- Posted on 26 Nov 2025
- 3-minute read
Nearly 30,000 Australians live with young-onset dementia, with symptoms appearing 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 has found.
Legal issues faced by Australians with young-onset dementia have largely been overlooked until now.
Unlike the common stereotype of an older person with memory loss, people diagnosed with dementia at a young age are often physically well but may experience changes in behaviour or personality that lead to misunderstanding and stigma. They can face unique legal problems and denials of their rights.
The issues paper, Legal issues and implications in the context of Young Onset Dementia, 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 research, conducted for the Young People in Nursing Homes National Alliance (YPINH) as part of the national Joint Solutions Young Onset Dementia Project, involved interviews with people living with dementia and their family members, as well as a roundtable with frontline service providers and clinicians.
The report, authored by Professor Nola Ries, Dr Sascha Callaghan, Dr Kristina Chelberg, Dr Evelyn Rose and Associate Professor Fiona Kumfor, highlights critical gaps in legal protections, service accessibility, and policy responses.
Key findings:
- A widespread misconception that a dementia diagnosis means immediate loss of legal capacity, leading to guardianship or power of attorney arrangements being activated far too early.
- Capacity assessments are frequently rushed, conducted in unfamiliar settings, and lack the support people need to participate meaningfully.
- Fragmented NDIS, aged care, health, and legal systems often leave families without clear pathways or specialist legal support or advice.
- People with young onset dementia express preferences for rehabilitation/reablement services to maintain function, however this is rarely offered, funded or accessible.
The report recommended major reforms, including consistent standards for capacity assessments grounded in supported decision-making, expanded specialist and pro-bono legal services accessible via memory clinics, dementia-focused training for legal professionals, a dedicated young onset pathway within the NDIS, and better cross-sector coordination.
'Dementia capability' in the legal profession means lawyers have the knowledge and skills to work effectively with clients who seek legal help following a diagnosis of dementia.
The authors point to international examples – including Germany’s National Dementia Strategy – which explicitly addresses legal issues for people with dementia, including young onset dementia.
The strategy endorses free legal advisory services, integration of legal and long-term care supports, and training for general practitioners and legal professionals to improve dementia-related legal awareness.
Professor Nola Ries from the UTS Faculty of Law, co-founder of the Dementia Law Network, said there was a need for “dementia capability” in the legal profession.
“This means lawyers have the knowledge and skills to work effectively with clients who seek legal help following a diagnosis of dementia,” Professor Ries said.
“People with young onset dementia often want to put in place well-drafted legal documents to plan for their future. They may have specific legal concerns around employment, eligibility for services, access to superannuation, insurance cover and family matters.”
Dementia Law Network co-founder Associate Professor Fiona Kumfor from the University of Sydney School of Psychology said enabling early diagnosis and access to clinical support was essential to “ensuring people don’t reach a crisis point.”
“Police may be called in situations where a person with young onset dementia is behaving differently,” Associate Professor Kumfor said. “These situations are highly distressing for all involved.
“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.”
Professor, Faculty of Law