The NHMRC National Institute of Dementia Research (NNIDR) has closed, with the production of a guide to address the high burden of dementia among Aboriginal and Torres Strait Islanders its final initiative.
The launch of the Aboriginal and Torres Strait Islander Roadmap for Dementia Research and Translation came just days before the NNIDR, which has now fulfilled its five-year remit to expand national dementia research, wound up on June 30.
The roadmap provides guidance for government, researchers, industry and philanthropy on dementia in Indigenous communities.
A companion document to the 2019 Strategic Roadmap for Dementia research, it was produced after consulting with 26 Indigenous communities across urban, rural and remote Australia.
NNIDR Director Janice Besch says the roadmap is a “critically important” document given the general lack of understanding by health care workers and service providers of social and cultural factors around dementia and Indigenous Australians.
“The Roadmap identifies dementia research priorities for Aboriginal and Torres Strait Islander communities in urban, regional and remote areas, and guiding principles for culturally-appropriate Aboriginal and Torres Strait Islander dementia research,” she said at its launch in Canberra on June 25.
Aboriginal and Torres Strait Islander Australians experience dementia at a higher rate and with an earlier onset than their non-indigenous counterparts, possibly because of higher rates of disease, adverse life events and lower levels of employment and education.
Chair of the consultation process Professor Dawn Bessarab says elders play a critical role in indigenous communities and if an elder is affected by dementia it has a flow-on effect to the whole community
Elders play an incredibly important role in communities, and in communities’ wellbeing – they are the knowledge holders. If Elders are affected by dementia, the whole community is affected.
Co-chair Dr Kate Smith says there is limited research and poor recognition of dementia within Indigenous communities.
‘From our community consultations, we heard that Aboriginal and Torres Strait Islander Australians want more information about what causes dementia and how to prevent it, early warning signs, and how to access quality and culturally-appropriate care,’ she said.
Guiding principles and priorities
The roadmap contains several principles including building capacity within communities, valuing indigenous knowledge systems and acknowledging data security.
Research priorities include boost health literacy, prevention, risk reduction, diagnosis and access to supports, as well as establishing culturally informed services.
The NNIDR was established in 2015 to oversee the expansion of dementia research under the federal government’s Boosting Dementia Research Initiative (BDRI).
The BDRI Grant Program consisted of eleven competitive funding rounds, run from 2014 to 2019, and supported dementia research fellowships, team grants, international collaborations, priority rounds and the establishment of a national dementia network.
It also awarded $9 million to the Queensland-based Clem Jones Centre for research focused on prevention and treatment.
The NHMRC says it remains committed to supporting dementia research.
This story first ran in Community Care Review.