‘No one would even talk about it:’ dementia patient says stigma is decreasing
“When I was first diagnosed not much was talked about with dementia and it was frightening to most people,” said Christine Nelson.
She was diagnosed with dementia more than 15 years ago.
“It’s changed because people are okay with that now, whereas when I first got diagnosed I mean no one would even talk about it,” said Nelson.
“And didn’t realize that many of us can go for quite a while and still be living and trying to live a functional life,” she added.
Once source of support for Nelson is the WestView Dementia Community Support Collaborative in Stony Plain. The group was given a $68,000 grant from the provincial government in 2017.
“The ultimate outcome was to make sure they have dementia inclusive community, bringing the right partners around the table especially people with lived experience, either people who had partners or parents with dementia or people living with dementia themselves,” said Alberta Health Minister Sarah Hoffman.
The group provides support to people with dementia and their families, and are working to improve awareness.
“This community is really working towards educating people and getting businesses and everyone to understand that many of us have Alzheimer’s or dementia and are still very functional in the community but need support and help,” said Nelson.
“Every community is unique and Stony is definitely doing some great stuff with the grant money that they received,” said Hoffman.
When Nelson was diagnosed she got involved with the Alzheimer’s Society, and worked on her physical health.
“I’m actually afraid to stop ‘cause I think that’s what kept me well,” she said.
She takes part in programs at the community centre and even line dances once a week.
“I look good but I can’t cook, I can’t drive, I can’t, lately this is good I’m talking but if there was a lot of noise I could be yelling out inappropriately which can be embarrassing,” she added.
Nelson says the most important thing for people with dementia is, understanding.
“Try and be patient with us and understand, like when you’re in a store and you can’t count your money, when maybe you’re inappropriate in a restaurant ‘cause the noise is too much and you might want to have the t.v. turned down.”
Since working as a co-facilitator with a support group, Nelson has found many newly diagnosed people have trouble telling their family and friends.
“In our support group now I really work at trying to get people to be comfortable, that what we have is no different than having an illness, you know it’s nothing to be ashamed of.”
“There’s always hope, and to stay as busy and as active as you can with your mind, to not be ashamed, to be able to still go out and live your life and that’s a biggie, ask for help.”
Nelson is happy with the work being done so far, but says financial assistance for people with dementia for housing needs or to attend programs would go a long way.