Start with an absence. In 2024, three researchers at Charles Sturt University went looking for Australians living with dementia in the country's own research on voluntary assisted dying (VAD). They searched the peer-reviewed literature published between 2017 and August 2023, screened it down to 21 publications, and found that not one of them represented Australians living with dementia. The voice of a single person with a terminal illness appeared in a study of care partners. Health-care practitioners turned up in 16 of the 21. That scoping review, by Adrienne Matthys, Belinda Cash and Bernadette Moorhead, appeared in the Australasian Journal on Ageing; its conclusion was less a finding than an indictment, that people living with dementia should be represented as what the authors call living experience experts.
The same three researchers then did the obvious thing, which nobody had done. The first study, published online in Ageing & Society on 24 September 2025, was an online survey of 36 people living with dementia in Australia who self-selected to take part. The authors report that the vast majority wanted the option of accessing VAD themselves, and that most wanted provisions for accessing it through advance care directives. Autonomy came up again and again, raised by 21 of them in general terms; one participant, recorded as Rose, 86, put it as "It should be MY choice". The paper describes itself as the first known Australian study to explore VAD from the perspective of people living with dementia.
The second study went closer. Twelve of the survey respondents opted in to a semi-structured interview, conducted online over Zoom, lasting between 30 and 60 minutes, with a social gerontologist who had worked for years alongside people living with dementia in community and residential settings. Three brought a care partner into the call. Eight were women, four were men. All twelve supported VAD being available as an end-of-life care option for people living with dementia. That paper was published online in the journal Mortality on 23 July 2026, and on 23 September 2026 the lead author set both studies out for a general readership in The Conversation, syndicated by Medical Xpress.
What the twelve talked about is not abstract. They wanted a good death, and they wanted some control over its timing: "I would rather go at a time of my choosing," said a participant recorded as Joseph, 75. They talked about the thinness of palliative and end-of-life care in rural communities, about the quality of community aged care, about not wanting to die in a hospital. Several described the prospect of VAD being lawfully available as something that would improve life now, by removing a fear from the room. And the authors report a harder current running underneath: faced with a bad death and no legal option, the view raised most consistently was suicide. Some participants also turned the usual argument inside out, treating the safeguards built to protect them from coercion as a risk in themselves, a protection that could leave them more exposed, not less.
For families, the legal picture is the part that does not move. Australia's VAD laws are state and territory based, and the authors note that in some, such as New South Wales, a dementia diagnosis is explicitly excluded as a ground for access. The ACT's Voluntary Assisted Dying Act 2024 commenced on 3 November 2025 without the six-month or twelve-month prognosis requirement used elsewhere, and as the Canberra Times set out that day, a person who develops dementia after beginning the process may remain eligible provided their decision-making capacity is not impaired. Capacity, held contemporaneously, remains the gate. Advance directives, which most of the 36 surveyed wanted to be able to use, do not open it anywhere in Australia.
So what is actually new here is not a change in the law or a claim about capacity testing. It is evidence that a group routinely spoken for can speak, and did, in detail, weighing risks and coercion and rural service gaps against their own fear of what is coming. One participant quoted in the authors' own account, Harold, 70, framed exclusion as discriminatory and argued that what is needed is better support to make these decisions. Whether Australian parliaments agree is a separate question. What they can no longer say is that nobody asked.