George Thompson’s life is one of routine.
His wife, Gwen, has late-stage Alzheimer’s disease so he needs to make sure that she takes her medication, has a shower, goes to the toilet, eats properly, keeps somewhat active and goes to sleep correctly every single day.
His routine has not changed for over two years, and he has all but given up on altering it.
“I have no free time whatsoever anymore,” George says. “I’ve totally sacrificed my social life. I have friends that I haven’t seen in over two years when I used to see them every couple of months.”
George is just one of hundreds of thousands who have taken up the role of being the primary carer of a person living with dementia.
Known as informal or “family” carers, they are the backbone of Australia’s dementia care system.
Without them, that system would collapse. And the cracks have already started to show.
A broken system
Within the next decade, with Australia’s current dementia care model, there are going to be more people living with dementia than can be adequately cared for, either by professional support care workers or family carers.
According to the Australian Bureau of Statistics (ABS), people aged 65 and over is Australia’s fastest growing age demographic and that growth will not slow down for at least another two decades.
The ABS 2018 survey on Disability, Aging and Carers found that fewer than 1 per cent of people under 65 were living with dementia but that number grew to nearly 27 per cent of people aged 95 and older.
Many fear that this will cause immense strain to be put on the dementia care system.
The head of t he Dementia Advisory Service for New South Wales Health in the Inner-West, Anne Tunks, says the system already can’t cope.
“People are in crisis,” says Anne, who is a psychologist with more than 30 years of experience working in dementia care.
There’s not enough care workers and there’s so much pressure on families that it’s causing them a great deal of stress.
“They want to continue caring for [family members living with dementia] at home but can’t get sufficient support.”
Even among professional support care workers the strain is being felt as there are concerns that the training that they receive isn’t enough.
“There isn’t adequate training in dementia care,” Anne says. “Carers are expected to manage in situations in which they haven’t been prepared. Even in the qualifications that are available, there isn’t enough emphasis on supporting people with dementia.”
However, when prospective support workers do receive enough training and education, there isn’t enough incentive for them to choose dementia care as a career.
“The wages that some of the care workers are earning isn’t enough to be sustainable so it’s not attracting people to the industry,” Anne says. “For example, a registered nurse who does have a university qualification is paid less if they work in a nursing home than if they work in a hospital.”
This sentiment is echoed throughout the professional dementia support carer community.
Milka Milicevic, who was a former dementia support worker for Bankstown Auburn Home Support as well as the Sydney Local Health District, said that changes is necessary.
“When you add it all up, it’s not a rewarding profession,” Milka says, “but it’s really needed especially these days. We need workers with a lot of training and workers who care and understand what is needed of them.”
The costs of caring
With the increase of the amount of people living with dementia set to rocket over the coming years, there is increased reliance on family carers to pick up the slack.
However, the costs of caring for someone living with dementia can be too much for those family carers.
“I have to spend roughly $20,000 a year to care for Gwen,” George says. “Basically, all the money I had saved up for my retirement is being spent on caring for her.”
George, who is a retired engineer, said that caring for his wife is more work than his full-time job ever was.
“My job used to be nine-to-five,” he says, “but now it’s more like 24/7.”
Even among home support care workers like Milka, there are still costs that are expected to come out of their own pocket.
“I had to pay for my own petrol driving to and from each person I was caring for,” she says. “I was compensated a little for that, but it was never enough to cover the costs.”
Milka was also expected to work outside of her standard hours for no extra pay.
“I got called up frantically by family members a few times a year because of an emergency,” she says.
I was once called up at around midnight to defuse a situation where a husband with dementia was being verbally aggressive towards his wife.
All the costs associated with care for a person living with dementia are set to go up, especially with the introduction of legislation that would require family carers to pay dementia support workers in two-hour blocks rather than the one-hour blocks that are currently required.
With the changes set to be implemented from July 1st, George has no idea how he will cope.
“I currently have a support worker in every morning for an hour to help Gwen shower and go to the bathroom, and then another hour every night to help her get to bed,” he says. “If I have to pay for two hours each time, my costs might get to as high as $70,000 per year and I just can’t afford that.”
George says that support care workers should be paid more but thinks that this is the wrong way to go about it.
“All this is doing is adding more costs to people like me,” he says. “There’s going to be so many people who are now going to be unable to pay for the help that they need.”
Caring for the carers
While the issue of caring may seem complex and unsolvable, Anne has a solution that she thinks will fix the problem.
“Pay carers more,” she says. “It really is that simple. They don’t need more work or anything else other than more dollars per hour in order for this crisis to be fixed.”
George agrees with that but also thinks more training for family carers is needed to help ease the stress of the work they put in.
“I didn’t receive any formal training whatsoever when Gwen was diagnosed,” he says. “I had to learn everything through trial and error.”
With the situation looking dire, Anne believes that more awareness of the issues that both professional and family carers face is needed.
“If people were more aware of how bad the situation currently is, I’m sure that they would take it much more seriously than they are now,” she says.
“Carers need help and without it, I’m afraid that the people living with dementia are going to suffer the most.”
(Note: Anne Tunks, who was interviewed for this feature, is the mother of the writer of this article, Theo Tunks)