Looking back, Isabelle Burke suspects her mother’s condition had been progressing for many years before it was finally diagnosed.

Even as a child she knew her mother was unwell. Christine O’Brien regularly saw a doctor and psychologist to manage what they believed were symptoms of anxiety and depression. Ms Burke recalls thinking “she’s always going to the doctor, so surely she’s being cared for”.

It wasn’t until a friend noticed Ms O’Brien’s disjointed speech and took her to a hospital emergency department that she was finally diagnosed with younger-onset dementia and Ms Burke, aged just 20, became her primary carer.

“Her GP was shocked when she found out Mum had been diagnosed with Alzheimer’s disease,” recalls Ms Burke, now 25. “So I thought, ‘Well, if you’re shocked then obviously it was never on your radar’.”

Her mother died last year, aged just 59.

There are presently almost 460,000 Australians living with dementia, and their ranks are growing by an estimated 250 cases every day. In the absence of a medical breakthrough, the number is expected to hit 590,000 by 2028, and be well over 1 million cases by 2058, according to projections prepared on behalf of Dementia Australia.

The urgency of grappling with the situation was highlighted at sittings of the Royal Commission into Aged Care in Melbourne last year.

Professor James Vickers, a dementia researcher at the University of Tasmania, told the commission there was “a national emergency around the understanding of dementia”. Universities, the vocational sector and service providers were not adequately preparing healthcare professionals to care for people with dementia, he said, calling for an education and training “blitz”.

The National Ageing Research Institute has voiced similar concerns. The institute’s director, Associate Professor Briony Dow, said there was “poor dementia literacy” in Australia’s health system.

“Direct-care workers receive very little training in dementia care,” she said, despite the fact dementia is the leading cause of disability in older Australians.

Motiviated by her first-hand experience of the shortcomings of Australia’s dementia care response, Isabelle Burke is these days a dementia advocate. She’s particularly energised around raising awareness of younger-onset dementia so that healthcare professionals recognise the signs.

An earlier diagnosis would have helped her family better understand and support their mother, and better prepare for the future, she says.

By the time she was diagnosed, Ms O’Brien required full-time care. Despite only being in her 50s, she was moved into an aged care facility.

“There weren’t a lot of [other] options,” says Ms Burke, “particularly for someone with dementia”.

Ms Burke says she fought “a lot of battles” to improve the care her mother received at the facility. A common problem was lack of stimulation.

“Aged care is only about keeping people comfortable, or just helping them go along and watching them slowly deteriorate. … people with dementia can learn, and we can teach them how to do things.”

Ms Burke is critical of the facility’s reactive, rather than proactive, approach to care.

“They just wait till people have soiled themselves and then take them to the toilet, rather than figuring out what time of day they might need to go.”

Ms Burke says more anticipation of residents’ needs could help with rehabilitation, preventing deterioration and symptom management, as many dementia symptoms were emotional responses or reactions to the physical environment.

“The person who’s saying something over and over and over again, that’s just a response to a different need that we can’t always recognise,” she says. “Because they’re not able to communicate it to us eloquently we don’t see it, so we just try to shut them up.”

Improving staff ratios in aged care could be an important step towards fixing these problems, Ms Burke argues, but only if such a move is accompanied by the introduction of some minimum training requirements.

“The training is so lacklustre,” she says. “That’s why whenever I would make a complaint to the facility I would do my best to get them to understand that I was making a complaint to management.

“I can’t take it out on the poor, lovely girl from the Philippines who is just trying her best to help my mum, if she hasn’t even been trained how to do it.”

[F]or Tara McDonald, a 39-year-old North Melbourne woman, a lack of suitable care options in Victoria forced her family to look interstate when the decline in her father’s condition made it impossible for him to live at home any longer.

Jim McDonald, another person living with Alzheimer’s, was placed into care a year ago, just before his 70th birthday.

During a stay in respite earlier in the year, it quickly became clear that Mr McDonald – who enjoyed being active – would not be happy in an aged care facility.

“He was like a caged lion,” Ms McDonald recalls.

“They put everybody in front of the TV and then watch TV. Or they’ll listen to music. They’re always sitting … but you’d be lucky to get Dad to sit for five minutes.”

Looking far and wide for alternatives, Ms McDonald’s family discovered a facility near Brisbane which promised a novel care model catering to people with younger-onset dementia and others with complex care needs.

Residents live in shared houses and are free to set their own schedules for the day, with access to shops, a café and cinema. It appeared to be the answer to her father’s needs, but sending him to Queensland was a fraught decision. Most of his family live around Melbourne, though Mr McDonald no longer recognised them.

Ultimately it was decided to send him north so “he could live the best life that he could possibly live”.

Ms McDonald has kept up flying visits to her father a couple of times a month, although due to Covid-19 travel restrictions has not been able to see him since February. Although the Brisbane home was chosen in his best interests, she says she feels guilty that she can not spend more time with him. “It’s been really hard for me. But it’s 15 million times harder for Dad.”

Professor Dow says that in the long term Australia needs to develop more creatively designed aged-care options. She’s called for facilities that would “enable older people to fully engage with and participate in the broader community”, and allow their “voices and stories” to be heard.

The immediate challenge, says Professor Dow, has been improving the reputation of the aged care industry. “A great deal needs to be done to make the aged care sector a more attractive career choice.”

Her suggestions included better pay for aged care workers, better support and supervision, and better training, especially in how to care for people living with dementia.

“This costs money,” she says. “So, as a society, we need to decide whether we are prepared to invest in the care and wellbeing of our older citizens.”

* Submissions to the Royal Commission into Aged Care, which had been due to report by November this year, have now been extended and hearings suspended due to the Covid-19 emergency. Meanwhile the chair of the Royal Commission, Tony Pagone QC, has issued a statement a statement of concern for the isolation of Australians in care due to the emergency.