Nathan D'Cunha's first lesson about dementia did not happen in a lecture theatre, but through watching his grandmother's health decline in a relatively short amount of time.
Shortly after his grandmother died, his mother started to show similar symptoms. Dr D'Cunha's family quickly found themselves lost in a maze of conflicting advice and scarce information.
Dr D'Cunha said watching his family struggle through mixed messages and a long, confusing path to diagnosis "spurred [him] on into the work that [he does] now", because "there's still many people around Australia getting mixed messages and going through a really long process of receiving a diagnosis".
Data from the Australian Bureau of Statistics shows dementia has become Australia's leading cause of death. About 446,500 Australians live with a form of dementia as of 2026, a figure that is expected to increase to more than 1 million by 2065 without significant intervention.
Now a researcher based at the University of Canberra Hospital, Dr D'Cunha said dementia was a growing problem in Australia - not just for families, but for the health and aged care systems as a whole.
"It's a growing problem in Australia and nationally, particularly in terms of the cost to the health system, especially for people who present in hospital with dementia and the residential care system," he said.
For many people, the moment of diagnosis was not the start of a clear treatment and support journey, but a cliff edge.
"We know for most people it's actually a time of profound uncertainty," Dr D'Cunha said.
"Some people, they get [a] really clear answer ... but in the vast majority of Australia, people [are] often left [not knowing] what to do."
For Dr D'Cunha, one of the most damaging misconceptions was that once someone is diagnosed, "there's nothing that can be done". His mother has now lived with dementia for about 14 years.
"In reality, people can live with dementia for a long time," he said.
"Dementia should be treated like other health conditions, and there should be a pathway to getting support and doing beneficial interventions after a diagnosis."
Although most people associated dementia with forgetfulness, Dr D'Cunha said some forms first show up as changes in walking, balance or behaviour.
Alzheimer's disease accounted for about 60 to 70 per cent of dementia cases, but it was only one of several major types, he said.
Those interventions can be practical and social as much as medical: structured education, peer support and help to keep doing the things people value.
At the University of Canberra Hospital, Dr D'Cunha works on the Spice program, which has been running since late 2022 and has supported nearly 250 people with dementia and 250 care partners.
The program provided people "education, but also engagement, a peer support system", he said - a way to build confidence, stay connected or reconnect with friends and family, and "have some hope for the future".
An analysis by Dementia Australia showed about 1.7 million people in Australia were involved in the care of someone living with dementia.
Dr D'Cunha's mother's diagnosis at 57 is considered young-onset dementia, which affects people between 18 and 65. In 2026, about 29,000 people in Australia live with young-onset dementia, which is expected to rise to about 41,000 by 2054.
But demand far outpaced capacity. There was a long waiting list, and Dr D'Cunha said many people around the ACT and across Australia were still missing out on timely help - especially those who lived alone with dementia, or who had reached crisis point before support was in place.
The federal government's National Dementia Action Plan, released in late 2024, set out goals to improve diagnosis, support, workforce training and data.
Dr D'Cunha welcomed the plan but said it needed sustained investment, including more funding for organisations like Dementia Australia to help people navigate services.
In aged care, he said staff were doing their best but had been constrained by understaffing and routine-driven rather than personal care.
Research from his team showed how important engagement and interaction were for quality of life, particularly for people with dementia, and the need for more dementia-specific training in the workforce.
Above all, Dr D'Cunha wanted people who were worried about memory loss or other changes - in themselves or a loved one - not to wait. Connecting with others going through similar experiences could help people realise they were not alone.
"There is a lot of fear around dementia," he said.
"But to get support in place, and to be able to prepare for the future, I think it's important to see a doctor and see a specialist ... Don't wait until there's a crisis or an event."
