Australian law requires people to keep decision-making capacity until they are close to death, which dementia rarely allows. Palliative Care Australia warns that people adapt to a “new normal”, and a new international study shows how other countries have tried to protect the later self without ignoring the earlier one.
Anyone who has watched a loved one live with dementia will tell you that people without that experience rarely grasp how devastating it is. The word I hear most often is “cruel”.
As someone caring for a mother with advanced dementia, it is not uncommon to hear terminal illnesses like cancer brought up as a morbid preferred alternative to dementia by other family carers that I converse with at mum’s aged care home.
Obviously, not everyone’s experience is the same. Some people live with dementia for years and still find meaning and enjoyment, and that matters. But for many families, one question is hard to avoid.
Yet other terminal illnesses qualify
Voluntary assisted dying is lawful in every Australian state and the ACT.
Someone with terminal cancer who has decision-making capacity and is expected to die within six months can ask for help to die. So can someone with a neurodegenerative disease like motor neurone disease, with a longer window of 12 months in most jurisdictions.
Dementia is also progressive and incurable, and it ultimately kills. So why can’t people with dementia qualify?
In every state and territory with a law, the person must have decision-making capacity when they request voluntary assisted dying and again when they receive it. Advance requests are not allowed. The rules on how close to death a person must be differ:
Researchers at Queensland University of Technology’s Australian Centre for Health Law Research call the combined effect a “catch-22”. Their study examines every jurisdiction in the world where assisted dying is lawful and the authors map the law rather than argue for change.
By the time someone with dementia is near enough to death to qualify, they have almost certainly lost the capacity to ask. The researchers rate access for dementia in Australia as “no (or very unlikely)”.
Advance requests, where you state your wishes while well, are not available here at all. No relative, power of attorney or substitute decision-maker can make the request on someone’s behalf. A power of attorney can help guide a person’s care, but this decision is not one they can make.
The “new normal” question
The hardest question is whether a wish made in good health can be trusted once the illness has changed the person.
Palliative Care Australia says it operates within current laws and acknowledges community appetite for a review, but stresses that any changes must keep patients and clinicians safe.
In a written response, board chair Dr Peter Allcroft put the central concern plainly.
A decision made today about an acceptable quality of life may change, he said, because as an illness progresses people accept a “new normal” and often find meaning and enjoyment in life. “We cannot predict what will happen in the future,” he said, and the law would need protections to account for that.
Research cited by the QUT team points the same way. Suffering can ease as people adapt, and many people with advanced dementia lose insight into their condition and may no longer experience their situation as they once feared they would.
When the wish and the person collide
Where countries have tested this question in practice, the outcomes differ.
In a 2023 Spanish case, a woman with Alzheimer’s had written an advance directive in 2015, before her diagnosis and before assisted dying was legal in Spain.
A court found her ineligible, in part because when she was questioned she did not indicate that she was in pain, and she appeared calm and well groomed. Her earlier wish was not enough.
Canada has gone the other way in some circumstances. A person assessed as eligible while they still have capacity can make a written arrangement for assisted dying to be provided later, after capacity is lost.
Guidance says it can proceed even when the person shows no sign of current suffering, as long as they show no sign of refusing. Some of the terminology in that guidance, including the phrase “happily demented”, is contested.
In the Netherlands, a doctor must find current unbearable suffering before acting on an advance directive.
Even so, a Dutch geriatrician who provided assisted dying to a woman with advanced dementia was prosecuted. She was ultimately cleared by the country’s Supreme Court in 2020, and the case still makes doctors cautious.
Four ways to protect the later self
Swiss law and the German ruling require only capacity and a voluntary request, with no qualifying medical condition, and the person must take the medication themselves. That respects the person’s choice at the time they make it, but only for people who still have capacity.
The Netherlands recognises written advance directives but requires a doctor to assess the person’s current suffering.
Québec introduced a dedicated advance request in October 2024. The person must name specific, observable symptoms that would trigger the request, and those symptoms must recur before it can be acted on.
If the person shows signs of refusing at the point of administration, the process stops and their request is permanently removed from the register.
That last safeguard raises its own problem. Resistance to care is common in dementia and is not always about the thing being refused, and Canadian guidance admits it is difficult to tell the difference. Québec reportedly has more than 2,400 advance requests on file but only about ten enacted, according to a conference presentation rather than the official report.
Belgium and Luxembourg allow advance requests only when a person is permanently unconscious, which is rarely a feature of dementia.
The numbers
Where assisted dying for dementia is possible, it accounts for a small share of cases. In the Netherlands, dementia makes up roughly 2.4 to 4.8 per cent of assisted deaths, and only two to eight a year involve an advance directive.
In Canada the figure is 0.5 to 2.2 per cent, and in Belgium 0.6 to 1.7 per cent. A Swiss study found 56 dementia cases among 8,738 over two decades. Data is thin or missing in several countries, including Spain and Colombia.
Is anyone ready?
Even if the law changed, delivering it would be another matter. Allcroft said aged care staff and providers are “completely ill-equipped” for such a change and would need dedicated education and resourcing.
He described any change as “a long way off” and warned of a “looming gap” in access to palliative care, with the potential for unmet need. Good care, he said, must be available to people with dementia while decisions about legislation are made.
Practitioners face their own barriers. Few are willing to provide assisted dying, and where the law is unclear they risk legal and professional consequences, as the Dutch prosecution showed.
For now, a wish written down in good health carries no weight in Australia’s voluntary assisted dying process. Several states are reviewing their laws, and Canada and Belgium are considering widening advance requests.
Whether Australia follows will depend on whether it can answer Allcroft’s question: how do you honour what a person wanted without overriding who they have become?
If this story raises concerns for you, Lifeline is on 13 11 14. Dementia Australia’s helpline is 1800 100 500.
