Flipping stigma: An online resource developed by people with dementia to challenge stigma and discrimination

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Feeling excluded. Judged by others. Disrespected or seen as incapable. For those living with dementia, discrimination can be a daily experience.

Three researchers – Dr. Deborah O’Connor and Dr. Alison Phinney from UBC and Jim Mann, an advocate for people like himself who live with dementia – are leading a four-year study funded by the Canadian Institutes of Health Research (CIHR) to take action against this discrimination. Their goal is to develop practical ways to support those with dementia to be active members of their community and to reduce the stigma and discrimination they regularly encounter.

An inclusive research process grounded in lived experience

“All three of us are co-leads, which is interesting in itself,” says Dr. O’Connor, a professor in the School of Social Work. “In particular, I’m not aware of other CIHR-funded projects that have a person with dementia clearly positioned as a research lead.”

The study is grounded in a research approach known as participatory action. As Dr. O’Connor explains, this is far more than simply involving people with lived experience as subjects in the research process.

Participatory action recognizes that for true societal change to happen, it must come out of the community of interest, which for our group is people with dementia. The research team includes two groups working collaboratively: academic researchers and those with lived expertise, who make up an action group. And this latter group drives the research direction.

Starting in late 2019, 12 people diagnosed with dementia joined the project’s action group. Initially meeting in a local community centre, they shifted to twice-monthly online meetings during the pandemic.

“Participatory action research involves the people who are part of a particular community,” says Mann, who was diagnosed with early onset Alzheimer’s in 2007. “In our first discussions, action group members agreed that the biggest thing they are affected by is stigma, and through that discussion thought creating a website would be a good way to contribute their thinking and experience to this issue.”

Granville Johnson, a member of the action group, says, “We spoke of our experiences – of our fears, concerns and hopes – and the disconnect with society around us. From those disconnects we identified the nuts and bolts of stigma. We focused on those individual elements and it all developed from there.”

The three research leads facilitated conversations and created a respectful environment where group members could candidly share their experiences and strategies.

“As researchers on this project, our guiding principle was to take leadership from the group,” says Dr. Phinney, a professor in the School of Nursing. “This is an approach that creates openings and generates new knowledge.” That knowledge found a home in the development of an online toolkit – www.flippingstigma.com – for people with dementia, their caregivers and dementia researchers.

A resource for “anybody and everybody”

Through short videos and quotes provided by action group members, the toolkit promotes awareness of the common experiences of stigma and discrimination faced by those with dementia.

The site also offers practical suggestions for how to respond to these discriminatory experiences – from choosing how to respond, deciding what you want to say or do, and knowing your rights.

There are also sections of the site targeted to family, friends and care providers. Group members say that it is common to experience discrimination even from health care professionals, with GPs not taking their initial concerns seriously or ignoring them in conversations and speaking to their family members instead.

A tool for empowerment

Action group members and the three lead researchers are excited about the potential for change offered by the toolkit.

“One of the stigmas around people with dementia is the belief that they can’t continue to meaningfully contribute in our society,” says Dr. O’Connor. “This toolkit challenges that. My hope is that others will understand that dementia is not an immediate death sentence and that people with dementia continue to have an incredible amount to offer. Stigma hurts and limits people with dementia, and we must not allow that to continue.”

The toolkit is also designed to support individuals living with dementia. “I hope that for people with dementia this toolkit will shorten the period of fear early in a diagnosis when the fear of the loss of self can be overwhelming,” says Johnson. “My hope is that this will shorten that process and help people ease back into their personal vitality and reconnect with that.”

With the recent launch of the toolkit, the group is now planning to share their research and the resource they’ve created more broadly. “We want to spread the word about stigma: how to respond to it and how to decrease it,” says action group member Karen Edwards.

We’ll be seeking guidance, direction and participation from the action group members in the next phase of the project,” says Dr. Phinney. “There’s been interest in taking the toolkit to community groups, community centres, libraries and other places so that people in the community can reflect on their own practices and learn how to be less stigmatizing and more inclusive.

Drs. Phinney and O’Connor are inspired by the work ahead, and they see great value in inclusive research models like participatory action that set the stage for lasting change. Action group members are equally hopeful about the future and the potential for this toolkit and their research approach to make a positive impact.

“There is a need to educate anybody and everybody about dementia: to show that you can continue living and participating in the community after a diagnosis,” says Mann. “As an action group, we want people to use this tool if they’re looking for ways to respond to stigma and to understand why people react the way they do. It’s also for researchers who are seeking to involve people with dementia and want to know how to do it, and for those in health care to understand the issues expressed by people with dementia. The site reassures people with dementia on the one side and educates the public on the other.”

Please visit www.flippingstigma.com to learn more about how to address the challenges of stigma and discrimination.

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