I like to think of [us all] as pioneers…
Donna, Action Group member
For dementia-related research to be effective, it must involve people with dementia. Full stop.
The Flipping Stigma on its Ear Toolkit is a beautiful example of this, as it originated from a Participatory Action Research study featuring insight and input from our group, a dedicated collective of people living with dementia. We worked alongside researchers to address the stigma and discrimination that frequently accompany dementia diagnoses and we developed an online resource offering practical suggestions on recognizing and responding to discrimination in all its forms.
From audio clips of action group members that detail our experiences, to provocative discussion prompts for family members and care givers around how best to support someone with dementia, the toolkit has become a powerful vehicle for change. It’s been used as curriculum for workshops in care homes, neighbourhood houses, community centres and volunteer training programs, all of which have yielded overwhelmingly positive feedback.
The toolkit is being touted as a driving force in building more inclusive communities. It’s educating medical professionals, health care workers, researchers, and other key community members in positions of influence.
THIS ACTION GUIDE
This guide was created by our Action Group (AG) members to provide direction for future research projects and collaborations, where people with dementia serve as co-researchers and partners in the change making process. It showcases what the group accomplished together, as well as what’s possible for others who decide to jump in and effect positive change too.
In our case, we built an online toolkit for decreasing stigma, but the range and nature of projects you could take on with a group like this are endless.
This guide is meant to help give you a sense of what’s been most important for us when establishing our group. It includes all the elements that helped us move forward into doing the work.
WHO WE ARE
We are a group of individuals living with dementia who have worked in partnership and collaboration with a University of British Columbia research team since 2019.
Though the specifics of our dementia diagnoses vary, what we share are strong values around the inclusion of people with dementia in all spheres of civic and social life. We also share a passion for changing perceptions of what it means to live with dementia.
We worked collaboratively on a research project called Reducing Stigma and Promoting Social Inclusion: Putting Social Citizenship into Practice. This was a four-year initiative funded by the Canadian Institutes of Health Research.
Click on the names to know more about us.
WHAT WE BRING TO THE PROJECT
Every member of the group lives with a form of dementia.
A SENSE OF URGENCY
We’re all driven to make life richer and more equitable for others with dementia.
We bring a range of viewpoints, skill sets, and professional backgrounds.
As you read through our bios, you’ll hear about members with backgrounds in nursing, teaching, and administration; members with strong public speaking skills, networking, leadership, and abilities navigating committee dynamics. You’ll learn our group includes researchers, artists, travellers, authors, and community engagement experts. There’s no shortage of wisdom here, and what’s extra special about the group is the way we hold space for one another, respect each other’s sometimes differing opinions, and actively listen to new ideas.
FRIENDSHIP AND TRUST
We have, first and foremost, built friendships and a deep sense of trust in the group over the years which has laid the groundwork for real cohesion, empathy, support, and care.
**While some of us knew each other before hand from previous projects, others did not. So, when we came together in this new iteration, our first order of business was to establish a real foundation of mutual respect.
THE ACTION GROUP JOURNEY
HOW IT ALL STARTED
The idea of the Flipping Stigma project began with a small group of academics, but the creation of the toolkit and the real action didn’t kick off until we as people with lived experience came to the table.
In fact, this project was not successfully funded until the research team included an expert with lived experience of dementia.
As a diverse group of individuals, we were ready to join a team, establish some collective goals, and give all members a chance to share what they needed to feel safe and supported in the group.
We focused on establishing a common goal in our early discussions: thinking through how we thought people with dementia should be treated.
This led to conversations about “what the hell” social citizenship meant, which led us to stigma, and its drastic impact on the experience of living with dementia. That’s where we arrived at the toolkit title “Flipping Stigma.”
We created collages guided by the question, “What would flipping stigma look like to you?”
Collage by Lynn
ACTION GROUP GOALS
… we need to be more versed in what we want people to know… not only about ourselves but just about Alzheimer’s in general because we all have knowledge…”
”…the relationships…between…the action group members…is…of …foundational importance and consequently should be looked at even before we talk about what kind of purpose we want to create as a group. We need to have a real sense of the individuals involved in that group. And through that…group awareness, the purpose will evolve…”
Action Group Member
WHY WE CAME TOGETHER AS A GROUP
We came together around a shared desire for change: to contribute to research and to make change happen.
But before we could achieve this, we had to establish relationships and build trust as a team.
Once that sense of connection and camaraderie was in place, we really started growing and learning together. We built advocacy and self-advocacy skills with an enhanced sense of confidence and worked together to develop this incredible legacy project that’s already prompted a broader sense of empathy and understanding in our community.
We were excited to contribute to research, “one of the vehicles” in which advocacy happens. We joined the project because we were ready to “get down to the grind” and make change happen.
