Promoting voice of people living with dementia in aged care improvement & reform: developing innovative approaches through participatory action research
Dementia Australia Research Foundation - Post-doctoral research fellowship (current)
This three-year research project (>$400,000) was competitively awarded by Dementia Australia Research Foundation (DARF) and hosted within the Faculty of Law and UTS Ageing Research Collaborative (UARC) at the University of Technology Sydney (UTS).
The project addresses a critical gap: despite the majority of residents in Australian aged care having a diagnosis of dementia, residents with dementia may be systematically excluded from feedback, consultation and reform processes due to legal, structural, and cultural barriers. Instead, the experiences and preferences of residents with dementia are mediated by proxies such as family, care-partners, experts and legal representatives.
The project will use participatory action research within residential aged care settings to explore and trial inclusive, innovative approaches to improve direct participation of residents with dementia in aged care consultation — such as easy read, communication aids, arts and sensory methods, and photo-voice.
The project will identify barriers, build evidence, and generate practical resources to promote the voices of residents with dementia in aged care improvement and reform. Outcomes aim to ensure aged care systems ‘ask and hear’ the voice of residents with dementia themselves, not just their proxies.
Participatory research design
The project will collaborate with residents, family and staff to identify existing opportunities or mechanisms that should represent the voice and experiences of people living with dementia and ask what changes or actions (ie using innovative approaches) can be made to bring that voice in?
Missing voices
Post-Royal Commission, people with dementia continue to be pushed to the ‘margins’ of civic participation and reform in matters that directly affect them. This unaddressed exclusion contributes to unresponsive aged care systems and supports a radical shift toward innovative approaches to ensure all resident voices are heard.
What are innovative approaches?
The right to ‘have your say’ in aged care consultation should not come down to whether a resident can fill in a ‘feedback form’. Innovative approaches offer significant potential to improve direct participation and will be explored in this project to promote voice of residents with dementia in aged care settings.