Canberra families dealing with dementia can get lost between health, aged-care and community services. Next February, Canberra will host a summit to design a local model for a dementia navigator: someone who would walk alongside someone with dementia and their carers from diagnosis through every stage of the journey.

“We would give them a single point of contact – someone advocating on behalf of them, knowing their specific situation and aligning them with the most appropriate services,” summit co-chair Shelley Thomson said.

Dementia is Australia’s leading cause of death: more than 6,300 Canberrans are estimated to have the condition, and that number is projected to almost double to 12,300 by 2054.

A background paper for the summit argues that the dementia support system lacks continuity (people bounce between disconnected services, with no consistent point of contact); clarity (carers and people with dementia are left to ‘figure it out’ as they go); and compassion (services are transactional, and often inaccessible at the point of need).

An ACT Government framework this year found long waits for specialists and assessments; difficulty accessing respite and suitable residential care; poor communication between services; and carers being forced to navigate a fragmented system. A service map developed from carers’ experiences showed people getting stuck throughout the system.

“People with dementia are not getting the right services at the time that they need it,” summit co-chair Greg Fraser, former CEO of ACT Health and former director of Dementia Australia, said.

The consequences include prolonged hospitalisations and premature admission to residential aged care (over five years, 11 people with dementia remained in hospital for more than a year, the longest for 636 days); duplication and inefficiency across government-funded services; unnecessary distress and decline for people with dementia; carer burnout; and economic loss from unpaid, unsupported care, the background paper states:

“A diagnosis is delivered, often without a clear next step. A carer is left to work out, largely alone, which service to call, which form to fill in, and which door might actually open. Appointments multiply across health, aged care, disability and community systems that don’t talk to each other. Crises — a fall, a hospital admission, a carer at breaking point — become the moments that finally trigger support, rather than the plan that was supposed to prevent them.

“This is not one family’s bad luck. It is the consistent, documented experience of people living with dementia and their carers across the ACT.”

Mr Fraser’s own mother-in-law developed dementia late in life.

“Dementia robs people of their independence and their agency,” he said. “They’re totally reliant on family members and carers to help them make all the decisions that are important: financial, healthcare, whatever.

“She was very vibrant, lots of fun, very definite opinions about a whole range of things, and she just lost all of that. She was wrapped in a cone of silence almost towards the end. She wasn’t making any conversation. She had forgotten who some of her children were.  To see all of that play out is very sad, and it symbolizes what a terrible condition dementia is, because it does basically rob them of their life in a very different way to just about all the other conditions that people have. … People with dementia deserve a far better deal than they’re getting at the moment. Surely we can do better than this.”

Dementia Australia has advocated for a national dementia navigator program – modelling estimates that a $40.5 million national investment for 70 navigators could return $166 million over four years and $188 million over 10 years through avoided hospitalisations, delayed admissions to residential care, and reduced strain on unpaid carers. Navigation models already exist in other areas of health care, including breast cancer.

“It’d be very nice if we didn’t need navigators at all,” Ms Thomson said. “But the reality is that the complexity of the system is not going to change any time soon, and so we need people to talk and navigate through that complexity.”

The ACT Dementia Navigation Summit will be held at the University of Canberra on 9-10 February 2027. The 1.5-day working summit will bring together people with dementia and their carers; clinicians; researchers; government agencies; aged-care providers; and advocacy organisations to build a dementia navigator model for the ACT.

Mr Fraser said participants would consider what qualifications navigators should have; whether they should be based in hospitals or the community; and which organisation should employ them. Workshops will then use real-life scenarios to test how a navigator could work and how to measure success.

The summit is privately funded, and estimated to cost $120,000. Organisers would be keen to hear from anybody in the community who wants to make a donation. For more information, visit https://act-dementia-navigation-summit.eventsairsite.com/