For people living with dementia, battling stigma and discrimination is an everyday struggle.

It鈥檚 estimated that over 747,000 Canadians are living with Alzheimer鈥檚 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 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.

鈥淭here are a lot of people with dementia in every community that have come to realize that once they鈥檙e diagnosed they are still able to live a good life. We鈥檝e been fortunate to have members in rural locations 鈥� northern B.C., the Interior and a number in Metro Vancouver 鈥� they are seeing up close the impact they can have individually and as a group.鈥�

鈥淚鈥檝e benefited from seeing this change and its reconfirmed to me in my thinking that you can live well with dementia.鈥�

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鈥檙e treated as incapable.

Once people recognize stigma and how it manifests in peoples鈥� behaviour, Flipping Stigma then gives them tools to address the stigma and move forward.

Dr. Deborah O鈥機onnor 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.

鈥淚t鈥檚 been empowering for people to recognize how meaningful their contributions can still be. They鈥檙e challenging stereotypes. It鈥檚 made people feel less alone and way more connected.鈥�

O鈥機onnor 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.

鈥淢y hope is that it will empower people with dementia to know they鈥檙e not alone. To know that when people treat them in ways that are diminishing or discounting that鈥檚 the other person 鈥� that鈥檚 not a reflection of who they are. It鈥檚 a powerful tool for responding to those situations,鈥� O鈥機onnor said.

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cole.schisler@bpdigital.ca
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