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:
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:
- 45 family caregivers shared insights and feedback through focus groups across Alberta, Manitoba, Saskatchewan and Ontario
- 234 participants were given access to the toolkit and engaged in telephone interviews, assessing the toolkit’s effect on hope, self-efficacy, grief, social support, loneliness, and quality of life
- Creation of a culturally relevant French version of the toolkit, supported by:
- Use of the toolkit for 2 weeks by 12 French-speaking caregivers, followed by focus groups to capture their feedback and revisions to the toolkit based on their feedback
- A feasibility study with 18 French-speaking caregivers to evaluate the acceptability and feasibility of the translated toolkit
- Delivery of public webinars and knowledge sharing events to share findings and raise awareness of the toolkit
- Creation of infographics and promotional videos demonstrating the impact of My Tools 4 Care-In Care:
- My Tools 4 Care-In Care Promotional Video (also available in French)
- My Tools 4 Care-In Care Promotional Video (short version)
- Phase 2 infographic
- Phase 3 infographic
- Creation of videos for inclusion in the toolkit that capture a caregiver’s journey when a family member lives in long term care:
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).