New research released for Dementia Action Week shows Australians recognise dementia, but many know little about the condition or feel comfortable discussing it.
Dementia has become Australia’s leading cause of death, yet new research suggests the condition remains poorly understood and is still not discussed openly enough.
Research conducted by YouGov and commissioned by Dementia Australia found seven in 10 respondents believed Australians did not speak openly enough about dementia.
Although almost every respondent had heard of dementia, more than half reported having little or no knowledge of the condition. Only one in 10 respondents said they knew a lot about it.
The findings were released to coincide with Dementia Action Week, held from September 21 to 27, and World Alzheimer’s Day on September 21.
Dementia Australia chief executive Professor Tanya Buchanan said the results highlighted the need for a national conversation that increased understanding and reduced the stigma surrounding dementia.
“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,” Professor Buchanan said.
Dementia, including Alzheimer’s disease, accounted for more than 17,500 Australian deaths during 2024. It overtook ischaemic heart disease as the country’s leading cause of death.
Dementia Australia estimates 446,500 Australians are living with dementia during 2026. This includes about 29,000 people living with young onset dementia, which describes dementia diagnosed before the age of 65.
Without a significant medical breakthrough, the total number of Australians living with dementia is projected to exceed one million by 2065.
However, dementia is not one specific disease. It is a broad term describing a collection of symptoms caused by disorders that affect the brain.
These symptoms may influence memory, thinking, behaviour, communication, judgement and a person’s ability to complete everyday activities. Alzheimer’s disease is the most common cause of dementia.
While dementia becomes more common with age, it is not a normal or inevitable part of ageing. It can also affect younger adults and, in rare cases, children and teenagers.
Professor Buchanan said keeping dementia out of everyday conversations could have consequences that extended far beyond the person receiving a diagnosis.
“When dementia stays out of the national conversation, the cost impacts more than the individual,” she said.
“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 Australians discussed skin cancer and sun safety, mental health and heart health more openly than dementia.
Professor Buchanan said national campaigns and community conversations had successfully improved awareness in those areas. Messages encouraging sun protection, mental health check-ins and better heart health had become widely recognised.
“These conversations have made a real difference,” she said.
“But with dementia, we’re not there yet, and now is the time to start talking.”
Dementia Australia believes greater public understanding can help people recognise possible warning signs, seek professional advice and connect with appropriate services.
Better awareness can also challenge the mistaken belief that a diagnosis immediately removes a person’s independence, abilities or right to participate in decisions about their life.
Many people living with dementia continue working, travelling, volunteering, maintaining relationships and contributing to their communities. Their abilities, needs and experiences vary considerably.
The research also revealed the continuing effects of stigma, exclusion and discrimination.
Among respondents with a personal connection to dementia, eight in 10 said they or someone they knew had experienced stigma, disrespect, exclusion or unequal treatment.
Experiences included assumptions about what somebody living with dementia could or could not do. Others involved people being excluded from social activities or conversations.
These attitudes can discourage people from discussing symptoms or seeking an assessment. They can also leave individuals and their families feeling isolated at a time when understanding and community support become particularly important.
Professor Buchanan said open and respectful conversations could help dismantle stigma and create a more welcoming and inclusive Australia.
Dementia Australia Advocate Gina Callan, who lives with dementia, said conversations did not need to be grounded in professional expertise to be meaningful.
“Curiosity encourages conversations,” Ms Callan said.
“Asking questions, listening and being open to different experiences can help build understanding and reduce the stigma that surrounds dementia.”
She said spending time with people who lived with dementia could help others understand what they wanted the community to know.
It could also provide opportunities to ask respectful questions that people might otherwise feel hesitant or uncomfortable raising.
Beginning a conversation can be as simple as asking a person how they are feeling, listening without interrupting and avoiding assumptions about their abilities.
People should speak directly to the person living with dementia rather than automatically directing questions to a family member, friend or carer.
Patience can also make an important difference. A person may need additional time to process information, recall a word or respond to a question.
Using clear language, reducing background noise and discussing one topic at a time can help create a more comfortable conversation. However, people should avoid speaking in a childish or patronising manner.
Dementia Australia says every person’s experience is different. Therefore, the person living with dementia should remain central to decisions affecting their care, activities and daily life wherever possible.
The organisation is asking families, workplaces, community groups, sporting clubs and service providers to join the national conversation during Dementia Action Week.
These discussions can help communities identify practical ways to become more dementia-friendly. Changes may include clearer signs, quieter environments, patient customer service and greater flexibility when someone needs assistance.
They can also remind people living with dementia and their carers that support is available and that they do not have to manage the challenges of a diagnosis alone.
Dementia Australia provides information, education and support for people living with dementia, their families and carers. It also advocates for better services, research, policy and community inclusion.
Anyone concerned about changes to their own memory or thinking, or changes experienced by someone close to them, should seek advice from a qualified health professional.
Memory problems can have many possible causes and do not automatically mean someone has dementia. However, obtaining professional advice can help identify what is happening and determine whether further assessment is required.
Dementia Action Week is intended to begin conversations that continue beyond the campaign itself.
Dementia Australia says thousands of smaller conversations in homes, workplaces, medical practices and community organisations can contribute to a broader national change.
Every respectful conversation can improve understanding, challenge misconceptions and reassure someone affected by dementia that they remain valued and included.
Information about Dementia Action Week and suggestions for starting conversations are available at dementia.org.au/get-involved/dementia-action-week.
The National Dementia Helpline provides free and confidential information, advice and support to people living with dementia, families, carers and anyone concerned about dementia.
The helpline is available 24 hours a day, seven days a week, on 1800 100 500.
