My Tools 4 Care-In Care

Online toolkit designed to address the unique needs of family and friend caregivers supporting people living with dementia in long-term care homes.

Who could benefit from reading this?

  • Caregivers of people living with dementia in long term care who may want to use the online toolkit
  • Service providers, long term care homes and community organizations who could recommend the toolkit to caregivers of people living with dementia in long term care
  • 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? Family and friend caregivers supporting people living with dementia in long-term care homes

Project Lead: Led by the University of Alberta’s Faculty of Nursing and a research team including Drs. Hannah O’Rourke, Wendy Duggleby, Pamela Baxter, Shelley Peacock, Genevieve Thompson, Véronique Dubé, Sunita Ghosh, Carrie McAiney, Jayna Holroyd-Leduc, Cheryl Nekolaichuk and Jennifer Swindle

Project partners: Alzheimer Society of Alberta and Northwest Territories, in addition to an advisory committee composed of representatives from Alberta, Saskatchewan, Manitoba, Ontario, Quebec

Project status: complete, 2019-2023

Get in touch:

My Tools 4 Care-In Care team

Project story

Background:

Family and friend caregivers who are supporting individuals living with dementia in long-term care homes have unique needs and challenges that are often overlooked. An existing research-based toolkit (My Tools 4 Care, designed for caregivers of people living with dementia residing in the community) was adapted to cater specifically to these often-overlooked caregivers. This adaptation includes relevant resources, personal stories, Frequently Asked Questions and interactive activities designed to enhance the health and resilience of caregivers who are supporting individuals living in long-term care.

Goals:

The well-being of caregivers can be enhanced by meeting their unique needs, which can ultimately contribute to improved quality of life for both people living with dementia and their caregivers. My Tools 4 Care-In Care empowers caregivers to:

  • Navigate transitions
  • Advocate effectively
  • Manage emotions
  • Make informed decisions

Milestones and achievements:

Impact

Project findings:

By using the toolkit, caregivers reported that:

  • Their well-being improved
  • Their knowledge and skills improved
  • Their mental health improved

The My Tools 4 Care-In Care resource is available online in French and English through the ASANT Cafe.

Experiences:

  • “It reassures us in our situation. We can see that it’s all about us, it puts words to situations, emotions, feelings, experiences in everyday life, in the concrete. It puts words on the difficulty, it clears the way a lot.” – Caregiver
  • “It helps me to be able to access the sharing of other people’s experience, in the videos among others, there is like a mirror effect, I recognize myself. It validates a lot in a way the feeling and the questioning.” – Caregiver

Insights

Lessons learned:

  • Translation to French: translation into another language can be a complex process, not only for the word choices but for technical considerations when a product is web-based.
  • Translation requires using user-friendly and culturally appropriate language which can prompt multiple rounds of revisions to ensure alignment with the dementia and caregiving community's needs. This project team ultimately included additional focus group interviews to ensure the translation was accurate and met the needs of their target audience.

Recommended resources:

The Program Sustainability Assessment Tool (PSAT) was found to be particularly valuable in planning for the sustainability of this initiative.

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

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