For many Australians, dementia is not just a diagnosis. It is a deeply personal fear. The idea of losing memory, independence, and eventually the ability to make decisions about your own life raises difficult questions about dignity and control at the end of life.
As these conversations become more common around kitchen tables and in policy circles alike, one issue keeps resurfacing: should people with dementia be able to access voluntary assisted dying?
Dementia is now the leading cause of death in Australia, claiming more lives than any other single condition. Yet for the hundreds of thousands of Australians living with the disease, and the many more who will be diagnosed in the coming decades, voluntary assisted dying (VAD) remains effectively out of reach.
Current state laws demand two things that dementia progressively erodes: decision making capacity and a prognosis of death within six to twelve months. By the time a person reaches the terminal phase, they rarely retain the legal ability to request and confirm VAD. In New South Wales, dementia is explicitly excluded as a qualifying condition.
This creates a stark policy gap. Should people with dementia be able to access VAD? The question is no longer hypothetical. It is being asked in media, parliamentary reviews, and living rooms across the country. It is also the focus of emerging research at Queensland University of Technology.
Australia’s strict eligibility rules leave dementia patients behind
Every Australian state now has VAD laws, though the Northern Territory’s original 1990s regime was overturned and has not been reinstated. All current laws require a person to have decision making capacity throughout the process. This includes the ability to understand, retain, weigh, and communicate information about their choice.
They must also be close to the end of life, usually with an expected death within six months, or twelve months for some neurodegenerative conditions in certain states.
Dementia’s unpredictable trajectory makes these criteria almost impossible to meet at the same time. Early in the disease, a person may have capacity but is not near death. In advanced stages, when death is approaching, capacity is usually gone.
The result is that VAD for dementia is practically unavailable unless a person also has another qualifying terminal illness, such as cancer.
Many of Australia’s VAD laws are currently under review. Queensland’s review, for example, is set to examine eligibility criteria this year. Victoria and Western Australia have already completed their reviews without expanding access to dementia. The timing is ripe for a more informed and evidence based discussion.
How other countries approach VAD for dementia
Australia is not the first country to grapple with this issue.
In the Netherlands and Belgium, euthanasia, a form of VAD, is legal for dementia under strict due care criteria, including unbearable suffering with no prospect of improvement. These countries allow two main pathways.
Concurrent requests involve a person accessing VAD while they still have decision making capacity and can confirm their wishes. This often occurs earlier in the dementia journey, sometimes when a person still has years to live but is already experiencing what they consider intolerable suffering.
Advance requests, or advance euthanasia directives, allow a competent person to document specific future conditions that would trigger VAD. For example, when they no longer recognise family members or can no longer communicate.
In practice, advance directives in the Netherlands are legally valid but rarely carried out. Doctors often report deep ethical discomfort when asked to assess suffering in patients who can no longer communicate. Only a small number of such cases occur each year despite a much larger number of requests. Even minimal communication with the patient is often considered essential to confirm their wishes.
Canada presents a different model. Medical Assistance in Dying requires decision making capacity at the time it is provided and does not generally allow advance requests. However, since October 2024, Quebec has introduced legislation allowing advance requests for serious and incurable illnesses that lead to incapacity, including Alzheimer’s disease and other dementias. More than 2,100 people had been approved for such requests by early 2026.
These international approaches show that extending VAD to dementia is possible, but they also highlight the ethical and practical challenges involved.
The ethical and medical complexities are profound
Casey Haining, Research Fellow and PhD candidate at QUT’s Australian Centre for Health Law Research, has spent years examining end of life law. She says the issue continues to resurface because it touches on deeply held values and fears.
“It constantly gets brought up in the public, in media articles, in parliamentary debates. It is always seen as either people want this or it is in the too hard basket. We wanted to move beyond that binary question and actually unpack the complexities.”
One of the central challenges is timing and the idea of the future self. When should such a decision be made?
Under a concurrent model, a person may choose to access VAD earlier while they still have capacity. However, this could mean ending life with potentially years remaining.
Under an advance model, a person sets specific trigger points while they are still competent. But dementia can change preferences and lived experience. A person who once feared severe decline may later appear content or even happy in a care setting.
This raises a difficult question. Whose wishes should prevail, the past self who made the directive, or the present self living with dementia?
Other challenges include the difficulty of assessing capacity, particularly given how unevenly dementia can affect cognition. Communication barriers and subjective experiences of suffering further complicate decision making.
Family dynamics also play a significant role. Loved ones may be asked to determine when conditions in an advance directive have been met or to advocate on behalf of the person. This can place a heavy emotional burden on families and may introduce risks of conflict, pressure, or even abuse if safeguards are not strong.
Medical practitioners face their own ethical dilemmas. In advanced dementia, patients cannot confirm consent at the time of provision. Doctors must rely on past directives, clinical judgement, and input from family. Many report moral distress in these situations. The right to conscientious objection must also be respected.
There is also the question of whether anyone can truly understand what living with advanced dementia will feel like before experiencing it.
Haining emphasises that these are not abstract concerns.
“There is the question of when is the time for this. Are you accessing it so you can still make that decision for yourself, or are you putting something in place that other people might need to act on later? How do family members navigate that? How do medical practitioners feel about doing that?”
QUT’s exploratory study: building an Australian evidence base
To better understand these issues, QUT’s Australian Centre for Health Law Research has launched an exploratory study on voluntary assisted dying and dementia, funded by the Clem Jones Foundation.
The project includes a review of local and international laws and policies, as well as interviews with 63 participants, including people living with dementia, carers, and medical practitioners.
It also features a deliberative forum where participants, policymakers, clinicians, and advocacy groups come together to discuss the complexities in depth.
Early findings suggest there is significant support for extending VAD to dementia among people living with the condition and their carers. However, views differ on how and when it should be allowed, and what safeguards are necessary.
Importantly, the research does not attempt to answer whether VAD for dementia should be introduced. Instead, it explores how it might work if policymakers chose to move in that direction. This includes examining possible models, trigger points, oversight mechanisms, and system design.
Haining says the aim is to move beyond a simple yes or no debate.
“Just because it is complex does not mean we should or should not do it. But we do need to have these conversations. This research cannot answer the question of whether we should proceed, but it can help us understand what is involved.”
The team is now analysing how participants’ views evolved after group discussions. Initial findings focused on people living with dementia and carers will be presented at an international conference hosted by QUT in April 2026.
Why this matters now
Australia’s VAD framework was designed with strong safeguards to protect vulnerable people, a principle that remains widely supported. Extending access to dementia would require equally robust, and potentially new, protections.
These could include detailed advance directives, independent capacity assessments, mandatory waiting periods, ethics oversight, and clear clinical protocols for patients who can no longer communicate.
At the same time, maintaining the status quo has consequences. Many Australians fear the loss of autonomy associated with advanced dementia more than death itself. While public discussion has grown louder, detailed and evidence based policy debate has lagged behind.
The QUT study does not advocate for change. Instead, it highlights the need for a more informed conversation.
Whether Australia ultimately allows VAD for dementia will reflect broader societal values around autonomy, dignity, compassion, and protection. What is clear is that the current system leaves many people with dementia, and their families, without options that exist elsewhere or that some Australians say they want.
The evidence being gathered now will play a crucial role in shaping what happens next.
