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.
Great article. Thanks. BUT, I’m not really happy with the concept of VAD for people with dementia. One issue I have is this: the person with a newly diagnosed dementia who rationally decides they want VAD when at some future date they have deteriorated to an extent where life is intolerable, signs the VAD. Let’s call this Time 1.
At a future date, most likely some years in the future, life has apparently become intolerable, although the person can no longer express this as they can neither communicate nor rationally make decisions about their life. Let’s call this Time 2.
Now, why do we assume that the person at time2 is the same person as at time1? Their views might have changed. To us their life is intolerable but if they could communicate they may say, ‘yes, my life is hard, but I don’t want to die’. If they think this we will not know it. And if we kill them then we will have done them a considerable disservice. This is just one concern I have.
I fully agree with you. We should learn from the Netherlands experience. Mostly, it is those of us looking on from the outside, who think the dementia patient’s life is very undignified compared to what they used to be so they think their loved one would be better off out of their misery. People do change their minds and as you rightly pointed out, how could they convey that to their carers. The point you raised is just one. There are other concerns with letting a person with reduced or zero mental capacity make such a decision.
“Dementia is incurable and fatal”? So is life. To live is to have a fatal ending. VAD should never be anywhere near aged care facilities. The rest of the residents in a facility that offers VAD would feel pressured and possibly frightened just like in the Netherlands where VAD has been for quite a few years and now there are cases of the elderly and even people with treatable diseases like depression, either being coerced into doing it or requesting it for minor issues. It is reported that some elderly in the Netherlands are frightened to go into hospital for fear of that happening to them. There was talk of bringing it in as an option to aged care. I hope it never comes to that. If that is what a fully cognizant person wants to do, do it away from an aged care facility so the other residents are not affected by knowing that a resident in their room is ending their life. Many hospitals have wards specifically for that. It will be a very sad day if it becomes common place or offered in aged care facilities. People who do not have full mental capacity should never be making a life ending decision. There is plenty of time to make decisions like that before they get mind altering diseases. I don’t believe in VAD personally but if someone else wants to do it, they should be of sound mind to make such a decision. And, before anyone on here thinks I haven’t been on the dementia roundabout. I have. I’ve seen it all over a 3 year period fairly recently with my dear mother in an aged care facility. I’ve also had a close family member use VAD last year. The feeling afterwards from a VAD death compared to a more “normal” death like my mother’s is quite different. There was so much extra sadness associated with the VAD death. I think VAD is a nasty way to go out.
I found this paper a very helpful summary. Thankyou
VAD should be available if I choose, when of sound mind, that’s what I want. i.e. i dont want to be the future dementia ridden self, with all the loss of liberty that brings. I should be able now to detail that if my wife and 2 children collectively agree that this is clearly not the condition i wanted to exist in, with Dementia then they have legal authority to access VAD for me. It’s entirely inappropriate for someone with dementia to access VAD if they hadnt registered a advanced directive with some central authority prior to gaining the illness
Hi Robert, I accept your feelings about your ‘future dementia ridden self’, but what I worry about is this: what if your future self does not want to die? Your future self almost certainly will not remember your current self; most likely will have no recollection of anything you have signed; most likely not understand the concept of VAD; will probably not be able to identify any family members and may not even understand what it means to die. We are talking about two selves here, two separate identities.
I cared for my mother, who had Alzheimers Dementia, for four years. She was then admitted to a care facility. On her second night there she fell out of bed and broke her hip. She was unable to tell anyone where she felt pain. The staff phoned the doctor but said it wasn’t urgent. The doctor didn’t attend until the end of the day, so my mother sat around in pain for probably 16 hours. The doctor realised immediately that the hip was broken and my mother was operated on that night. Mum never walked again, though it had been her favourite pastime. She did not remember anyone, could not converse. Her only response was a smile when she saw her great granddaughter. I believe that VAD does not go far enough. I would like an advanced request for myself if I had such a condition. My only reservation is that I would be putting someone else in a difficult position, I know how difficult because my mother-in-law asked every member of the family to put her out of her pain and none of us could do it, despite the fact that we all believe in VAD. Thankyou for this article.
What you are describing is an absolutely appallingly lack of professional knowledge and experience of care staff. Not unknown in residential aged care facilities I might add. I don’t think this is an argument FOR assisted dying rather it is an argument ABOUT an amazing lack of clinical care by the facility management and senior staff. A person with a fractured hip does not need to say ‘I am in pain’, they will tell you they are in pain in numerous other ways. This is an indictment on the whole system and importantly on government who faff around with fancy statements about diversity and rights and fail at the most basic clinical procedures.