Supporting a Circle of Care

An Indigenous-led, culturally specific toolkit for Indigenous caregivers of people living with dementia.

Who could benefit from reading this?

  • Indigenous caregivers of people living with dementia who could benefit from the toolkit.
  • Individuals and community organizations who are interested in sharing Circle of Care with their community or the clients they serve.
  • Individuals and organizations interested in using the lessons learned and recommended resources 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? Indigenous caregivers of people living with dementia

Project Lead: Native Women’s Association of Canada (NWAC)

Project partners: Laurentian University, Schlegel Center for Advancing Seniors Care, Canadian Remote Access for Dementia Learning Experience (CRADLE), Dr. Jennifer Walker (McMaster University), Dr. Danielle Alcock, Nunavut Inuit Women’s Association (North), Six Nations (South), Community liaisons in Saskatchewan (West) and New Brunswick (East)

Project status: complete, 2021-2023

Get in touch:

Native Women’s Association of Canada

Project story

Background:

Within Indigenous communities, care is commonly provided in the person’s own home. The Native Women’s Association of Canada recognized that while caregiving can be rewarding, there are unique needs and challenges experienced by Indigenous caregivers of people living with dementia. The Supporting a Circle of Care initiative engaged with First Nations, Metis, and Inuit community partners and Elders to develop and test a culturally safe and trauma-informed toolkit to provide caregivers with improved understanding and awareness of dementia, strategies for self-care, and approaches for establishing a support network.

Goals:

This project sought to improve the social, cognitive, emotional, physical, and spiritual well-being of Indigenous women, Two Spirit, transgender, and gender-diverse caregivers of people living with dementia by:

  • Increasing awareness and knowledge of coping strategies that promote caregiver well-being and decrease stress
  • Improving awareness and understanding of dementia
  • Improved awareness and knowledge of risk factors for dementia
  • Improved caregiver capacity to understand and address the needs of people living with dementia
  • Improved awareness and knowledge of potential symptoms of dementia

Milestones and achievements:

  • Extensive consultations with participating communities
  • Creation of a toolkit that addresses the unique needs of Indigenous caregivers of people living with dementia
  • Creation and delivery of virtual Sharing Circles to test the toolkit with caregivers and identify areas for improvement
  • Participation in a public webinar and two Dementia Dialogue podcast episode reflecting on the project (Episode 62, Episode 63)

Impact

Project findings:

  • Over 80% of caregivers who reviewed the toolkit and participated in a Sharing Circle reported increased knowledge and/or skills.

Caregivers reported:

  • Improved knowledge about dementia
  • Enhanced levels of support
  • Decreased feelings of isolation

Insights

Lessons learned:

  • The presence of a Knowledge Keeper during Sharing Circles proved to be an invaluable approach for creating a comfortable and culturally safe space for participants to share their experiences.
  • Engaging with Indigenous communities should involve the support of Elders or Knowledge Keepers, who should be compensated for their contributions and expertise, both as a gesture of thanks and as part of the ongoing process of reconciliation.
  • Honorariums, incentives or other forms of financial compensation can improve recruitment and participant engagement and thank participants for sharing their time and lived experiences to improve a resource.
  • Translating materials into Indigenous languages is a valuable investment. This is important for many reasons, notably as part of the ongoing process of reconciliation, and to improve access and uptake of the resource in communities where English is not the most commonly spoken language.
  • Building evaluation components into the group activities can help motivate participants to provide feedback, rather than requesting that participants provide feedback on their own after the session is over.

Recommended resources:

The team who developed this initiative identified several resources that were helpful, including:

Many post-secondary institutions and community organizations have policies and guidelines for working with Elders and Knowledge Keepers, including:

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

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