New national survey findings show that while many Australians living with dementia report positive wellbeing and support from family and friends, the pathway to diagnosis can be complex and support services can be difficult to navigate.
The Australian Institute of Health and Welfare's (AIHW) Living with Dementia Survey provides new insights into the experiences of people living with dementia in the community and the informal carers who support them.
Conducted between May 2025 and January 2026, the survey program captured responses from 266 people living with dementia and 1,648 carers.
'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.'
Experiences of people living with dementia
The survey found that the pathway to a dementia diagnosis can be long and complex. Three in 5 people living with dementia reported receiving a diagnosis within 3 years of first noticing symptoms, but fewer than half reported receiving a diagnosis within the first year.
Barriers included delays in seeking advice because symptoms were not associated with dementia, concerns about the consequences of diagnosis, reluctance to acknowledge possible dementia, delays in tests and specialist appointments, symptoms being attributed to other causes, and appointment costs.
Despite this, people living with dementia also reported positive aspects of their diagnostic experience.
Around 3 in 4 people said they were treated respectfully by health professionals. More than 3 in 5 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 therapies and support.
At the same time, around 2 in 5 felt that knowing they had dementia reduced their sense of control over their lives.
'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,' Ms 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.'
Experiences of carers
The survey highlights the significant impact dementia also has on their families and carers, and the breadth of support they provide.
More than 8 in 10 participating carers identified as the primary carer of someone living with dementia, and around half provided at least 40 hours of care each week.
Almost one-third spent 70 hours or more each week caring for someone living with dementia.
Many carers reported not having enough time for self-care or social activities. More than 7 in 10 women and 6 in 10 men reported feeling overwhelmed by their responsibilities. Nearly half said some family relationships had deteriorated since they began caring.
Around two-thirds of carers recorded low wellbeing, and those providing 70 hours or more of care each week reported lower levels of wellbeing than those providing care for fewer hours.
Over the previous 12 months, around 3 in 5 participating carers contacted My Aged Care, half contacted Dementia Australia, and more than 2 in 5 contacted Carer Gateway.
Carers reported encountering complicated application processes (49%), extended waiting times (42%), difficulty finding quality services (39%) and lack of available services (38%).
'Carers provide extraordinary levels of support for people living with dementia, while also managing work and family responsibilities, as well as their own health,' Ms O'Donnell said.
'Survey findings make it clear that supporting people living with dementia must also mean supporting the people who care for them.'
The Living with Dementia Survey provides new evidence to help address important data gaps and support implementation of the National Dementia Action Plan 2024-2034.
