'It breaks your heart': a family's struggle with younger onset dementia

Updated

This is not how Suzie and Paul Muir pictured life in their 40s together.

"Have you got a bra on? What colour?"

If you are a woman, this is likely to be one of the first things Paul Muir will ask when you meet him.

The question may be inappropriate, but it is not because Paul is rude, or trying to make anyone feel uncomfortable.

At just 46 he has frontotemporal dementia, which progressively damages parts of the brain that affect behaviour, personality and emotions.

He now lives in an aged care facility in Melbourne's west.

"He asked my son's mates if they're circumcised, asks Carly and their friends if they've got their period, got pubes," his wife Suzie says.

"He's very inappropriate.

"But that's not him. It's the disease."

'They miss their dad'

Suzie says the younger onset dementia has left her husband a shell of his former self.

The pair have known each other since school and became a couple in their early 20s.

Paul, a blokey bloke, worked as a straddle driver at the wharf, was a local football coach and active dad in the lives of his teenage kids, and granddad to their older daughter's kids.

"They're too young to have their dad have dementia. They miss him.

"It breaks your heart, he can't be there for them."

His unusual behaviour started about three years ago.

"He'd ring his mate and say that his daughter had been hit by a car," Suzie says.

"People from work who were lazy, he'd say I'm going to kill your kids. But he's not aggressive at all, so it was really weird, the behaviours."

He also started becoming obsessed with food.

"He had a six pack, he was 87 kilograms, he went to the gym, he was a runner for the seniors."

The turning point came around a year ago, when his behaviour became increasingly unsafe, including wandering into neighbours' homes.

He was diagnosed with younger onset dementia, and was admitted to hospital.

"I knew then that he wasn't coming back home," Suzie says.

Paul spent six months in the hospital's secure ward before Suzie could find somewhere that would care for him.

At one stage, he spent two weeks in one aged care facility before they said they could not handle him.

"Because he was a rare case, a young male with more aggressive symptoms ... they said he was too intimidating, families complained, they weren't trained to be honest," she says.

"So they kicked him out."

Younger people with dementia lost in the system

While Suzie pictured these years to be filled with family holidays at the river, barbecues with their large circle of friends, and running around after their teenagers, her days are spent visiting her husband at an aged care facility.

"It's just my daily routine," she says.

"I need to get a job soon because soon his income protection will be cut out."

Dementia is generally seen as an older person's disease.

But growing numbers of people under the age of 65 are being diagnosed with the condition.

There are an estimated 25,000 Australians living with younger onset dementia.

Suzie would like to see more facilities specifically for younger people with dementia, acquired brain injuries and other illnesses, and investment in a greater number of staff trained to stimulate residents.

"He's too young to go on the aged pension. No one knows what to do with him," she says.

"I can't be there 24 hours a day.

"It's unfair that Paul has to be in an aged care facility. There's not enough facilities for people like Paul."

She says her husband has been lost in the system.

Topics: alzheimers-and-dementia, aged-care, family, maidstone-3012, melbourne-3000

First posted