A new action plan aims to accelerate research to improve the care and lives of culturally and linguistically diverse Australians with dementia and their families and carers.

The Culturally and Linguistically Diverse Dementia Research Action Plan has been developed by the NHMRC National Institute of Dementia Research (NNIDR) in partnership with the National Ageing Research Institute (NARI).

The plan, which was developed over 12 months, was informed by consultation with community and advocacy groups and 19 community consultations with 340 community members, two stakeholder workshops and two national surveys.

NNIDR director Janice Besch said the plan identified dementia research priorities for CALD communities and guiding principles to support CALD inclusion in dementia research.

“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,” Ms Besch said.

NARI director of social gerontology Associate Professor Bianca Brijnath said CALD Australians were also diagnosed with dementia later than non-CALD Australians.

“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,” Associate Professor Brijnath said.

The action plan identifies research and translation needs that require immediate action to:

  • identify effective ways to promote dementia risk reduction behaviours in CALD communities
  • increase 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 people  with dementia from CALD backgrounds and their carers
  • inform effective ways to train frontline health and care staff on how culture can influence dementia, including through continuous professional development.

CALD peak body the Federation of Ethnic Communities Councils of Australia was among those extensively involved in the consultation.

FECCA chairperson Mary Patetsos said CALD Australians didn’t have equitable access to aged care or dementia services, which leads to increased isolation and challenges associated with dementia.

Mary Patetsos

“Ensuring culturally and linguistically diverse Australians are included in a meaningful way in research is crucial if we are going to understand how to successfully deliver equitable care for CALD Australians living with dementia,” she said.

NNIDR and NARI have commenced preparatory work to develop guidance on how to collect, analyse and report on CALD participation in dementia research.

Ms Besch said the action plan was essential reading for policymakers, funders, researchers and research leaders.

Access the CALD Dementia Research Action Plan here.

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