What is this project about and why is it important?

This project is supported by the Canadian Dementia Learning and Resource Network at the Schlegel-UW Research Institute for Aging (RIA) and funded by the Public Health Agency of Canada under the Dementia Community Investment (DCI). These funded projects are actively developing and testing tools, resources, and approaches to promote the well-being of persons living with dementia and care partners.

My Tools 4 Care-In Care is an online intervention that aims to improve the wellbeing of family and friend caregivers who are supporting someone living with dementia who lives in a long term care home. 

This project provides an easily accessible way for caregivers  to access resources and complete interactive activities to enhance their own health and wellbeing. This intervention is based on My Tools 4 Care, which was developed for caregivers of people living with dementia residing in the community. The project team was approached by caregivers of people living with dementia who reside in long term care to adapt the intervention for their use. Users are able to complete activities at their own pace and decide for themselves which activities will be helpful to them. This project is important because it helps address the unique needs of caregivers who are supporting someone living with dementia who resides in a long term care home. 

Who is this project for?

This intervention was created to support family and friend caregivers of people living with dementia who are living in long term care. Participants who have trialed the tool live in Alberta, Saskatchewan, Manitoba, Ontario and Quebec.

Resources this project has created

3 Key Takeaways

There are three key takeaways from the first phase of this project (focus groups with caregivers), where revisions to the tool were made to ensure it reflected caregiver needs for social support to address feelings of loneliness as they experience transitions:

  1. Caregivers experience transitions when the person they care for resides in long term care. They may go through a process of “building a new life” to help deal with these transitions. This process includes building new relationships (with their family member, long term care staff, and those outside of the long term care home) and finding space for themselves.
  2. When the person with dementia resides in long term care, family caregivers continue to take part in caregiving, yet, experience feeling alone (loneliness) and being alone (social isolation).
  3. Factors that exacerbate feelings of loneliness and social isolation include caregivers suddenly being alone at home, having limitations on their time and freedom, and being excluded from decision making around care. Having access to a community of support may help with loneliness and social isolation.

Phase 2 (the pragmatic trial) is ongoing and the results from our analysis of the effectiveness of MT4C-In Care will be included here as they become available.

 

Project Details

Duration: 2019-2023

Organization Lead(s): University of Alberta Faculty of Nursing

Project Team:

  • Dr. Jenny Swindle, Research Coordinator

  • Dr. Hannah O’Rourke, Project Lead

  • Dr. Wendy Duggleby, Project Lead

  • Dr. Pamela Baxter, Provincial site lead (Ontario)

  • Dr. Shelley Peacock. Provincial site lead (Saskatchewan)

  • Dr. Genevieve Thompson, Provincial site lead (Manitoba)

  • Dr. Véronique Dubé, Provincial site lead (Quebec)

  • Steven Hall, Knowledge Translation (KT) specialist

Project Partner(s):

Research team members:

  • Sunita Ghosh (Alberta)
  • Jayna Holroyd-Leduc (Alberta)
  • Cheryl Nekolaichuk (Alberta)
  • Carrie McAiney (Ontario)

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