementia, the role of ethnicity or migration experience in disease risk, and attitudes towards care are important elements of Australia’s research program to address the challenges that dementia presents for Australia’s ageing population, A/Prof Brijnath said.
The Action Plan identifies five research and translation needs for immediate action to:
- Identify effective ways to promote dementia risk reduction behaviours in CALD communities.
- Increase the development and uptake of evidence-based, culture-fair tools for dementia screening and diagnosis in primary and acute care settings.
- Inform ways to improve timely help-seeking for dementia in CALD communities.
- Develop, test, and implement culturally-specific models of dementia care that improve access to care and quality of life for CALD persons with dementia and their carers.
- Inform effective ways to train frontline health and care staff on how culture influences dementia, including through continuous professional development.
Guiding principles are also outlined in the Action Plan for all dementia researchers to support increased CALD inclusion in research, such as taking a community partnerships and co-design approach and making research materials and innovations accessible to all participants.
Implementation of the guiding principles has already begun with NARI and NNIDR undertaking preparatory work to develop guidance on how to collect, analyse and report on CALD participation in dementia research.
“The Action Plan is essential reading for policymakers, funders, researchers and research leaders,” said Ms Besch.
“The principles and priorities outlined will help to guide research investment strategies and enhance our commitment to reducing dementia disparities and increasing health and care equity among all Australians.”
The NHMRC National Institute for Dementia Research (NNIDR) 2019 Strategic Roadmap for Dementia Research and Translation provides a guide for research and translation aimed at improving the lives of people living with dementia, their families, and carers. This Action Plan is founded on the Roadmap’s principle of recognising and responding to Australia’s cultural and linguistic diversity.