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.

The Our Dementia Journey Journal is a tool that was co-designed by people living with dementia, their care partners and providers and researchers from SE Research Centre.

The dementia journey is full of changes, including changes in function, care needs and the number and type of care providers involved in an individual’s care. The role of family and friend caregivers and care providers changes over time, so strong communication tools are needed so that everyone involved can work their best together. The Journal was developed in paper format over several co-design workshops to help caregivers, care providers and people living with dementia communicate and work even better together. 

The initial prototype was shared with three First Nations communities in northern Ontario and one community in British Columbia for their feedback on how to make the journal more culturally relevant. An electronic version has since been created to trial in several communities, including francophone, rural, remote and isolated communities in order to get a variety of perspectives. The prototype will continue to be improved based on their feedback and communities will be invited to try the resulting journal. The ultimate goal of the project is to improve the lives of people living with dementia, their caregivers and care providers.

Who is this project for?

This project was created in response to a need identified by persons living with dementia, caregivers and care providers. The audience for this tool is family and friend caregivers of people living with dementia and their care providers, who work in a variety of care settings and communities. Individuals living in First Nations communities have been engaged for their feedback, in addition to individuals in a predominantly rural community in British Columbia. 

3 Key Takeaways

  1. Our Dementia Journey Journal is an interactive resource that enables sustainable relationship building between caregivers and care providers of persons living with dementia through information-sharing and care-role negotiation along the dementia journey.
  2. We used the participatory research to action (PR2A) framework to ensure the Our Dementia Journey Journal was conceived, developed, designed and adapted in partnership with persons living with dementia, their caregivers and care providers. This bottom-up approach prioritized lived experiences to enhance potential for real-world applicability, and sustainable, measurable, and scalable impact. 
  3. To meet the diverse needs of persons living with dementia, their caregivers and care providers, and at their explicit recommendation, Our Dementia Journey Journal is available as a mobile app, a digital file, and an analog tool.

Project Details

Duration: 2019-2022

Project Team:

  • Paul Holyoke, Director, SE Research Centre

  • Justine Giosa, Manager, Research Operations, SE Research Centre

  • Valentina Cardozo, Research Associate, SE Research Centre

  • Doris Warner, Community Engagement Consultant, SE First Nations, Inuit and Métis Program

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