Reducing dementia stigma: how far have we actually come?
Centre for Healthy Brain Ageing (CHeBA), UNSW Sydney
- World Alzheimer’s Day is today, 21 September
- The story traces more than 50 years of changing attitudes to dementia in Australia through the experiences of three families across three generations: Professor Henry Brodaty and his father; entertainer Don Lane and his son PJ Lane; and documentary creator sisters Adelaide and Lucinda Miller and their Nan.
- A key message is that the next stage of dementia awareness needs to go beyond recognising the condition. Australians also need greater understanding of how to communicate, connect and continue including people living with dementia.
- Professor Brodaty is advocating for a national healthy brain promotion program, encouraging Australians to think about brain health throughout life rather than waiting until cognitive problems emerge.
- This World Alzheimer’s Day, CHeBA is launching its Dollar for Dementia giving campaign, calling on Australians to donate $1 or more towards research focused on healthier brain ageing, prevention, earlier detection and treatment.
In 1972, when Professor Henry Brodaty’s father was diagnosed with Alzheimer’s disease at age 52, dementia was a condition Australians were barely speaking about. There was little support and very few services. No clear pathway for families suddenly confronted by a disease they did not understand. Dementia itself was poorly understood and, in most instances, simply ignored. Henry was 25 years old.
More than three decades later, in 2005, entertainer Don Lane and his family found themselves confronting dementia in a very different Australia. His son, PJ Lane, was a young professional basketballer trying to understand what was happening to his larger-than-life father.
By then, Alzheimer's disease had become a name Australians recognised. There were specialists, as well as research and support organisations. However, recognition did not necessarily make dementia easy to talk about. PJ's family kept Don's condition intensely private. At the Logies in 2009, a reporter asked PJ on air how his father was doing. PJ replied that he was doing fine, despite knowing he wasn't.
"Silence was kind of the whole strategy," says PJ.
Then come Adelaide and Lucinda Miller, another generation again. When their Nan was diagnosed in 2018, they did not hide it. Visiting her nursing home became part of family life and they spoke openly about dementia. Yet they discovered that even openness has its limits.
People were able to talk about memory loss. It was much harder to talk about showering and feeding someone, distress, mood changes and the intimate realities of caring. Their conversations, they say, could become a dementia "highlight reel", with the more comfortable parts of the experience shared while the confronting realities remained largely unspoken.
Three families across three very different generations, with three different experiences. And perhaps one uncomfortable question for Australia: Have we actually removed the stigma around dementia - or have we simply become better at talking around it?
Today, 21st September, is World Alzheimer’s Day, and it is undeniable that there has been extraordinary progress since 1972. Henry Brodaty's own life is evidence of it. His father's diagnosis became the catalyst for a career that helped move dementia from the margins of Australian medicine towards the centre of research, care and public health. He helped establish organisations nationally and internationally, co-founded UNSW Sydney’s Centre for Healthy Brain Ageing (CHeBA) and has spent decades advancing dementia diagnosis, care, risk reduction and prevention.
In January of this year, that lifetime of work was acknowledged when Professor Brodaty was named the 2026 Senior Australian of the Year. His description of the journey is poignant: “Over four decades, Australia has moved from hopelessness to hope. From stigma to science." But science does not automatically extinguish stigma.
PJ’s family protected Don by keeping his diagnosis from public view. Visitors were restricted partly because they did not want the story reaching the media, and PJ was navigating much of the experience without a roadmap.
"I was 24 years old going through it, and there wasn't anyone really helping me figure out what to do or say.”
"The only person who really knew what he was talking about at the time was Henry Brodaty," PJ says.
Today, Adelaide and Lucinda encounter something different. People understand that memory loss is part of dementia. Yet Adelaide and Lucinda have watched people speak about their Nan in front of her as though she were no longer there. In public, when their Nan became distressed or confused, strangers sometimes appeared uncomfortable and looked to the sisters to intervene.
That is stigma in a more contemporary form. Not so much that we don't talk about dementia, but that we don't always know how to be around dementia.
When a diagnosis becomes an identity
That distinction matters because perhaps the most persistent stigma is also one of the quietest: the moment a person ceases to be Don, or Nan, or Dad, or Nana, and becomes simply a dementia patient.
PJ remembers that transition happening frighteningly quickly when his father moved into high care and then into a wheelchair. Suddenly, PJ says, it felt as though his father had become "someone with dementia".
The significance of that moment goes beyond one family. Stigma can reveal itself not only in what society says about dementia, but in how quickly someone's world can contract after diagnosis.
It was something Adelaide and Lucinda began noticing well beyond their own family as they started work on their documentary, Nansie.
"As we were making the film, we realised there weren't many other young people visiting nursing homes," the sisters said.
"When we spoke to friends, many admitted they were afraid. They'd say, 'I don't know how to talk to someone with dementia,' or 'They're going to forget me anyway, so what's the point?'
That question - what is the point if they will forget? - gets to the heart of one of the misconceptions that continues to distance people from those living with dementia.
Henry gave the sisters a different way of thinking about it during an interview for Nansie in 2021. His advice stayed with them – the memory may fade but the emotional response can linger.
For Adelaide and Lucinda, that idea became a powerful reminder that memory is not the only measure of connection. And even as their Nan's dementia has progressed, they continue to find ways of reaching her.
“When Nan is upset or scared, we bring in music,” Lucinda explains. “She doesn’t remember my name anymore, but she remembers the songs we sing. Music is the thing that has lasted the longest.”
It points towards perhaps the next great challenge in dismantling dementia stigma.
We have spent decades informing Australians how to recognise dementia. Now we need to become much better at educating Australians how to remain connected to the person living with it.
Making the private public
What makes these three stories powerful is that none has allowed dementia to remain solely a private family experience. For Henry, his father's diagnosis redirected his professional life. Research, psychiatry, advocacy, the establishment of Alzheimer's Associations and CHeBA, and now his platform as 2026 Senior Australian of the Year have all become ways of changing what the next family experiences. His focus now extends beyond treatment: he wants Australia to adopt a national healthy brain promotion program and people to think about brain health throughout their lives.
For PJ, what was once fiercely private has become something he talks about to help others, including through his show ‘I Love Your Faces’.
For Adelaide and Lucinda, sharing their family's story became about more than documenting their Nan's experience. As they opened up, other young carers and families shared their stories in return - a connection through vulnerability the sisters describe as one of the most powerful parts of making the film.
And they believe the wider conversation is changing too.
"Over the last decade, we've seen the conversation around dementia become so much broader," Adelaide says. "More families are talking about it, more young people are engaging with it and there's a growing understanding that dementia affects entire communities, not just individuals. Seeing those conversations happen gives us real hope."
That shift matters because dementia stigma is not dismantled by awareness campaigns alone. It changes when dementia begins appearing in everyday life - in films, public forums, family conversations, schools, workplaces, sport and popular culture.
Across three generations, the methods have changed. The objective has not: make dementia easier to talk about and make the people living with it harder to overlook.
More than 50 years after dementia entered Henry Brodaty's family, the story has moved from silence, to sharing, to helping the next family.
It is a measure of how far Australia has come - and how far there is still to go.
This World Alzheimer’s Day CHeBA is calling for all Australians to donate a dollar or more to support our vision of a future where Australians can age with healthier brains, where prevention is possible, where early detection enables timely treatment and where fewer families experience the devastating impact of dementia. We are ambitious about the brain health of Australians, and we want every Australian to be part of that future.
Donate to DOLLAR FOR DEMENTIA: https://www.dollarfordementia.org/
Contact details:
Heidi Douglass
0431624320
