Landmark survey reveals Australians face years-long waits for dementia diagnosis

Less than half diagnosed in first year; experts urge governments to act on findings

By LineZotpaper

Published21 September 2026

Read Time3 min

A landmark national survey has found that fewer than half of Australians living with dementia receive a diagnosis within the first year of symptoms, with many facing delays of three years or more due to misattributed symptoms and limited access to specialists, prompting urgent calls for healthcare reform.

The Living with Dementia report, the first of its kind to survey Australians with dementia and their carers directly, has exposed significant gaps in diagnosis and post-diagnosis care. Published by the Australian Institute of Health and Welfare, the survey gathered responses from 266 people living with dementia in the community and over 1,600 carers between 2025 and January this year.

Dementia is now the leading cause of death in Australia, and estimates project one million Australians will be living with the condition over the next 35 years, making it what many experts call the defining health crisis of the 21st century.

The survey found that getting a diagnosis is often a complicated process. Around one-third of people with dementia said they did not associate their symptoms with the condition. One 68-year-old participant recalled: "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."

Seeking help did not always speed things up. Respondents reported delays accessing specialist appointments and tests, and some GPs attributed symptoms to other causes. Research has previously shown that dementia patients, particularly women, are often misdiagnosed with depression or stress. A 59-year-old participant said: "I'd raised this with my GP and I had the usual 'it's probably menopause or your chronic fatigue syndrome'."

Dementia Australia's Kaele Stokes said too often healthcare professionals displayed a sense of "nihilism" and avoided discussing dementia with patients. "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 unacceptable that two in five people waited 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," she said.

The survey also found that about 40 per cent of respondents received no information about support services after their diagnosis. Although most described their diagnosis as a positive experience, some felt it was impersonal and lacked compassion. The daughter of one person living with dementia said: "When we got the diagnosis, we got a couple of different brochures and things. That was probably it. There was no referring back to the doctor. There was no 'these are the next steps'."

Dr Jeon noted that clinicians often did not know what services were available, leading many to miss out on important rehabilitation.

Experts have urged governments and healthcare professionals to pay close attention to the findings and improve both diagnostic pathways and support services for the growing number of Australians affected by dementia.

Analysis

Why This Matters

One million Australians are expected to be living with dementia over the next 35 years, making delays in diagnosis a growing public health crisis.
Late or missed diagnoses prevent patients from accessing treatments that could manage symptoms and from planning their future care.
The survey provides the first comprehensive data on the lived experience of Australians with dementia, giving policymakers a clear mandate for reform.

Background

Dementia is a progressive neurological condition that affects memory, thinking, and behaviour. It is the leading cause of death in Australia. There is no single test for dementia; diagnosis typically involves cognitive assessments, brain imaging, and ruling out other conditions. Previous research has highlighted that women are particularly vulnerable to misdiagnosis, with symptoms often attributed to depression, stress, or menopause. The Living with Dementia report is the first national survey to directly capture the experiences of people with dementia and their carers, covering diagnosis, support, and ongoing care.

Key Perspectives

People living with dementia and their carers: Need faster, more accurate diagnoses and clear information about available support services. Many feel left in limbo for years and want compassion and practical next steps from healthcare professionals. Dementia experts and researchers: Led by figures such as Kaele Stokes of Dementia Australia and Professor Yun-Hee Jeon, they argue that nihilism and misconceptions about dementia being an inevitable part of aging must be overcome. They call for better GP training, streamlined referral pathways, and post-diagnosis care coordination. Healthcare providers and GPs: Face challenges with limited specialist availability and lack of awareness about dementia services. The survey suggests some GPs may be reluctant to discuss dementia or misattribute symptoms, though systemic barriers—such as appointment time constraints and referral delays—are also at play.

What to Watch

Whether federal and state governments adopt specific recommendations from the survey to reduce diagnosis times and improve post-diagnosis support.
Uptake of dementia rehabilitation services (re-ablement) and whether the 40 per cent of patients who receive no support information are reached.
Future updates to the survey to track progress as the projected one million Australians with dementia approaches.

Sources

Australians waiting years for dementia diagnoses, landmark survey finds — Just In