Thunder Bay dementia advocate wins inaugural award for seniors

Bill Heibein was diagnosed with dementia 18 years ago. He now works to support others and to end the stigma around the condition, particularly the belief that people with dementia can't be trusted to remember or understand anything.

Bill Heibein lives with dementia and co-founded the Ontario Dementia Advisory Group

Bill Heibein talks to reporters before being presented with Age Friendly Thunder Bay's inaugural Senior Service Award. (Heather Kitching/CBC)

The group Age Friendly Thunder Bay capped off National Seniors Month Thursday by presenting its first ever Senior Service Award. 

The award went to Bill Heibein, a man with dementia who co-founded the Ontario Dementia Advisory Group (ODAG) and served as the Honorary Chair of the Walk For Memories.

He was also one of the first people living with dementia to testify before a Senate Committee looking into the condition in Canada. 

Heibien said he felt "great" and "honoured" at being selected.  

"I knew nothing about the award. I knew nothing that my name had been submitted. It just came out of nowhere," he said. 

Heibein received his diagnosis 18 years ago and was told by doctors that he'd likely have five good years of life before ending up in a nursing home.  

Senior Service Award winner Bill Heibein poses with Coun. Rebecca Johnson, the chair of Age Friendly Thunder Bay. (Heather Kitching/CBC)

"When you're first diagnosed ... it's like getting kicked in the teeth," he said, "especially when you're told to go home and get all your affairs in order and make sure your will's made out."

In fact, Heibein has now lived nearly two decades without such a significant progression of his symptoms, prompting doctors to test him again a decade ago to reconfirm his diagnosis. 

Some of Heibein's work with ODAG involves trying to fight the stigma around dementia, he said, notably the belief of many people, particularly doctors, that anyone with dementia is mentally incompetent.

"[My wife] Heather was with me at the time I was diagnosed," he said. "All of a sudden, the doctors weren't talking to me.  They were talking to her. And that assumption is there that, hey, either I'm not going to be able to remember, or I'm not going to be able to understand it, and consequently you are sort of overlooked and bypassed."

In addition to working with ODAG and the Walk for Memories, Heibein plays bass in a band called the Bottom of the Barrel group and is a volunteer with the Dementia Cafe, a social group for people living with dementia that often features musical performances.

When asked what advice he'd give to others about living well with dementia, he said, "Stay active. Get out, stay social, stay out with your friends if you can, but stay active, and stay physically active as well as mentally active."