Recent celebrity deaths shine light on young-onset dementia

The high-profile deaths of AC/DC founding member Malcolm Young and David Cassidy of Partridge family fame are shining a light on young-onset dementia.

Laura Steeves-Green is with the Alzheimer’s Society of Saskatchewan and runs a support group for people under 65 who live with dementia.

“Certainly there is a stigma associated with young-onset dementia and, up until recently, there’s been a real hush-hush kind of mentality about the diagnosis of young-onset dementia,” she said.

Steeves-Green noted many of her clients are still actively working and some even have children at home.

She said hearing about Young and Cassidy, who were in their 60s when they were diagnosed, helps people feel less alone.

“Certainly higher-profile people coming out and raising their hands and saying, ‘yes, I have dementia,’ it really does help people living in Saskatchewan say, ‘hey I’m not the only one, it’s not just me,’ she said.

Steeves-Green said the diagnosis of young-onset dementia, which includes anyone under the age of 65, is becoming more prevalent as awareness grows among patients and doctors about the signs and symptoms.

According to Steeves-Green, the signs of dementia can involve personality changes and impulsive behaviour, but it requires a close look at the whole picture to diagnose.

For young-onset Alzheimer’s disease, short-term memory loss affecting day-to-day abilities is a big warning sign.

“If all of a sudden you’re struggling to drive a vehicle or if you are all of a sudden having trouble getting Thanksgiving dinner on the table — and that’s something you’ve always done — that kind of memory loss impacts your ability to function day to day.”

Unfortunately, for those living with the disease, there’s still stigma surrounding the disease that often leads to feelings of isolation.

Steeves-Green said she often hears the people in her support group talk about family and friends pushing them away.

“Common themes from our group are that, ‘I might have dementia, but dementia doesn’t have me. I need you to slow down, I might need you to repeat things, but I’m still here,’” Steeves-Green explained.

“Don’t talk about me like I’m not in the room. Please involve me in conversation.”

She hopes more awareness will help break down the stereotypes.

More than 19,000 people in Saskatchewan are living with some form of dementia or Alzheimer’s disease. She said around 10 people develop dementia every 24 hours.

While the official statistics for people under 65 with dementia are not available for Saskatchewan, Steeves-Green said the national rates show about two to eight per cent of cases are diagnosed in people under 65.