Australia has become far more willing to talk about dementia over the past 50 years, but families affected by the condition say greater awareness has not necessarily translated into a better understanding of how to communicate with and include people living with dementia.
The issue is being highlighted on World Alzheimer’s Day through the experiences of three Australian families whose encounters with dementia span more than five decades.
Professor Henry Brodaty’s father was diagnosed with Alzheimer’s disease in 1972, when Brodaty was 25. At the time, dementia was poorly understood, rarely discussed and associated with limited support for families.
More than 30 years later, entertainer Don Lane was diagnosed with dementia. His son, PJ Lane, was a young professional basketballer at the time and said his family largely kept the diagnosis private.
“Silence was kind of the whole strategy,” PJ said.
The family was concerned about the diagnosis becoming public, with visitors restricted partly because of fears the media would find out. PJ said he was trying to navigate his father’s illness without much guidance.
“I was 24 years old going through it, and there wasn’t anyone really helping me figure out what to do or say,” he said.
By the time Adelaide and Lucinda Miller’s grandmother was diagnosed in 2018, dementia was a much more familiar subject in Australian society. The sisters chose to speak openly about their grandmother and incorporated their experiences into their documentary Nansie.
However, they found that greater openness did not necessarily mean people understood the more difficult aspects of dementia.
People were generally comfortable discussing memory loss, but conversations became more difficult when they involved changes in behaviour, distress, personal care and the realities of looking after someone with dementia.
The sisters also noticed people sometimes spoke about their grandmother in front of her as though she were no longer able to participate in the conversation.
That reflects a different form of stigma from the secrecy experienced by previous generations. Rather than avoiding dementia altogether, people may acknowledge the condition while still being uncertain about how to interact with the person living with it.
The sisters said they encountered people who were afraid of visiting nursing homes or talking to someone with dementia because they did not know what to say.
Some questioned the value of maintaining relationships when the person with dementia might eventually forget them.
Professor Brodaty told the sisters during an interview for Nansie that although memory may fade, a person’s emotional response can remain.
That has influenced how they approach their relationship with their grandmother as her dementia has progressed.
Music has become one way of maintaining that connection. Lucinda said her grandmother no longer remembers her name, but still responds to songs they have shared.
The experiences point to a shift in the way dementia is discussed, from an illness that was once largely hidden to one that is increasingly part of public conversation.
Professor Brodaty has spent much of his career working in dementia research, care and prevention after his father’s diagnosis. He helped establish the Centre for Healthy Brain Ageing at UNSW Sydney and was named Senior Australian of the Year in 2026.
He is now advocating for a national healthy brain promotion program, arguing that Australians should be encouraged to consider brain health throughout their lives rather than only after cognitive problems emerge.
The three families’ experiences also illustrate how the consequences of dementia extend beyond the person diagnosed.
For PJ, his father’s illness was initially something the family tried to protect from public attention. He now speaks about the experience publicly, including through his show I Love Your Faces.
For Adelaide and Lucinda, making Nansie led to conversations with other young people and families affected by dementia. They said sharing their own experience encouraged others to talk about theirs.
The Centre for Healthy Brain Ageing says the next stage of dementia awareness needs to focus not only on recognising symptoms and understanding the condition, but also on maintaining relationships and including people living with dementia in everyday life.
The centre is using World Alzheimer’s Day to launch its Dollar for Dementia campaign, seeking donations for research into healthier brain ageing, prevention, early detection and treatment.
For families who have experienced dementia across different generations, the change in public attitudes is significant. But their experiences suggest that reducing stigma involves more than making dementia easier to discuss. It also requires people to continue seeing the person behind the diagnosis and finding ways to remain connected as the condition progresses.
