Police were called: husband's plea for better dementia care

Former massage therapist Sue Lyons, 56, is living with young-onset dementia, a condition that affects 30,000 Australians and is on the rise, according to a recent report from the University of Technology Sydney, the University of Sydney and Dementia Law Network.

The mother of two and former massage therapist has struggled with behavioural changes, including aggression, which many aged care workers find difficult to manage, her husband, Craig Macdonald, told The Senior.

During a recent stay at a respite care centre in the Mornington Peninsula, a carer called police after Sue attempted to cross a busy road while out on a supervised walk.

Sue, who had been experiencing symptoms of distress, was taken by the carer to an unfamiliar area in her pyjamas, and was without her hearing aids, when she tried to wander across a highway to some shops, Craig said.

"There was a police cruiser there with the lights flashing, and she was standing in her pyjamas on the foreshore," he said.

"She was just apoplectic at the time. I'd never seen her so upset before."

Since the incident Craig, himself a dementia care nurse, has taken on more caregiving for Sue, reducing external help to to a few hours a day.

"This is part of the problem. The carers working in these areas aren't necessarily trained to do this," Craig said.

"They just need to be trained in how to deal with that."

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Legal experts have called for improved guardrails for Australians living with young-onset dementia, with the Dementia Law Network's report finding police are often called when patients become agitated, as they are physically stronger than older patients.

Four years before she was diagnosed with the life-changing brain condition, Craig knew Sue was not well, as she struggled to find her words and became more emotional.

"There's a really common misdiagnosis of anxiety and depression, which was exactly what happened with my wife," Craig said.

Sue, then 52, agreed to visit a GP in 2021, undergoing a Mini-Mental State Examination, an 11-question quiz used by doctors to assess brain function.

"Sue only answered three questions correctly. The first was 'What day is it?' and we had just dropped our daughter at school on a Monday morning," he said.

"She wasn't able to name the season. It became very obvious.

"It was actually a shock to me that it had progressed as far as it had."

Shortly after receiving a formal diagnosis, Craig put an Enduring Power of Attorney (EPOA) in place, which would have allowed him to make legal and financial decisions on her behalf.

However, Sue's neuropsychologist ruled the EPOA void, determining Sue too incapacitated to make decisions.

This created a number of issues as Craig tried to manage the family's finances, insurance claims, benefits and superannuation, he said.

"We'd get phone calls from Telstra about bills in Sue's name, and they wanted to speak to her verbally, and she wasn't able. She's non-verbal with aphasia," Craig said.

"I couldn't even go in to Centrelink. I would have to take Sue in with me, and we'd sit there together, and I'd be acting on her behalf, even though I didn't have power of attorney."

Reflecting on this period, Craig wishes he was offered better education about the processes involved in caring for a loved one with young-onset dementia.

Craig agrees with the findings of report, that advice for people and families dealing with young-onset dementia needs to be improved.

"You're basically left in the dark, and there's essentially no follow-up and ongoing support at that point."

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