A key report highlights critical gaps in legal protections, service accessibility, and policy responses, emphasising the urgent need for reform. Nearly 30,000 Australians live with young onset dementia, with symptoms beginning before age 65. However, too many are denied the legal safeguards needed to remain involved in decisions about their care, finances and daily lives.
A new Issues Paper from the University of Technology Sydney (UTS), the University of Sydney, and Dementia Law Network found that people with young onset dementia are disadvantaged by incorrect assumptions that they lack capacity, experience significant shortcomings in how capacity assessments are conducted, are excluded from decisions about their lives, and lack access to legal supports.
The findings underscore the need for relational, rights-based and coordinated approaches to care, and call for structural changes across the National Disability Insurance Scheme (NDIS), aged care, legal and health systems.
Key legal gaps include:
- Government policy
- Policing and court processes
- Service gaps – a conceptual mismatch was revealed between the NDIS framework and the reality of neurodegenerative conditions.
- Legal literacy gaps for health professionals
- Insurance and compensation gaps
The report, authored by Professor Nola Ries, Dr Sascha Callaghan, Dr Kristina Chelberg and Dr Evelyn Rose and Associate Professor Fiona Kumfor, highlights critical gaps in legal protections, service accessibility, and policy responses.
Police may be called in situations where a person with young- onset dementia is behaving differently. These situations are highly distressing for all involved. Enabling people to get diagnosed early and have access to clinical support is essential in ensuring people don’t reach a crisis point. There is a potential role for legal practitioners to be involved in multidisciplinary care teams, to provide input on areas like capacity and future planning.
Fiona Komfor, co-founder of the Dementia Law Network.
A/Prof
As the report recognizes:
“Young-onset dementia presents unique and complex legal issues and implications that span human rights, disability law, disability care, aged care, employment, criminal justice, and other areas of law. Despite growing awareness, legal and policy frameworks in Australia often remain geared toward older populations, failing to address the distinct needs of younger individuals facing dementia-related challenges.”
Making these issues a research priority will be essential to inform recommendations to support people living with young-onset dementia and their families.
Research:
How to cite this report Nola Ries, Sascha Callaghan, Kristina Chelberg, Evelyn Rose & Fiona Kumfor, Legal Issues for People Living with Young Onset Dementia in Australia (University of Technology Sydney, 2025).
DOI: 10.71741/4pyxmbnjaq.30021721
Declaration:
This report was funded by the Young People in Nursing Homes (YPINH) National Alliance. This work is part of the Joint Solutions Project funded by the Commonwealth Government. Authors Fiona Kumfor and Nola Ries also acknowledge funding support from the Alzheimer's Association (App # 1150792)
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