The NHMRC National Institute for Dementia Research (NNIDR) closed on 30 June 2020 after fulfilling its five-year remit to support the Australian dementia research sector and assist with the delivery of the Australian Government’s $200 million Boosting Dementia Research Initiative (BDRI). Although all 11 funding rounds have now concluded (2015-19), funded research projects will continue through until 2025. Information on the BDRI is available on the NHMRC website at https://bit.ly/2Zu0Utg.
The NNIDR was delivered in partnership with Dementia Australia (DA) and the 2021 Australian Dementia Forum will be now be organised by DA in partnership with the Australian Dementia Network (ADNeT).
Key outputs and resources from the NNIDR, including a review of brain banking, the Aboriginal and Torres Strait Islander Roadmap for Dementia Research and Translation and a new Culturally and Linguistically Diverse (CALD) Dementia Research Action Plan, are now available on the NHMRC website at https://bit.ly/2YNs7rS and highlighted below.
The NHMRC National Institute for Dementia Research’s (NNIDR) review on brain banking, Dementia Brain Banking in Australia, concluded that further work is needed to provide comprehensive advice on the issues raised in the report. The review provides an analysis of the current state of brain banks contributing to dementia research in Australia and proposes several models for brain banking in the future.
The NNIDR-led Reference Group overseeing the work on brain banking had asked for more detail on some key issues (such as financial assumptions behind proposed models, and optimal governance and funding arrangements) and said that linkages with international collections, relevant datasets, brain banks from other neurological disease areas and broader biobanking should also be considered.
In June, the NNIDR launched the Aboriginal and Torres Strait Islander Roadmap for Dementia Research and Translation, with NNIDR Director Janice Besch (pictured) describing it as “essential reading” for policymakers, funders, researchers and research leaders, and health and care professionals.
The Roadmap says the top five priorities for Aboriginal and Torres Strait Islander dementia research are: health literacy; prevention, risk reduction and diagnosis; access to services and supports; culturally informed services and workforce; and end of life care.
The Roadmap was developed after an extensive consultation process involving a national forum, written submissions, and consultations with 253 community members across 26 urban, rural and remote communities.
The consultation process was co-chaired by Professor Dawn Bessarab and Dr Kate Smith from the Centre for Aboriginal Medical and Dental Health (CAMDH) at the University of Western Australia and guided by a Working Group of researchers and health care professionals, who are primarily Aboriginal and Torres Strait Islanders.
“It’s really important to work with the community from the ground up,” said Professor Bessarab. “Adopting these priorities will improve research and health outcomes as well as increase opportunities for early collaboration and ongoing engagement with Aboriginal and Torres Strait Islander elders and communities.” The Roadmap is available on the NHMRC website at https://bit.ly/2YNs7rS.
Action Plan for CALD dementia research
A new Culturally and Linguistically Diverse (CALD) Dementia Research Action Plan, also launched in June, has identified five research and translation needs for immediate action.
The plan is the joint work of NNIDR and the National Ageing Research Institute (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 five areas for immediate action are 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.
In 2019, the NNIDR published a Strategic Roadmap for Dementia Research and Translation which provides a guide for research and translation aimed at improving the lives of people living with dementia, their families, and carers. The new Action Plan is founded on the Roadmap’s principle of recognising and responding to Australia’s cultural and linguistic diversity.
FECCA Chairperson Mary Patetsos welcomed the action plan, saying improved CALD inclusion in dementia research was critical in improving care outcomes.
The Action Plan is now available on the NHMRC website at https://bit.ly/3cuz7xr.