INCLUSIVE COMMUNITIES FOR
PEOPLE LIVING WITH DEMENTIA
“What if we replaced the persistent rush to establish “what is the case” and began to ask, “what kind of world could we build?”
– Kenneth Gergen, 2016 -
The Building Capacity Project identifies concrete ways communities can become more dementia inclusive. The interests and expressed priorities of those living with dementia are at the centre of this work. Together with people living with dementia, community organizations and university researchers guide the design and implementation of new initiatives and capture knowledge about what works when it comes to making communities more dementia inclusive– and why.
The learnings we have gleaned from the first four years of the project are now informing the development of our Action Guide, a roadmap for other communities wanting to create more dementia-inclusive programs and services in their own contexts. As we build and share this document, the hope is that in addition to guiding other communities doing similar work, it will also inform policies and priorities in higher level community and health settings such that we completely shift the paradigm, erasing stigma from the conversation, and helping society share our view of dementia as a way of living in community.
WHO WE ARE
UBC’s Dr. Alison Phinney and Lakehead University’s Dr. Elaine Wiersma partnered with community leaders in Vancouver and Thunder Bay respectively on the Building Capacity Project. Both sites featured a research team and coordinator paired with a “backbone” community group. The backbone group worked closely with other community groups, organizations, and people with lived experience to form an interconnected web of support. In Vancouver, the Westside Seniors Hub served as the backbone. They are a highly committed group of volunteer professionals connecting people and organizations, spreading word about program offerings. Thunder Bay’s backbone was the North West Dementia Working Group. Comprised of passionate volunteers all living with dementia, the NWDWG was uniquely positioned to listen to, hear, and advocate for people with dementia.
The two teams distributed seed funds and nurtured dementia inclusive opportunities in their communities. The results were inspiring: though each site launched from a different place and context, they both engaged people with dementia and related community organizations in different ways and acted as inspiration for other communities across the country. A rich variety of programs, community ties, and insights about the process emerged in both sites.
Launched in 2019, the Building Capacity Project was the first collaborative initiative of its kind to be set in motion under the Public Health Agency of Canada’s Dementia Community Investment Strategy. The initiative ran through to the end of 2023, at which point we received extended funding to develop an Action Guide based on all that we learned in those four years.
As of September 2023, a cross-province Community Advisory Committee has been established, including researchers, community partners, and advocates with lived experience of dementia. This committee will oversee the development of the guide, offer suggestions, insights, and perspective to a) ensure the working document and all its suggestions centre the voices of people with lived experience, and b) identify the practices and principles that centre those voices throughout the community.
The Building Capacity Project has empowered people and organizations through a unique project approach. People living with dementia were united with community organizations positioned to offer engaging programs. This project helped the organizations make existing offerings more inclusive for those with lived experience of dementia and spurred them to create new initiatives. Programs like these, then, have functioned as stepping stones towards dementia inclusive communities on a broader level. Some of the kinds of organizations involved include: recreation centres, church groups, libraries, seniors’ centres, and neighbourhood houses. The needs and concerns of people living with dementia are always at the heart of everything, as the goal is equitable access for all and opportunities for active and meaningful engagement.
COMMUNITY ACTION HIGHLIGHTS
The Westside Seniors Hub facilitated projects through several unique organizations. Examples include:
a park bench project, which mapped out resting places in the community for those with dementia (Dunbar Residents’ Association)
a buddy program, providing social connection and conversation (Kitsilano Neighbourhood House)
a virtual dementia cafe offered in 2 languages (South Granville Seniors Centre)
a collaborative of outdoor walking groups, gardening clubs, and open-air arts workshops (Several teams working together)
The Northwest Dementia Working Group has supported several key initiatives. Examples include:
Dementia Café A Place to Belong, originally held at Urban Abbey, that went virtual at the onset of the pandemic
a “Living Well with Dementia” conference in Thunder Bay featuring both keynotes and panel-style discussions led by people with lived experience
presentations in Dryden, Ontario to engage those in the region
an analysis of library reading resources on dementia
TRACKING OUR PROGRESS
For the first four years of this project, The Building Capacity Project facilitated, supported, and observed the community-led dementia inclusive programming in Vancouver and Thunder Bay. Through a developmental evaluation approach, the team learned a great deal about how best to support communities to engage people living with dementia and move their ideas into action. By providing individually tailored support and establishing an implementation network based on its hub structure, the Vancouver team helped partners move forward. The Thunder Bay team really saw the benefits of a long-term process that built from the base of the North West Dementia Working Group, which was already established prior to the formal start of the Building Capacity Project. Together, the two teams shared learnings about how to create synergy between lived experience and grassroots community organizations.
Now that we’ve received an extension to our funding, we plan to proceed in two ways:
Develop an Action Guide, co-written by a committee of researchers, community partners, and advocates with dementia.
Expand our community partner support program. Community Research Coordinators and training specialists will be reaching out to other regions of the provinces excited to grow their dementia inclusive programming and culture.
IMPACT OF COVID-19
The pandemic meant the closure of many community programs during the first phase of this project. But galvanized by the vision of more inclusive communities for people with dementia, both the Vancouver and Thunder Bay teams *endeavoured to pursue their goals and plans despite the obstacles. They embraced new safety measures for in-person gatherings and climbed steep learning curves to “go virtual” and find ways of getting outside safely. Despite a few timeline delays, the project is thriving—an undeniable sign of the persistence, resilience, and tenacity of its communities.
A CASE FOR COMMUNITY ENGAGEMENT
Dementia is a growing concern: 76,000 Canadians are diagnosed annually (a number that will increase by 68% over the next twenty years), and they are living with dementia for longer. Our healthcare system is simply not designed to meet the needs of this group.
That’s where a community approach can be a crucial and progressive part of the solution. Building capacity in communities across Canada takes pressure off healthcare services by offering a complementary array of programs that engage people living with dementia at different points along their journey. Program costs are shared across organizations, and grassroots expertise grows to include community professionals and volunteers who provide artistic, civic, social, and physical activities. People living with dementia are part of that pool of expertise, benefiting from bi-directional sharing of teachings and learnings . They gain an enhanced sense of belonging in their community through participation and contribution. They have the autonomy to choose– and be part of designing– programs and services that are personally appealing, and that have their social, cultural, and geographical context in mind. Plus, care partners feel bolstered and supported in their own neighbourhoods by people they know and see regularly at the local coffee shop, rec centre or dog park.
Building capacity in community means empowering people to build on their strengths and passions, to get involved locally in whatever way feels best, to support each other, include each other and learn from one another. People living with dementia, then, feel seen, heard, and appreciated as social and cultural contributors to society– a key to well being for us all.
Informed by research in the health and social science fields,
as well as the experiences of those living with dementia, two key principles guide the Building Capacity Project:
Social citizenship. This means full access and inclusion for people living with dementia to participate in political, social, and civic life.
Asset-based community development. This means building supports from the ground up (rather than the other way around) using strengths and capacities already in place.