For many Australians living with dementia, the road to receiving a diagnosis is long and complex, and it’s women who are more likely to be caring for their loved ones with the condition.
Fewer than half of people living with dementia received a diagnosis within the first year of noticing symptoms, while almost one-third of carers spent 70 hours or more each week caring for someone living with dementia.
These are some of the key findings from the Australian Institute of Health and Welfare’s (AIHW) Living with Dementia Survey, which provides insights into the experiences of people living with dementia and the informal carers who support them.
Some of the main barriers to diagnosis include delays in seeking advice because symptoms were not associated with dementia, concerns about the consequences of diagnosis and a reluctance to acknowledge possible dementia, delays in tests and specialist appointments.
Often, symptoms are attributed to other causes, the survey noted.
It’s predicted the number of Australians living with dementia will more than double to over one million people in 40 years, with 662,000 women and 390,000 men expected tol have dementia in 2065.
Nearly two-thirds (63 per cent) of Australians with dementia are women. Dementia is the leading cause of death for Australian women.
“Dementia is one of Australia’s biggest health and welfare challenges, with nearly 459,000 Australians estimated to be living with dementia in 2026 and that number expected to exceed 1 million over the next 35 years,” AIHW spokesperson Bronte O’Donnell said.
“These findings bring the voices of people living with dementia and their carers to Australia’s national evidence base, helping us better understand not just the scale of dementia, but how it affects people’s everyday lives.”
In positive news, around three in four people with dementia said they were treated respectfully by health professionals.
More than three in five people said a diagnosis helped them understand their symptoms. More than half said it supported planning and decision-making, and close to half said it helped them access support.
People living with dementia also noted that knowing they had dementia reduced the sense of control they have over their lives, with two in five people feeling this way.
“Many people living with dementia reported positive wellbeing and support from family and friends, yet the survey also highlighted that navigating support services can be challenging,” O’Donnell said.
“While 3 in 5 people received information about available services soon after diagnosis, only 2 in 5 found it easy or very easy to find, apply for and book support services. This reinforces how important clear information, coordinated support and easier pathways into services can be for people navigating life after a dementia diagnosis.”
The life of carers
In Australia, 73 per cent of people who care for someone living with dementia are women. Just over half of carers (52 per cent) are retired, while 31 per cent were in paid employment.
Most carers, and especially women, reported low wellbeing, with around 60 per cent saying they do not have enough time for their own self-care or social activities. More than seven in 10 women and six in 10 men reported feeling overwhelmed by their responsibilities.
Nearly half said some family relationships had deteriorated since they began caring.
“Carers provide extraordinary levels of support for people living with dementia, while also managing work and family responsibilities, as well as their own health,” O’Donnell said.
“Survey findings make it clear that supporting people living with dementia must also mean supporting the people who care for them.”
Carers also reported difficulties navigating how to access services and support. Nearly half of carers said they had encountered complicated application processes, extended waiting times (42 per cent), difficulty finding quality services (39 per cent) and lack of available services (38 per cent).