Building Capacity for Meaningful Participation by People Living with Dementia

Promoting the full social citizenship of people living with dementia through practical resources and approaches, collaborative community programs and partnerships.

Who could benefit from reading this?

  • Community organizations who want to improve the inclusion of people living with dementia in their existing programs or programs being developed.
  • People living with dementia or care partners in Vancouver, BC and Thunder Bay, ON who would like to become involved in initiatives developed through this project or develop similar initiatives.
  • Individuals and community organizations who want to use the lessons learned and resources developed from this project to create or modify a similar program.

Review the Before you begin section for foundational knowledge that will be helpful for any dementia community initiative.

Key information

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

Project story

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

Milestones and achievements:

Development of resources, tools and knowledge mobilization products:

Creation of new dementia initiatives, including events offered weekly, bi-weekly and monthly:

  • Dementia Sisterhood facilitated peer support group
  • Dementia Ventures events
  • Happy Memories Café, offered in Spanish and English
  • Tablet lending program
  • Fireweed Club, a regular social gathering in the summer months
  • Gardening workshop series

Special events including:

  • Intergenerational storytelling event with Vancouver poet laureate Fiona Tinwei Lam
  • End of Year community celebrations
  • Field trips

Training, education and awareness initiatives:

  • Adaptation of the Flipping Stigma toolkit into a community training initiative used to train staff and 200+ volunteers from senior day centers, church groups and community gathering spaces (such as Neighborhood Houses)
  • Memory buddy training
  • Dementia and stigma awareness for Vancouver Public Library staff, in partnership with the Alzheimer Society of British Columbia
  • Bilingual (Mandarin and English) workshops, dementia education and training including topics of brain health and stigma

Support and capacity building of ongoing initiatives including:

  • Monthly North West Dementia Working Group (NWDWG) meetings
  • Dementia Café (held several times a month)
  • Taking Control of Our Lives facilitated peer support group

Impact

Project findings:

Community partners (including seniors centres, community centres and religious organizations) experienced:

  • Increased understanding of dementia and the impact of stigma
  • Improved capacity and confidence to be supportive and inclusive of community members living with dementia

People living with dementia and care partners experienced:

  • Increased feelings of social inclusion
  • Improved well-being

Insights

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.

Recommended resources:

 

Toolkits and guides:

Organizations:

Dementia Dialogue podcast, including episodes:

Webinars and videos:

This project was funded by the Public Health Agency of Canada under the Dementia Community Investment (DCI).

Scroll to Top