WHAT WE'VE LEARNED SO FAR
Building Capacity for People with Lived Experience of Dementia: Achieving and Sustaining Impacts
On this section, we outline the impacts of the Building Capacity Project at the individual and organizational levels, as well as learnings about key implementation principles, which we will draw on during the project’s next phase to sustain and build on these impacts. We also describe a specific initiative to build knowledge and skill around dementia through the Flipping Stigma toolkit.
What were the aims of the Building Capacity Project?
The overall Building Capacity Project objective was to enable people living with dementia to participate in community life as full social citizens. Towards that end, the project developed and evaluated effective ways to create sustainable opportunities for people living with dementia, and family/friend caregivers, to remain active and connected in their communities through various initiatives as planners and participants.
In Thunder Bay, Lakehead University has partnered with the North West Dementia Working Group (NWDWG), an action group of people living with dementia and care partners.
In Vancouver, University of British Columbia partnered with the Westside Seniors Hub (WSH), a network of seniors-serving agencies, and more recently the Flipping Stigma Action Group (an action group of people with dementia from across BC). Overall, our hope was to support the growth of a diverse range of innovative community initiatives that foster inclusion and reduce stigma by creating opportunities for people with dementia to remain active and socially connected.
PART ONE: IMPACTS
WHAT DID WE ACHIEVE?
What were the impacts on the individuals involved in the initiative (people with lived experience, care partners, staff, and community members)?
The impacts on people with lived experience were achieved in Thunder Bay through the Dementia Café and North West Dementia Working Group (NWDWG), where participants we interviewed described the sense of well-being derived from being able to contribute to advocacy activities that have helped improve the community’s capacity for supporting other people experiencing dementia, by influencing policy, educating students, and raising awareness about dementia in the community of Thunder Bay, and in surrounding communities. People with lived experience and care partners have also benefited directly from the sense of community and support that has come from their participation in the Dementia Café and NWDWG. In both settings, people describe the value of social connections, and how those have benefitted them throughout their involvement, specifically during the pandemic.
Members of the NWDWG, as well as some of the BC-based advocates (i.e. members of the Flipping Stigma Action Group) have also valued their involvement as educators for the Westside Seniors Hub, helping Hub partners make their settings more inclusive. These partners (community centres, neighbourhood houses, residents’ associations, senior centres, church congregations, libraries, and seniors’ day programs) have described the value of learning from the Action
Group advocates as well as from their Flipping Stigma toolkit. This has motivated them to learn more about dementia and its experiential aspects, including stigma, which has helped them become more confident and able to create supportive environments for people with dementia in their own settings. (See below for a description of the Flipping Stigma training initiative.)
Together with the seed funding, and direct 1:1 project support, this increased capacity (knowledge, skills, and confidence) in turn has facilitated the implementation of new programming (see below) that has increased options for seniors within these organizations that are dealing with dementia, memory challenges, or who are interested in taking steps to maintain healthy brain function. Furthermore, staff, volunteers and program participants from these organizations/community groups have commented on engaging in conversations about dementia outside these spaces, with their neighbours and family members, and into the broader community. The seed funding has also helped Hub partners (e.g. ASK Day program) supplement existing programming for people with dementia, which has resulted in benefits not only to the well-being of participants themselves but also their care partners, who benefit from having some time for respite.
What are the ongoing organizational impacts of the Building Capacity Project?
The Building Capacity Project (BCP), in collaboration with community partners in Vancouver has developed (and in its next phase is endeavouring to sustain) initiatives in the areas of arts, social participation, fitness, and volunteer activities (such as Happy Memories Café, the Buddy Program, and pop up events through the Fireweed Club.) The Westside Seniors Hub, with the support of the BCP’s communications team, developed a project-specific website and social media campaign (Soundbytes) aimed at the general public.
In Thunder Bay, the project built on previously established initiatives and created deepened opportunities for social participation through the Dementia Café, and opportunities for community advocacy through the North West Dementia Working Group.
Through the use of the Flipping Stigma Toolkit training, in Vancouver, the project has also supported community partners (e.g. libraries, church congregations, existing programs in community or seniors centres, etc.) to become more inclusive of people living with dementia by improving knowledge about dementia, raising awareness of the experience of dementia (including stigma) and increasing dialogue, thereby making community members, staff members and volunteers in these organizations more confident about being able to provide inclusive and effective support.
What were the impacts on specific subpopulations?
Though we collected some event-specific subpopulation data in the final phases of the project, we were not able to collect reliable quantitative data on gender and group identity factors that would summarize our project’s overall reach for the entire reporting period. However, from qualitative data we can say that our main impacts here include the formation of the Dementia Sisterhood, a virtual support group for women with dementia including members from Thunder Bay, Vancouver, and a number of other provinces.
Another relevant impact in Vancouver came out of a three-part bilingual training event on dementia organized by the West Point Grey United Church that was conducted in English and Mandarin simultaneously, which increased dementia-related awareness, skills, and protective factors in the audience, including some people with dementia and care partners.
(Evaluations of this training initiative, which was also conducted with other partners, identified further training needs in the areas of trauma-informed approaches to dementia and intersectional approaches to dementia). Also, as an offshoot of the Happy Memories Café, whose members include a majority of Spanish-speaking members, South Granville Seniors Centre is planning to develop a separate Spanish-speaking Happy Memories Café. Finally, as part of a cross-site event in October 2021, we conducted a series of panels on the influence of culture, language, and spirituality on dementia, and shared the learnings of these through SoundBytes, our social media campaign.
One key learning was that while stigma may be more prevalent in certain communities, people from racialized communities can find it more difficult to navigate the dementia-care system and access help.
PART TWO: IMPLEMENTATION
HOW DID WE ACHIEVE THESE IMPACTS?
From our Thunder Bay Partners we learned some key principles for engaging people with lived experience, including:
the importance of taking time to do the engagement (the Northwest Dementia Working Group evolved over a number of years, drawing on people who were at the point in their dementia journey where they were ready to “give back”
the importance of having people living well “in the space” as role models (this could help others who wanted to participate but may have been scared or put off by the stigma of dementia)
the importance of relationships (the relationships are as important as “the work”)
From our Westside Hub Partners in Vancouver, we learned about the process of innovation as Dementia Ventures Partners implemented new initiatives. This included:
drawing on existing resources (which can get around the problem of trying to do something “off the side of the desk”)
looking for “small wins” (and not getting overwhelmed by trying to do too much)
staying flexible (some of our smaller partners were more able to move ahead during the pandemic, drawing on grassroots neighbourhood relationships)
using a “ready, fire, aim” approach (not trying to have everything figured out, but moving ahead on something and then reflecting)
the importance of having a champion at a high level of the organization
We also learned about the value of the Westside Seniors Hub structure itself:
We also learned about the value of the Westside Seniors Hub structure itself:
for “opening doors” to partners that are ready to move forward on an idea for making the community more inclusive of people living with dementia
for creating a network for learning together, “being part of something bigger” and making a collective impact.
Learnings about how to support implementation
Through the evaluation, we identified several key elements that are important for facilitating implementation that will form the basis for our implementation strategy in the project’s next phase.
The key elements of the approach, include:
training about dementia and dementia-related support, including recognizing and addressing stigma.
engaging/collaboration with people living with dementia.
1:1 community development coaching, including asset-mapping and plan development supported by an “implementation seed fund”.
supporting implementation through networking with other initiative partners.