TEN years ago at 53, Robyn Weller was working hard and looking forward to a happy retirement with husband Bob, but she was forgetting things.
“She’d go downtown to do the shopping, and I’d get a phone call. ‘I can’t find the car’,” Bob Weller, who used to run cattle on a farm outside Kingaroy, said.
“I’d drive into town in my ute to find the car and there it would be generally parked in the same place.”
Other signs started to appear.
Robyn was faltering in her work delivering special education services, and she had to give up driving because she would drive too far to the left, sometimes narrowly missing parked cars.
“Looking back, you could see the signs, but it took a long time to get a diagnosis because our GP wasn’t looking for it,” Bob said.
Eventually Robyn was diagnosed with younger onset dementia, because she was in her fifties when it came on.
Robyn is one of more than 400,000 Australians with dementia today, and one of more than 25,000 in the younger onset category – those aged under 65.
Dementia will cost Australia $14 billion this year.
And that figure will rise to more than $36 billion in less than 40 years as the number of people with dementia soars to 1.1 million , according to a new report by Alzheimer’s Australia.
The report, The Economic Cost of Dementia in Australia 2016-2056, carried out by the University of Canberra’s National Centre for Social and Economic Modelling, estimated there to be 244 new cases of dementia each day this year in Australia.
And while about one-third of dementia-affected Australians receive care, like Robyn, nearly one in 10 have no assistance at all.
Alzheimer’s Australia’s national president Graeme Samuel said the alarming figures were a wake-up call.
“(Dementia) is already the second leading cause of death in Australia and we know that the impact is far reaching,” he said.
“Despite the social and economic impact we still do not have a fully-funded national strategy to provide better care and outcomes for people who are living with dementia now, nor are we taking risk reduction seriously in order to try to reduce the numbers of people living with dementia in the future.
“The time for action is now. If we don’t do something now, the cost is going to continue to grow at unsustainable levels.”
Alzheimer’s Australia has appealed to the Federal Government to pledge $19 million towards fighting the disease, to raise awareness, improve aged-care services, and improve access to care.
Researcher Professor Laurie Brown said the new figures were a cause for alarm.
“What these figures show is an alarming upward trend of not only the number of people likely to be living with dementia over the next 40 years, but also the tremendous economic impact this will have on the entire Australian population,” she said.
“The sharp rise in the number of people likely to be diagnosed with dementia in the next 40 years, and the more than doubling of current estimates on the economic costs of dementia in Australia, is largely due to the increasing number of older people in our population and the fact that Australians are living much longer.
“A whole-of-community approach to risk reduction, and better co-ordinated care, along with a boost to research, is going to be needed if we are to curb the rise in people living with dementia by 2056.”
How they cope
Robyn’s diagnosis of younger onset dementia turned the Wellers’ life upside down and required a major life rethink.
“Everything was going great and then this turned up,” Bob said.
“We sold up everything in Kingaroy three years ago and moved down here to Brisbane.”
The Wellers now live at Everton Hills.
Some of their five adult sons and daughters, are close by, and there is access to care and services.
Bob decided to take on the role of principal carer for Robyn.
“At the beginning it is really difficult because you don’t know what role you are in … being a husband, father, carer – they all clash with one another,” he said.
“When I put my hand up for it I probably didn’t know what a task it was.”
Bob said one of the toughest challenges was dealing with Robyn’s changing and inconsistent behaviours.
“People living with dementia can suffer major behavioural changes. They can turn violent, swear when they have never swore before,” he said.
“It was quite a shock, for the kids in particular. I was living with it on a day-to-day basis.
“It still gets tough from time to time.”
Bob said there were times when Robyn could perform at a fairly high level.
Other times she can’t do what she did yesterday.
“For instance the routine of getting into the car each morning … some mornings she can walk around the front of the car, get in, close the door, put the seat belt on and we are ready to go,” he said.
“Other mornings, after backing the car out of the garage, I have to stop the car, get out, walk her around, put her in the seat … she can’t do any of it.
“She gets lost. And I have to retrieve her.”
The respite routine
Bob is greatly helped by care and respite service offered by Centacare, one of seven lead agencies that last year received a $20 million boost in Queensland Government funding to boost high-quality respite care for dementia.
One day a week Robyn attends a Centacare-organised women’s group and stays overnight.
“So I get 24 hours off,” Bob said.
“Centacare has been wonderful in organising respite care, and providing considerable savings.
“On Tuesday’s we go to an Alzheimer’s Australia program Come Dance with me.”
Centacare also provides Robyn and Bob with opportunities for social outings and activities at its Enoggera centre.
When the government last year announced a boost in respite funding for dementia care and services, honouring an election promise, Health Minister Cameron Dick stressed that programs would be tailored to meet the needs of carers, including early-morning and evening respite.
Centacare received $5.2 million to boost its services in Kingaroy, Hervey Bay, Enoggera, Coorparoo, Jamboree Heights and Gympie.
“Many carers provide support to people living with dementia or neurodegenerative conditions and in some cases this is a 24-hour-a-day, seven-day-a-week task,” Mr Dick said.
“It’s crucial that we have the support and services available to give these deserving individuals a break from their caregiving roles and responsibilities.
Mr Dick said there could be up to 75,650 Queenslanders living with dementia by 2019.
It is also estimated there could be up to 104,000 new cases of dementia in Queensland over the next four years.
– Mark Bowling