Objective:

The goal of My Tools 4 Care – In Care is to support family caregivers of persons with dementia through transitions when their family member resides in a long term care facility.

What is My Tools 4 Care – In Care?

My Tools 4 Care – In Care is a free, web-based, interactive transition toolkit designed specifically to support the needs of family caregivers and to increase their hope and decrease loneliness and grief.

  1. Family Caregivers of persons with dementia residing in LTC worked with the research team to identify what would help them with the significant changes they experience
  2. My Tools 4 Care-In Care was then developed based on the needs of family caregivers
  3. A pilot test of My Tools 4 Care-In Care was conducted and found to be feasible, acceptable and easy to use
  4. Now we want to further evaluate My Tools 4 Care-In Care with the help of family caregivers across Canada

Methods:

Phase One: Focus groups will be conducted in 4 provinces (Alberta, Saskatchewan, Manitoba & Ontario) to revise My Tools 4 Care-In Care. Ten to 12 participants will be recruited in each province (two focus groups with 5-6 participants per focus group). Interviews will utilize an interview guide to:

  1. Discuss whether MT4C-In Care provides social support and addresses loneliness
  2. Assess participants’ perceptions of additional content related to support for end-of-life caregiving and bereavement
  3. Discuss barriers and facilitators to using the MT4C-In Care

Phase Two:  Family carers of persons with dementia residing in long term care will evaluate My Tools 4 Care-In Care to determine if it improves their health, hope and decreases grief and loneliness compared to those not using it. The purpose of Phase 2 is to implement and evaluate MT4C-In Care to assess its effectiveness, and the influence of participant factors (i.e., gender, cultural background, age, etc.) on the use of MT4C-In Care across four Canadian provinces (Alberta, Saskatchewan, Manitoba, and Ontario). The ability of MT4C-In Care to improve hope, self-efficacy, quality of life, and mental health, and decrease grief and loneliness will be rigorously assessed in a pragmatic effectiveness trial with a large sample. The rigorous pragmatic trial with an in-depth mixed methods in Phase 2 will demonstrate whether MT4C-In Care works across four Canadian provinces as well as the reasons and mechanisms underlying its effects. MT4C-In Care will be updated based on pragmatic trial results in Jan-Feb 2022.

Participants: Total of approximately 280 participants from four provinces will be recruited (100 each from Alberta and Ontario and 40 each from Saskatchewan and Manitoba). Recruited participants will be randomly assigned to the intervention and control group (140 participants each group).

Phase Three:  A Francophone version will be developed and tested for feasibility, ease of use and acceptability.

Team:

Provincial Leads: Drs. Wendy Duggleby and Hannah O’Rourke (AB), Pam Baxter (ON), Shelley Peacock (SK), Genevieve Thompson (MN), and Veronique Dube (QC).

Collaborators: Alzheimer Society of Alberta and Northwest Territories (Arlene Huhn), Erin Crawford (Alzheimer Society of Manitoba), Alzheimer Society of Saskatchewan (Joanne Michael), Institute for Continuing Care Education and Research (Sandra Woodhead Lyons), Support Program for the Autonomy of Seniors (Ginette Senez), Shalom Village (Jeanette O’Leary)

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