“My personality has always been to make the most of my circumstances,” said Susan Caron, who’s living with dementia. “And having a sense of humour never hurts.”
Caron first moved to Chilliwack from Vernon 10 years ago, around the time that she first started to notice issues developing with her memory, but it wasn’t until a year ago that she first connected to the Alzheimer Society of B.C., joining with a support group for people in the early stages of dementia.
In the support group, she is able to share her experiences of the disease and learn from others. “It’s been very important, knowing that I’m not alone on this journey, and it’s been invaluable to learn how to live with it.”
Caron has been dedicated to helping others over the course of her life, having spent 30 years as a nurse – notably delivering over 50 babies during that time – in communities across the province, before becoming a crisis line volunteer and spending time as a teaching assistant.
As her disease has progressed, Caron has adapted to her changing situation. She’s had to give up driving and start walking more often, but still maintains her independence as much as possible, making an effort to continue travelling, having been to Italy three times.
The key to holding onto that independence and staying engaged for Caron is being willing to share with others a bit about her dementia so that they can better understand what’s happening. One example: she talks to airlines to make sure they know she’ll need extra assistance.
There is much more to Caron than her disease, and she has lots of life left to live.
That’s the premise of the Alzheimer Society’s continuing nationwide campaign: Yes. I live with dementia. Let me help you understand.
While there is no question that dementia is a challenging disease, it’s just one aspect of a person’s life story.
The campaign kicked into high gear last week, during the start of Alzheimer’s Awareness Month. It showcases the unique and diverse stories of individuals living with Alzheimer’s or another form of dementia across Canada. The aim of the campaign is to change attitudes toward the disease and erase the stigma. Life continues after a diagnosis of dementia.
“We’re turning the conversation over to the experts,” says Cyndi McLeod, Support and Education Coordinator at the Alzheimer Society of B.C.’s East Fraser Resource Centre.
“We believe sharing the stories of Canadians living with dementia will fuel a more open, supportive and inclusive dialogue about dementia and give confidence to others who have this disease to live their best lives.”
Research shows that stigma associated with dementia is rampant. In a survey commissioned by the Alzheimer Society last year, one in five Canadians said they would feel ashamed or embarrassed if they had dementia while one in five admitted to using derogatory or stigmatizing language about dementia.
In addition to helping Canadians better understand dementia, Alzheimer’s Awareness Month provides a platform for people like Susan to define who they are as individuals, rather than being defined by the disease.
Throughout January and the remainder of the year, Hope residents are invited to visit the campaign’s dedicated website to learn more about the people getting on with their life in spite of dementia, get tips on how to help end stigma, test their own attitudes towards the disease and download other useful resources.
To learn more about the campaign and get involved, visit ilivewithdementia.ca.