The gap in dementia care support isn’t primarily a gap in awareness, it’s a gap in access. New AIHW survey data paints a picture of carers who broadly know what’s out there, but who hit a wall of paperwork, waiting lists and patchy availability trying to actually use it.
The Living with Dementia Carer Survey captured responses from 1,648 carers of people living with dementia between May 2025 and January 2026.
Most carers (78%) said they were aware of available services and supports. But that awareness thins out fast the further along the process you go. 66% said finding information about services was relatively easy, while only 51% said actually accessing services in their area was easy.
Just 48% said they knew how to access services to support them in their caring role, and only 43% felt they’d received enough guidance to manage the challenges of dementia caregiving.
The top barriers, in carers’ own words
Asked directly what got in the way, carers most commonly pointed to the complexity of the application process (50% of women, 44% of men), followed by long wait times for local services (44% of women, 38% of men) and difficulty finding quality options (41% of women, 34% of men). A lack of available services in their local area was close behind (39% of women, 33% of men).
One carer summed up the administrative fatigue bluntly: “I found the repetition of filling in the same forms… I already filled all that information in.”
Waiting for the things that matter most
Wait times weren’t uniform. Carers could get some things, such as cleaning, transport and emergency respite, without delay in the majority of cases. But the services tied to actual care and assessment lagged. Most carers seeking an Aged Care Assessment Team (ACAT) assessment waited up to 12 months, and a small but real group, 12% for in-home overnight respite and 8% for out-of-home overnight respite, waited more than two years.
The services carers don’t even know exist
Beyond access barriers, there’s a straightforward information gap for some services. More than half of carers (56%) were unaware of the Dementia Behaviour Management Advisory Service (DBMAS), a free service specifically designed to help with challenging dementia-related behaviours. A quarter didn’t know in-home overnight respite care existed at all.
Training resources tell a similar story. Among carers aware of things like the Understanding Dementia MOOC, Dementia Australia’s Living with Dementia course and carer support groups, satisfaction was high, with 79 to 88% finding them useful. But a large share of carers were simply aware of these resources without ever using them, and others hadn’t heard of them at all.
A system that leaves people fighting on their own
One quote captures the stakes when support systems fail to connect. After her husband’s condition deteriorated, one spouse described calling My Aged Care only to be told he “doesn’t need any care” based on an assessment made months earlier: “I then got on to My Aged Care, and I rang them and… they said, ‘Oh, he’s regarded as someone who doesn’t need further care.’ I said, excuse me?”
Carers are already managing 40, 60, 70 or more hours a week of unpaid care. For many, getting help means also becoming a case manager: navigating complex applications, long waits and assessments that don’t keep pace with a person’s changing needs.
