Less than half of Australians living with dementia received a diagnosis in the first year, with crucial early warning signs sometimes missed by health professionals, a landmark new survey has found.

The Living with Dementia report is the first time Australians with dementia and their carers have been surveyed, and experts have urged governments and healthcare professionals to pay close attention to the findings.

Dementia is considered by many to be the defining health crisis of the 21st century and is now the leading cause of death in Australia.

It is estimated one million Australians will be living with the condition over the next 35 years.

The Australian Institute of Health and Welfare surveyed 266 people living with dementia in the community and over 1,600 carers between 2025 and January this year.

It found getting a diagnosis was often a complicated process and many carers were struggling.

There is no single test or pathway to obtain a dementia diagnosis and around one third of people with dementia said they did not associate their symptoms with the condition.

"I didn't think I had a problem. I thought, you know, it's just, I'm forgetting things. I've got a lot on my mind. I was a busy man,"

— said one 68-year-old survey participant.

Seeking help did not always lead to a quick diagnosis, with people reporting delays accessing specialist appointments and tests, or GPs attributing symptoms to causes other than dementia.

Research has previously shown dementia patients, particularly women, are often misdiagnosed with depression or stress.

"I'd raised this with my GP and I had the usual 'it's probably menopause or your chronic fatigue syndrome',"

— said one 59-year-old survey participant.

Dementia Australia's Kaele Stokes said too often healthcare professionals had a sense of "nihilism" and did not want to talk to their patient about dementia.

"There's a sense that dementia is an inevitable part of aging, which it isn't," she said.

Professor of healthy aging at the University of Sydney, Yun-Hee Jeon, said it was not acceptable that two in five people were waiting three years for a diagnosis.

"People are left in limbo and might miss out on accessing drugs that could help manage the symptoms of cognitive impairment or simply the opportunity to plan their future."

Many not accessing dementia re-ablement

About 40 per cent of survey respondents reported not receiving any information about support services after their diagnosis.

Although most said their diagnosis was a positive experience, some felt it was impersonal and lacked compassion.

"When we got the diagnosis, we got a couple of different brochures and things. Like, that was probably it. There was no referring back to the doctor. There was no, like, there was no 'these are the next steps',"

— daughter of someone living with dementia.

Dr Jeon said clinicians often did not know what services were available and people missed out on important rehabilitation.

Only 16 per cent of those surveyed took part in re-ablement programs, which involve goal setting, physical mobility and environmental adaptations so people can maintain independence.

"That's a really low figure when you think about it because it would be one of the best things for many people if they knew this type of program was available," Dr Jeon said.

Less than half of respondents had help from a care coordinator and Dr Stokes said this showed the importance of embedding dementia care navigators in the system.

A dementia care navigator would provide a consistent point of contact throughout someone's dementia journey.

The federal government rejected Dementia Australia's proposal to fund these roles in the most recent federal budget.

"When someone has cancer or diabetes they are automatically connected to a diabetes or cancer nurse and we just don't have the equivalent model for dementia," Dr Stokes said.

Despite the many challenges, nearly half of survey respondents living with dementia reported a high level of wellbeing.

Carers feel socially isolated

Most carers reported low wellbeing and said they felt overwhelmed by their responsibilities, with about 30 per cent spending 70 hours caring per week.

Most said they did not have enough time for their own-self care and felt lonely, and a third said old friends avoided spending time with them if the person living with dementia was present.

"I just had to stop my own personal things that I was doing so that I could be home to look after him. You know, I had to plan. Everything had to be planned,"

— said a spouse of a person living with dementia.

Half said relationships with some family members worsened since they began their caring role.

"This [tension] can come down to financial arrangements, different views about what's best for the person or getting different information from different sources," Dr Jeon said.

She said relationship counselling between family members could be beneficial and respite care was also a critical tool but was often hard to access, especially in regional areas.

Most carers surveyed said the biggest challenge to accessing support, such as respite, was the complexity of application processes.

Many were also not aware of key supports such as the Dementia Behaviour Management Advisory Service, which can help manage psychological changes.

"If every single person living with dementia was requiring a more formal form of aged care or disability support the system wouldn't be able to handle it," Dr Stokes said.

"So it is incredibly important that we provide support to carers."

Advocates hope bigger surveys can be done in the future and can include those living with dementia in residential aged care.

If you or someone you know has questions or concerns contact the National Dementia Australia helpline on 1800 100 500.