Ever since her beloved husband Robert was diagnosed with dementia six years ago, Margaret MacDonald has found the journey lonely, isolating and, sometimes, frightening.
"He set fire to the kitchen by putting an electric jug on the stove and turning the hotplate on to make a cup of tea," she said, able to smile, now, at the memory.
At the time, it was traumatic. Margaret was exhausted, physically and emotionally. And day by day she was losing her husband of 37 years, her best friend.
"We used to talk together for hours," she said.
Margaret, 76, and Robert, 79, had moved from NSW back to his home town of Canberra after his dementia diagnosis because he wanted to be in familiar surroundings.
The move meant they really didn't access any assistance for at least two years, mainly because they didn't know where to start.
Margaret had a long career as a consultant, used to crafting public policy and dealing with bureaucracy, but even she found the system of trying to get help for Robert - and herself - "totally impenetrable".
"The whole system is designed for people not to use it," she said.
She's not alone in that feeling.
ACT independent senator David Pocock said on Thursday that since he was elected in 2022 he had heard from many Canberrans whose lives had been touched by dementia.
"One thing has really stood out to me - how lost people feel trying to navigate the system," Senator Pocock said.
"It simply doesn't feel designed for people going through one of the most uncertain and sometimes traumatic periods of their lives.
"People are being left to navigate health, aged care, disability and community services and we know they are falling through the cracks."
A band of switched-on, connected and dedicated volunteers in the ACT is working to change that.
Led by a former chief executive of ACT Health, Greg Fraser, and local healthcare professional, Shelley Thomson, the group is single-handedly organising a dementia summit in Canberra in February 2027.
The Dementia Navigation Summit will be held at the University of Canberra on February 9 and 10 and has already attracted the support of people such as Senator Pocock.
Mr Fraser promised it would not be a talkfest. He had not come out of retirement for nothing.
The summit was about health experts, researchers and people with lived experience of dementia coming together to design a system of "dementia navigators" for the ACT and then lobbying to ensure they become a reality.
A dementia navigator would connect people with dementia and their carers to services they needed at the time that they needed them and where they needed them.
Mr Fraser said dementia was the leading cause of death in Australia, with an estimated 446,500 people living with dementia across the nation and about 6300 of them in the ACT.
About $6 billion was spent annually on dementia care but the result was still a system that was confusing and often overwhelming, he said.
"It really is quite horrendous, as far as I'm concerned," Mr Fraser said.
Shelley Thomson said she was volunteering her time to get the summit up and running because "it was a very personal cause". Her mother-in-law Jean, 89, was diagnosed with dementia 10 years ago.
"I work in the sector professionally, I'm well-educated. I found navigating the system with Jean incredibly difficult and still do to this day," Ms Thomson said.
"I think it's really hard for me to imagine what it's like for people who don't have the advantages that I have, to try and manage their way through the system. I suspect that a lot of them don't.
"What would have helped us would have been one person, one person to call, a single point of contact for us that knew Jean's situation and could tell us where to go next and what to expect next. That's what a dementia navigator is."
North Canberra Hospital geriatrician Dr Mary Ann Kulh said a dementia navigator could also help to keep dementia patients out of hospital by assisting them with nutrition, medication and fitness. Some dementia patients ended up stranded in hospital, not because they needed ongoing care but because they had nowhere else to go.
"I saw a patient like that this morning who's been in hospital for 100 days. You can imagine being in the same bed, undergoing the same routine for 100 days. We know of people who've been in hospital for 600 days and it's just not something that should be happening. We're a world-class health service - what is happening?," Dr Kulh said.
The committee organising the Dementia Navigation Summit has received no government funding and raised more than $57,000 to stage the event through sponsorship. Mr Fraser said close to another $60,000 was needed to stage the event.
"I tell you I have some sleepless nights thinking about how we're going to do that. I don't want to let down all of those people who are not getting a good deal out of the current system," he said.
Margaret MacDonald, meanwhile, has slowly had some wins. She's secured two days of respite care for her husband. They both connected with the SPICE (Sustainable Personalised Interventions for Cognition, Care, and Engagement) program which helps people to remain in their homes for longer, and to maximise their quality of life. It also made her feel not so alone.
"I learned other people face the same problems. I wasn't incompetent," she said, with a gentle smile.
