For the first time, Australians living with dementia and the carers who support them have had their voices captured in a genuine national evidence base, and the findings paint a picture of both real resilience and genuine, unmet need.
The Australian Institute of Health and Welfare’s Living with Dementia Survey, conducted between May 2025 and January 2026, captured responses from 266 people living with dementia and 1,648 carers, offering new insight into what everyday life actually looks like once a diagnosis arrives.
AIHW spokesperson Bronte O’Donnell said dementia remains “one of Australia’s biggest health and welfare challenges,” with an estimated 459,000 Australians living with the condition in 2026, a figure expected to exceed one million within the next 35 years. She said the survey brings the genuine voices of people living with dementia and their carers into the national evidence base, helping researchers understand not just the scale of dementia, but “how it affects people’s everyday lives.”
The survey found the pathway to a dementia diagnosis can be genuinely complicated. While three in five people living with dementia reported receiving a diagnosis within three years of first noticing symptoms, fewer than half were diagnosed within the first year.
A number of genuine barriers were identified, including symptoms simply not being associated with dementia early on, concerns about the consequences of a diagnosis, a natural reluctance to acknowledge what might be happening, delays getting tests and specialist appointments, symptoms being attributed to other causes entirely, and the cost of appointments themselves.
Despite these delays, the experience of diagnosis itself was largely positive. Around three in four people said they were treated respectfully by health professionals, more than three in five said the diagnosis helped them understand their symptoms, and more than half said it supported their planning and decision-making. Close to half said it helped them access therapies and support they otherwise wouldn’t have known about.
At the same time, around two in five people said knowing they had dementia reduced their sense of control over their own lives, a genuinely important finding for how support and communication is handled after diagnosis.
Ms O’Donnell said while many people living with dementia reported positive wellbeing and strong support from family and friends, “navigating support services can be challenging.” While three in five people received information about available services soon after diagnosis, only two in five found it easy, or very easy, to actually find, apply for and book that support.
If the survey reveals one thing clearly, it’s the sheer scale of what Australian carers are managing. More than eight in ten participating carers identified as the primary carer for someone living with dementia, and around half were providing at least 40 hours of care every week. Almost one in three were providing 70 hours or more, essentially a full-time job on top of whatever else was already happening in their lives.
Many carers reported having little to no time left for self-care or social activities. More than seven in ten women and six in ten men said they felt genuinely overwhelmed by their responsibilities, and nearly half said some of their family relationships had deteriorated since they began caring.
Perhaps most striking, carers themselves reported poorer wellbeing than the people living with dementia they were caring for. Around two-thirds of carers recorded low wellbeing overall, and those providing 70 hours or more of care each week reported even lower wellbeing than carers doing fewer hours, a clear sign that the sheer volume of caring itself is taking a genuine toll.
Over the previous 12 months, around three in five carers had contacted My Aged Care, half had contacted Dementia Australia, and more than two in five had contacted Carer Gateway. But accessing that support wasn’t always straightforward: carers reported complicated application processes (49 per cent), extended waiting times (42 per cent), difficulty finding quality services (39 per cent), and a genuine lack of available services altogether (38 per cent).
Ms O’Donnell said carers provide “extraordinary levels of support” for people living with dementia, while also juggling work, family and their own health. She said the survey makes clear that “supporting people living with dementia must also mean supporting the people who care for them.”
The Living with Dementia Survey helps address a genuine gap in Australia’s national data, and will support the implementation of the National Dementia Action Plan 2024-2034, the country’s roadmap for improving dementia care, diagnosis and support over the coming decade.
For anyone currently supporting a loved one with dementia, or navigating your own diagnosis, this research offers something genuinely valuable: confirmation that the challenges you may be facing, whether that’s a difficult path to diagnosis, complicated support systems, or the sheer exhaustion of caring, are widely shared, well documented, and increasingly central to how Australia plans to improve dementia care and support going forward.
If you or someone you love is living with dementia, the National Dementia Helpline (1800 100 500) is available 24 hours a day, seven days a week, for free and confidential information and support. Carer Gateway (1800 422 737) also provides dedicated support services for Australian carers.
IMPORTANT LEGAL INFO This article is of a general nature and FYI only, because it doesn’t take into account your personal health requirements or existing medical conditions. That means it’s not personalised health advice and shouldn’t be relied upon as if it is. Before making a health-related decision, you should work out if the info is appropriate for your situation and get professional medical advice.
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So tell us something we don't know! What exactly is going to be done? We need action not more words to define what we (as in dementia suffering families) already know. That Royal Commission has made a broken system worse and more expensive. Navigating it is a nightmare for all concerned. Surely we can simplify the system and make a better effort to stop the current rorts that make it so expensive e.g. $120 hour for house cleaning.
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