For people living with dementia, battling stigma and discrimination is an everyday struggle.
It’s estimated that over 747,000 Canadians are living with Alzheimer’s or another form of dementia. An action group of UBC researchers and people with lived experience have been working to develop a toolkit to help combat stigma and improve the lives of those struggling with the disease.
The group has launched a website called Flipping Stigma that shares resources on recognizing stigma, responding to it and building skills to change how society views people with dementia.
Jim Mann is a principal investigator with the UBC action group and lives with dementia. He said his work with the group has proven that people can still lead fulsome, fulfilling lives after a dementia diagnosis.
“There are a lot of people with dementia in every community that have come to realize that once they’re diagnosed they are still able to live a good life. We’ve been fortunate to have members in rural locations — northern B.C., the Interior and a number in Metro Vancouver — they are seeing up close the impact they can have individually and as a group.”
“I’ve benefited from seeing this change and its reconfirmed to me in my thinking that you can live well with dementia.”
The Flipping Stigma website includes recordings from people living with dementia recounting their experiences with stigma. Some examples include how medical professionals will speak to spouses or care providers about the diagnosis rather than to the person with dementia directly. Others touch on how they feel diminished as people, judged by others and how they’re treated as incapable.
Once people recognize stigma and how it manifests in peoples’ behaviour, Flipping Stigma then gives them tools to address the stigma and move forward.
Dr. Deborah O’Connor is the co-director of the Centre for Research on Personhood in Dementia and a professor in the UBC school of social work. She said the work has been powerful for those involved.
“It’s been empowering for people to recognize how meaningful their contributions can still be. They’re challenging stereotypes. It’s made people feel less alone and way more connected.”
O’Connor and Mann hope the website will help people living with dementia will gain confidence in themselves and help to educate those without dementia on how to address their own internalized stigma.
“My hope is that it will empower people with dementia to know they’re not alone. To know that when people treat them in ways that are diminishing or discounting that’s the other person — that’s not a reflection of who they are. It’s a powerful tool for responding to those situations,” O’Connor said.