Dementia is now Australia's leading cause of death in older people, and Dr Michael Chapman believes we've been thinking about it the wrong way. Ahead of his National Palliative Care Week lecture at Parliament House, he talks about what we're missing, why it matters, and what we can actually do.  

There’s a question Dr Michael Chapman thinks we’ve already decided we know the answer to, and he believes we’re wrong.  

“We’ve already decided, as a society, that there’s no way to make dementia better,” he says. “That it’s this terrible, calamitous thing, and if it happens, there is absolutely nothing to be done. And I just don’t think that’s true.”  

Dr Chapman is Director of Palliative Care at Canberra Hospital, Lead of the Palliative Care Research Unit at Clare Holland House, and a dual specialist in geriatric and palliative medicine. His clinical work, his research, and his recently published book, Rethinking Dementia: Ripples and Responses, all circle the same conviction. That we have been approaching dementia in a way that, while understandable, is making things harder than they need to be, for patients, for families, and for the healthcare system around them.  

A stone in a pond  

Dementia is now the leading cause of death among older Australians, accounting for nearly one in ten deaths in 2023. Around 450,000 Australians are currently living with the condition. It’s a number that’s expected to double within two decades, but Dr Chapman says, the way we understand what dementia actually is, remains far too narrow.  

“As a community, we have a particular view about what dementia is,” he says. “And because of that view, we inadvertently, and deeply unfortunately, make it even harder than it has to be.”  

To explain what he means, Dr Chapman says dementia is a little bit like a stone falling into a still pool of water. “The impact in the individual person, the changes to their brain, memory, and communications, is a little like that initial splash. But then, there are all these ripples that move out,” he says. “Those ripples touch everyone close to the person with dementia. Family, carers, friends, healthcare staff, whole communities. And critically, the ripples travel both ways. The way we talk about dementia, the systems we build and the stories we choose to tell, all of it flows back, shaping what the experience of dementia actually becomes.”  

“The more we assume a simplistic notion, that dementia means losing yourself, that it’s nothing but tragedy and loss, the more we actually create that reality,” he says.

Nellie's story  

To understand what Dr Chapman means, it helps to hear the story of Nellie, a woman Dr Chapman met through his research.  

Nellie had been the pillar of her family. A devoted mother who held everything together as the family moved from place to place through her children’s early years. When her memory began to change and dementia was eventually diagnosed, the family found it almost impossible to talk about openly. She had always been their strength.  

When Nellie's care eventually required a move to an aged care facility, her adult children were consumed by guilt. They had promised she would never go into a home. That guilt came out sideways. In the way they scrutinised staff, in the tensions that built between family and facility until the situation became ‘almost toxic’, says Dr Chapman.  

Nellie herself remained largely untouched by it. “If you spent time with her and really listened, which takes more energy and effort with dementia, so it often doesn’t happen the way it needs to, she was full of love and pride for her kids,” he says. “The thing that just bubbled to the surface was her joy and her gratitude.”  

When everyone finally sat down together and talked openly about what Nellie actually needed, what her children were carrying, and what the staff were experiencing, everything changed. The family visited more. Staff felt valued. Nellie continued to live ‘a different but really meaningful life’ in the facility, says Dr Chapman.  

 “It wasn’t just the dementia and Nellie’s changes that were the problem,” he says. “It was our reactions and responses to them. Our difficulties in being able to really communicate and work through those together.”  

Nellie's story isn’t unusual. And for Dr Chapman, it points to a gap the healthcare system has yet to close. 

A gap in care  

Dementia is a palliative diagnosis. It is progressive. People die with it and because of it. However, referrals to specialist palliative care for people with dementia remain uncommon, and often happen only when death is very close.  

Part of the challenge is historical, says Dr Chapman, citing the fact palliative care in Australia grew largely from cancer care, and its models and training don’t always map onto the aged care settings where people with dementia tend to live and die.  

“We need to realise that aged care, dementia care, and palliative care are deeply interrelated, and teach them that way,” he says. “We’re still a long way behind in understanding exactly when and how palliative care can and should be provided within dementia, and how we support not just the person with the diagnosis but the people around them.”  

There are models that show what better looks like. Needs-rounds approaches, where palliative care expertise is brought into the spaces where people with dementia actually live, have shown improvements in quality of care, staff confidence, and can support families to avoid unnecessary hospital admissions when that's what they want. These models, Dr Chapman says, need to become routine rather than the exception. 

What we can do  

Beyond clinical practice, Dr Chapman points to policy as an area where there is real room to move. One example is supported decision-making, an approach that keeps people with dementia more involved in decisions about their own lives for longer, rather than reaching a point where decision-making is simply handed over to someone else.   

Dementia care villages are another example he highlights. Environments designed to feel like normal communities where people with dementia can move through daily life in ways that are meaningful and safe. The model originated overseas and has been replicated in various forms around the world, with examples starting to emerge in Australia.  

The question, he says, is whether we're willing to invest in what we already know works.  

It's not simple, Dr Chapman acknowledges. But it is possible. There's a quote from the writer Brian Klaas he comes back to often: ‘We control nothing but influence everything’. It's a line that runs through his book, which Dr Chapman says was written for families, carers, and anyone navigating dementia alongside someone they love. He describes the book as a responsibility he felt he owed to the people who had shared their stories with him. A way to tell the parts of dementia that usually remain untold.  

“There are experiences of joy and humour and love and generosity and learning and growth that are part of the dementia experience that we just don't hear about,” he says. “I had to try, however humbly, to do something about that.”  

On 14 May, Dr Chapman will deliver the National Palliative Care Week Special Guest Lecture, Rethinking Dementia and End-of-Life Care, via livestream from Parliament House. In line with this year's NPCW theme, Getting to the Heart of It: Big Questions. Real Answers, he will explore what dementia means for our communities, discuss new ways of thinking about dementia and its implications for palliative care, and consider how better conversations, practical support and person-centred care can improve quality of life, dignity and connection for everyone it touches. 

“There are things we can do. We have the power to create more positive change in dementia. It is up to us to determine what sort of influence that will be.”

Watch the livestream recording of Dr Michael Chapman’s National Palliative Care Week special guest lecture 'Rethinking dementia'.