Dementia Action Week shines light on stigma, diagnosis and carers

Australia’s dementia population is expected to exceed one million within 35 years, yet new research suggests many people living with the disease and their families continue to face barriers to diagnosis, support and social inclusion.

Released during Dementia Action Week and on World Alzheimer’s Day, new findings from Dementia Australia (DA) and the Australian Institute of Health and Welfare (AIHW) paint a picture of growing awareness of dementia, but persistent challenges remain in relation to understanding, service navigation and stigma.

DA found seven in 10 Australians believe dementia is not discussed openly enough, while more than half reported having little to no knowledge about the condition. Although awareness of dementia was almost universal among survey respondents, only one in 10 said they knew a lot about it.

DA chief Professor Tanya Buchanan said the findings highlighted the need for a broader national conversation.

“Dementia is the leading cause of death in Australia and, with close to half a million Australians living with dementia and this number on the rise, now is absolutely the time to talk about dementia,” she said.

“When dementia stays out of the national conversation, the cost impacts more than the individual. It leaves people alone when they need connection most. Care standards stagnate. The systems that should support people don’t keep pace. Policy attention, research, funding – all of it follows where the national conversation goes.”

The survey found skin cancer, mental health and heart health were all discussed more openly than dementia. It also found eight in 10 respondents who had a personal connection to dementia reported experiencing or witnessing stigma, exclusion, disrespect or unequal treatment.

“Through conversations such as those we’re asking you to have this Dementia Action Week, we can work to dismantle this stigma and instead create a more welcoming and inclusive dementia-friendly Australia,” Professor Buchanan said.

Life after diagnosis

At the same time, the first national Living with Dementia Survey has provided new insight into the experiences of Australians living with dementia and the people who care for them.

Conducted by the AIHW between May 2025 and January 2026, the survey gathered responses from 266 people living with dementia and 1,648 carers.

AIHW spokesperson Bronte O’Donnell said the survey helps reveal the realities behind the statistics.

“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,” she said.

The survey found that obtaining a diagnosis can be a lengthy process. While three in five people living with dementia received a diagnosis within three years of first noticing symptoms, fewer than half were diagnosed within the first year, with more than a quarter waiting more than a year before seeking health advice after noticing symptoms. The most common barriers to diagnosis found in the survey were:

• 32 per cent of people not recognising symptoms as dementia
• 27 per cent were concerned about the consequences of a diagnosis
• 24 per cent were reluctant to acknowledge potential dementia
• 22 per cent experienced delays in testing and specialist appointments
• 18 per cent attributed symptoms to other causes
• 16 per cent of respondents were concerned about the cost of appointments.

Despite these challenges, many respondents reported positive experiences with healthcare professionals. Around three-quarters said they were treated respectfully, while 62 per cent said a diagnosis helped them understand their symptoms and 51 per cent said it helped them plan and make decisions.

However, two in five respondents said knowing they had dementia reduced their sense of control over their lives.

Support available, but difficult to navigate

The AIHW survey also highlighted ongoing challenges in accessing support after diagnosis.

While 60 per cent of people living with dementia reported receiving information about services soon after diagnosis, only 40 per cent found it relatively easy to find, apply for and book support services.

More than half used Dementia Australia and My Aged Care, while nearly half accessed Home Care Packages. Among those who used support services, nearly three-quarters felt the services were appropriate for their needs.

Nevertheless, navigating the system remained a challenge.

“While three in five people received information about available services soon after diagnosis, only two in five found it easy or very easy to find, apply for and book support services,” Ms O’Donnell said.

“This reinforces how important clear information, coordinated support and easier pathways into services can be for people navigating life after a dementia diagnosis.”

Hospital care was another area identified in the survey. Around 41 per cent of people living with dementia reported being admitted to hospital following diagnosis, but fewer than half felt hospital staff understood their dementia-related needs.

The burden on carers

The AIHW survey also revealed the substantial contribution of informal carers, many of whom are providing the equivalent of a full-time workload.

More than eight in 10 participating carers identified as the primary carer for a person living with dementia, while around half provided at least 40 hours of care each week. Almost one-third spent 70 hours or more caring.

The impact on wellbeing was significant.

More than 60 per cent of carers reported not having enough time for personal care or social activities. Most reported feeling overwhelmed by their responsibilities, particularly women.

Nearly half said family relationships had deteriorated since they began caring, while around one-third reported that friends avoided them if the person living with dementia was present.

Around two-thirds of carers recorded low wellbeing.

“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.”

When carers sought assistance, they most commonly contacted My Aged Care, Dementia Australia and Carer Gateway. However, many still reported barriers including complicated application processes (49 per cent), extended waiting times (42 per cent), difficulty finding quality services (39 per cent) and limited service availability (38 per cent).

Breaking the stigma

For people living with dementia, advocates say improving understanding remains just as important as improving services.

Dementia Australia advocate Gina Callan, who lives with dementia, said people do not need specialist expertise to start meaningful conversations.

“Curiosity encourages conversations,” she said.

“Asking questions, listening and being open to different experiences can help build understanding and reduces the stigma that surrounds dementia.

“Spending time with people who live with dementia can help others understand what we want them to know and can help answer the questions they might be too afraid to ask directly.”

This Dementia Action Week, the data shows that while the awareness of dementia has improved, understanding, inclusion and support systems still have a long way to go.