We don’t do it to get fulfillment but we do receive fulfillment by accomplishing something that is useable and people go, ‘hey that’s really helpful.’
Craig, Action Group Member
ACTION GROUP GUIDELINES
It helps when there is flexibility and a sense that the work being done “really matters”.
We need good facilitation (facilitation NOT direction) for the work to proceed. This includes regular housekeeping work such as scheduling meetings, providing agendas and technical support, etc.
Research team members always bring flexibility and an open mind to the meetings, and follow up regularly with members about their experience as part of the group.
Building relationships with others who have dementia, engaging with the broader community, and creating a sense of belonging within the group were identified as critical aspects of our group environment.
Setting ground rules in the beginning such as mutual respect, reciprocal listening, being patient with one another, and withholding judgment, was important.
GROUND RULES INCLUDED:
Be open to everyone, respect and listen to everybody, let them contribute in the way they’re most comfortable, and, lastly, listen, listen, listen.
It helps to have a sense of humour.
Research team members/ facilitators should set aside time in meeting agendas for casual catch up and updates so members can have the opportunity to connect.
BUILDING ADVOCACY & SELF-ADVOCACY SKILLS
Enhanced advocacy and self-advocacy skills evolved in all of us as a direct result of this work together. We noticed huge personal growth, learning, and increased confidence all around. Having that tight-knit support network really facilitated that for us.
We made space for—and celebrated even—everyone’s strengths, weaknesses, and differences. We encouraged each other to participate with confidence and worked cohesively towards our shared goals.
LEAVING A LEGACY
There have been several lasting legacies from our work as Action Group Members. These include the Flipping Stigma Toolkit, the “Celebrate Life” T-shirts, and this guide.
We have been very effective at PROMOTING ADVOCACY: People who have been part of the Action Group have become more active advocates in community and have taken on other advocacy roles as well.
It is important to be focused on HOPE and
CELEBRATING LIFE while living with dementia.
HOW CAN YOU CREATE A GROUP LIKE THIS?
1. See a need in your community and become curious: how could that need best be met?
2. Find a few people who align with you: people who are passionate about the same issue and keen to effect change.
3. Commit to meeting regularly to further explore what that "change" might look like.
4. As your group's connection deepen, and ideas become fleshed out, consider taking things further.
Check out our STEP-BY-STEP list below
for more details and suggestions.
Reflect on your journey with dementia and your relationship to the community. What could you do to make living with dementia better for yourself and others?
Share and examine your ideas with trusted contacts in your support group or social circle. Then consider opening the conversation up with people who may offer a different perspective.
Establish connections with people keen to pursue action around your idea or concept. This will help you develop a draft plan.
Allow your idea to evolve. Refine your goal(s) and express your priorities. Think about the big picture: is this a local issue or a wider concern? How can you fund the idea so it offers the greatest positive impact?
Engage a champion (a researcher, a community leader, or a social justice advocate). Meet to discuss your thoughts, get feedback and invite them to work with your group. Determine if they are committed to listening, if they value your lived expertise, and if they can meaningfully engage with you.
Practice patience.The entire process will take time - lots of it. You’ll first need to establish an intended outcome, a rough goal around timeframe, and a list of required skills and financial resources. This will help determine next steps.
It’s a team effort, and it’s possibly one of the most rewarding experiences you’ll ever take on. We hope you’ll pause from time to time along the way to acknowledge the important work you’re doing to help move great ideas forward!
FOR PEOPLE WITH LIVED EXPERIENCE
INVITED TO JOIN A RESEARCH GROUP
1. Why am I being invited to participate in this study?
2. How will my expertise as a person with lived experience influence the research process, outcomes, or both?
3. Am I being included in defining the focus of the research?
4. How will my input be used?
5. Is my involvement being recognized as important?
REFLECTIONS FOR RESEARCHERS
HOPING TO COLLABORATE WITH PEOPLE LIVING WITH DEMENTIA
1. Am I willing to learn from those with lived experience on my team?
2. Am I willing to listen to all research partners and, where appropriate, be flexible in my approach within funding parameters?
3. Do I have the resources to support active participation by people with lived experience?
For a person with dementia, every day you wake up and put your shoes on, stand up without falling down, and find your way out of the room, is a day to celebrate.
When life is essentially a ticking time bomb, we need to make the most of every tick. To celebrate it all.
And to do that, we have to change our perspective.
We can choose to seek out the joy by saying,
“I’m going to make the most of my life as I have it.”
Granville, Action Group Member
The Action Group Guide is licensed under
CC BY-NC 4.0.
It was written by the Flipping Stigma Action Group, facilitated by Jim Mann and Mariko Sakamoto, with support from the Centre for Research on Personhood in Dementia Research Team, co-led by Jim Mann, Deborah O’Connor, and Alison Phinney.
Created by OPIA