Building Capacity for Meaningful Participation by People Living with Dementia

Who is this project for? People living with dementia and their care partners and the community at large, including community organizations that provide support and programming for older adults

Project Lead: University of British Columbia and Lakehead University

Project partners: Westside Seniors Hub and the North West Dementia Working Group

Project status: complete, with phase 2 underway (2023-2025)

Get in touch:

Dr. Alison Phinney, University of British Columbia

Dr. Elaine Wiersma, Lakehead University

Background:

Driven by a commitment to inclusivity and empowerment, researchers from University of British Columbia and Lakehead University collaborated with local organizations to create, foster and sustain opportunities for people living with dementia and care partners to maintain engagement within their communities. Acknowledging the unique challenges and strengths in each community, this project used an asset-based community development approach to support initiatives in arts, social participation, fitness, and volunteering. Beyond introducing new programs, this project explored how to adapt and improve established resources, such as existing programming in community and seniors centres, to create communities and spaces that are inclusive of people living with dementia.

Goals:

To improve the well-being of people living with dementia by supporting and creating opportunities to remain active and socially connected by:

• Creating community-led initiatives and events that engage, support and empower people living with dementia
• Supporting and empowering partner organizations to build their capacity to offer inclusive programming and services
• Developing educational materials and resources to promote understanding, inclusion and reduce stigma
• Identifying, evaluating and sharing practices and approaches to make communities more dementia-inclusive

Lessons learned:

• Building and maintaining relationships with individuals, communities, and organizations is essential for initiatives like Building Capacity. This relationship building requires time, flexibility, and commitment to building lasting partnerships.
• Stigma is a barrier to creating dementia-inclusive spaces. By fostering community dialogues and promoting awareness about dementia and its associated stigma, organizations can begin initial steps toward enhancing their capacity to deliver inclusive support and services.
• Leveraging the established partnerships and structures of partner organizations, such as utilizing the existing physical space, practices, and partnerships of a seniors centre or community gathering space, can allow initiatives to be trialed and can open doors to potential additional partnerships. The development of additional partnerships can be supported by making intentional connections and encouraging collaboration between partners.
• Prioritize activities and initiatives that promote and build on participant’s feelings of enjoyment, social connection, and sense of belonging.
• When implementing new initiatives, flexibility, and a willingness to trial approaches is helpful and allows work to progress, rather than waiting for ideal conditions. Taking small steps then reflecting on the success of the approach is recommended.
• Community development coaching provides invaluable support by empowering communities and organizations to identify their individual and shared goals and leveraging available resources to create mutual support. This approach can be facilitated by a backbone organization to guide and coordinate efforts, maximizing impact and sustainability.
• Champions are extremely valuable, including at the organizational level to promote the cause, as well as people who are living well with dementia who can decrease stigma and act as role models for new members.