Published 27 August on the Sun Herald, Sydney Morning Herald, Brisbane Times, WA Today and The Age.
Donna Ward has clear, though disappointing, memories of the conversation she had with the doctor when her sociable, creative mother was diagnosed with dementia.
“We had a delightful doctor, but they basically just asked if we had a lawyer and said we should get her affairs in order,” she recalled.
“There was no hope, there was nothing that told us that your mum might live for however much longer and can have a fulfilling life.”
That conversation happened 18 years ago.
Advocacy group Dementia Australia estimates the number of people living with dementia, an umbrella term for many cognitive function diseases, including Alzheimer’s, will double to more than 800,000 in the next 35 years.
Aged care consultant Tamar Krebs, founder of dementia housing organisation Group Homes Australia, said the community needed to reframe how they thought about the condition: these people will need to access healthcare and domestic help, but also shop at supermarkets and partake in recreational activities.
Dementia Australia expects two-thirds of the 800,000 will not live in a nursing home, instead receiving care from loved ones and in-home services.
“If you are diagnosed with diabetes or hypertension, you get a plan to manage that chronic disease,” Krebs said.
“But if you are diagnosed with dementia, doctors might say ‘don’t bother making another appointment, there’s nothing I can do for you’. But these people have many years of life ahead: how do they best manage it?”
Group Homes Australia has received funding from the federal Department of Health and Aged Care to run five-day residential retreats for people recently diagnosed with dementia and their carers, to help answer that question.
The organisation was funded to hold 30 such retreats over three years but has applied to bring some forward to this financial year, due to demand.
“Instead of focusing on what the person can’t do, we need to look at what they can,” Krebs said. “If they enjoyed cooking in the past, they may still be able to do some of that, but it needs to be modified.”
After spending the better part of two decades navigating the care system, Ward is managing the program.
“The peer support is so important … maybe someone doesn’t have the courage to ask the neurologist or the carer a question, but they hear someone else, so they speak out,” she said.
“A big part of the retreat is normalising this and saying there is no shame in it.”
Brendan, a 63-year-old Sydneysider whose surname has been withheld for privacy reasons, was diagnosed with Alzheimer’s this year. Working in sales, he saw a neurologist on his wife Jenny’s recommendation.
“In lockdown, we were both working from home so I could see some of the struggles he was having at his job, I could see a bit of a change in his mood; that he was troubled and something wasn’t quite right,” she recalled.
Brendan and Jenny attended one of the retreats last week.
“It has been good to get rid of some of the myths and misnomers,” Brendan said, admitting he had experienced “darker” emotions about his diagnosis. Having already planned their retirement, Jenny said the diagnosis brought grief. But, now, she said they were hopeful.
Dementia is not a normal part of ageing, although age is a primary risk factor, alongside hearing loss, brain injury and family history.
Dementia Australia CEO Maree McCabe said the approaches to dementia were considering the “consumer voice” – the wants of those diagnosed with dementia – for the first time.
“We are not there yet,” she added. “This is going to be something that will change as new generations come through, and as new research comes through.”
A necessary immediate step, McCabe said, was implementing the recommendations of the Aged Care Royal Commission to mandate training about dementia for all aged care staff, including maintenance, kitchen and other staff in non-carer roles.
McCabe said medications recently approved by the US Food and Drug Administration to treat Alzheimer’s disease had provided hope in the sector.
One, Lecanemab, an intravenous infusion that assists the nervous system in clearing the proteins in the brain that cause the disease to progress, has been under consideration by Australia’s Therapeutic Goods Administration since June.
“Because they have had good results, it might encourage other pharmaceutical companies to come back to doing dementia research again,” McCabe said.
“We really are on the precipice of a whole new era.”