Dementia awareness campaign aims to break diagnosis stigma
I was diagnosed with Alzheimer's when I was 48 years old," said Andrea Bridge, whose story is featured in the awareness campaign Faces of Dementia."
Now 54 years old, the mother of teenaged triplets has been rediagnosed with frontal lobe dementia.
Which is like Alzheimer's but with a really good kick," Bridge said. When you are younger, doctors dismiss it, but it still happens."
Faces of Dementia" is an educational campaign and exhibit from the Empowering Dementia-Friendly Communities Project." It promotes awareness and development by offering free workshops to educate people and give them resources to create more dementia-inclusive environments.
Bridge, a retired educational assistant at the Hamilton-Wentworth District School Board, said the first sign something was wrong was not being able to ride a unicycle anymore, something she had been able to do since Grade 3.
You kind of go through all of the stages that anybody does when they have some devastating news. Like grief and feeling sorry for yourself," she said. Well, life keeps going and there is no set in stone progression. I first thought I was going to go downhill so quickly and I keep going and going. But it's certainly handicapped me. I can't work anymore."
Bridge said after the diagnosis, her first fear was for her family.
When you have younger kids, you don't want to leave them or have them take care of you."
Married for more than 26 years, Bridge said having someone to stand by and support through the stages of the diagnosis is important.
My spouse has been really patient. Sometimes it can be a little annoying. I forget where I put things, I forget what I'm doing and forget to do things that I'm supposed to do. The whole family chips in, but it can be frustrating," Bridge said.
What brings comfort in a situation you can't control?
The best thing my spouse ever said to me was to take one day at a time. She told me to do everything that I still enjoy doing until you can't, then find something else that you will enjoy. I'm lucky to have someone stand by me."
Bridge said some folks who get diagnosed end up losing friends due to misconceptions about the disorder.
As soon as you tell someone that you have Alzheimer's it's really scary for them because they don't know what to say. It's at the top of a lot of people's list of diseases they would definitely not want to get."
For Bridge, taking away the stigma from Alzheimer's or any other dementia is necessary in order to include people living with the diagnosis and make them feel part of their community.
People still want to be involved and be out there doing things. I just want people to realize that the world doesn't stop with that diagnosis, that you are still a participant in life," Bridge said.
Funded by the Public Health Agency of Canada, the Faces of Dementia" exhibit highlights stories of people living with dementia and aims to break stigmas that come from the diagnosis.
Tracy Gibbs, project manager for the Hamilton Council on Aging and the exhibit's organizer, said the campaign was co-created with people who are living and affected by dementia.
We put a call out for individuals who are living with dementia and might be interested in helping to build this awareness. There are now seven people who share their stories and make up the gallery exhibit," Gibbs said.
According to a release by the Hamilton Council on Aging, 61 per cent of older adults living with dementia live outside of long-term care homes and want to maintain their independence and engagement in community life.
Through videos and imagery, the interactive exhibit brings the message I AM MORE ..." to help to expand visitors' understanding of what living with dementia looks like.
The campaign itself is about people sharing their stories and what it's like living with dementia, and what they want the broader community to know about living with dementia and also what they want other people living with dementia to know," Gibbs said.
Ruby Qureshi is a member of the campaign. She was diagnosed in August 2020, before her 64th birthday. She went through various tests until the Alzheimer's diagnosis was confirmed.
She was at a Faces of Dementia" launch event at Sackville Hill Seniors Centre last month with her husband, Abdul.
Ruby started to forget some things. First we ignored it, but then we began to suspect there was something serious," he said.
Abdul said Ruby's diagnosis came at no surprise. Her father and uncle also had Alzheimer's.
When she was diagnosed, Ruby saw her father and uncle, knowing there is no cure. So she volunteered to participate in any way possible to help the cause," Abdul said. She is also participating in a drug study program to find a cure for Alzheimer's. She wants to help in any possible way. It may not help her, but she says it will help future patients."
He said he tries his best to help Ruby by encouraging her to do whatever she can to stay active. The Qureshis go on walks and hikes multiple times a week with their children.
Ruby said keeping herself busy with chores or hobbies is a way she has found to take her mind away from the diagnosis.
There are so many diseases. Whatever it is, you have to deal with it and whatever you can do, don't stop. I do my cooking and sometimes I forget, so I ask Abdul to help me out, but I'm doing cooking every day. I love sewing and I didn't stop that. Sometimes it takes me a long time to do stuff, but I think if I stop everything, I won't be able to do anything. I keep myself busy," Ruby said.
Married for 44 years, the couple has three children and eight grandchildren. Abdul said reassuring and supporting your loved ones makes a big difference at home.
We (Ruby and I) talk about it so many times to reiterate that as partners we are both in this together. I believe we need to be there like we are there for our children when they are growing up. This is what it is, we are partners for everything."
The Haldimand event for the Faces of Dementia Gallery Exhibit" happens in Dunnville and will include a video screening. The exhibit runs until mid-November at MINGA Cafe and at Sackville Hill Seniors Centre.
Beatriz Baleeiro is a reporter at The Spectator. bbaleeiro@torstar.ca
What: Faces of Dementia Gallery Exhibit"
Where: MINGA Cafe on 146 Queen St., Dunnville
When: Oct. 12 from 1:30 to 3:30 p.m.
To learn more about the Faces of Dementia" campaign, visit facesofdementia.ca.