An entire community reaps the benefits when various voices are heard and understood. As a member of a community, one should feel as though they have a seat at the table—especially when it comes to decision-making for matters directly effecting their own daily lives.
Reducing Stigma and Promoting Social Inclusion of People with Dementia: Putting Social Citizenship into Practice is a community-based action research study striving to utilize the crucial perspectives of those people living with dementia in the community in order to combat the persistent stigma and social exclusion they face.
Who better to design a research study and dig deeper into discussions surrounding dementia and the social exclusion and stigma which too often accompany it than those with the perspective of lived experience of such circumstance?
At the centre of our research team, guiding the direction of the research, is the action group, which is made up of people living in the community with personal, lived experience of dementia. The action group members play a lead role in planning research, guiding team decisions on how analysis should take place, and offer first-hand perspectives and interpretations of collected data. Community partners and academic researchers are consulted throughout the project.
Throughout this four-year project, our action group met monthly to discuss issues around stigma and to share first-hand experiences of social exclusion and inclusion. These conversations shaped the objectives of this project and determined the direction of future data collection.
The sorts of data we collected included candid, round-table conversations within our action groups and other community stakeholders, data collected from focus groups and more formal interviews with other people living in the community with dementia, and data collected through arts-based methods of collection (observations of arts-based activities and alternate forms of communication—through visual art-making and participation). The focus of these conversations included addressing what social exclusion and stigma look like for people living with dementia, how it is perpetuated, and how we can tackle these issues.
To be able to create a deeper and more refined understanding of what it means to live with dementia in the community and how policy-makers can work together with people living with dementia to create safer, more inclusive communities.
FROM THE ACTION GROUP
The following quotes encapsulate some of the experience of the Action Group and their collective work towards the creation of the Toolkit and the Flipping Dementia Stigma Guide.
“I’m a human being and…I’ve got the whole package here…you’re just looking at one thing…
Sarah, AG Member
“...The experience of this group has assisted me...to...advocate for what I...believe in or what I see is important, and it's also helped me in other areas where I’m advocating as well…The whole impact of dementia upon me...has made me become an advocate for others and for myself. So what I’m saying is, this group has really helped me...Build those advocacy skills..."
Craig, AG Member
“I have this burning desire to… help our… whole group of people with any neuro cognitive disorders… in real ways that can make their life easier.”
Myrna, AG Member
“I try and look at it…I’ve got this disease and I didn’t ask for it but here it is and so maybe there’s a message here…maybe I’m supposed to have this…as a role model for other people…”
Sarah, AG Member
“What sets this project apart is that people living with dementia are up front and active – it is our voices about our experiences”
Granville, AG Member
“When I left the last meeting I was just absolutely thrilled because I could see us…flipping stigma on its ear and turning it upside down and making it a comfortable place so dementia doesn’t have to be a horror show…”
Sarah, AG Member