Our Dementia Journey Journal

An interactive tool that enables sustainable relationship building between care partners and care providers of persons living with dementia through information-sharing and care-role negotiation along the dementia journey.

Who could benefit from reading this?

  • People living with dementia, their care partners and care providers who work in a variety of care settings and communities who could benefit from using the Our Dementia Journey Journal.
  • Members of Indigenous, Francophone and South Asian communities seeking a culturally relevant tool to support their own dementia journey or the journey of someone they care for.
  • 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? People living with dementia, family and friend care partners of people living with dementia and care providers, (including home care and long term care settings)

Project Lead: SE Research Centre

Project partners: Representatives from First Nation and South Asian communities across Ontario , representatives from Indigenous communities across British Columbia

Project status: complete, DCI funding (2019-2022) is complete, with phase 2 underway (2023-2025)

Get in touch:

Valentina Cardozo, Research Associate, SE Research Centre

Project story

Background:

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 roles of family and friend care partners and care providers change over time. The Our Dementia Journey Journal (ODJJ) is an interactive resource designed to address these changing needs and roles by improving how people living with dementia, care partners and care providers build relationships, communicate, share information, negotiate care roles and ultimately work together. The first prototype of the ODJJ was developed through six co-design workshops with care partners and care providers in a long-term care home in Ontario. The Journal has a variety of versions to meet the needs of different communities, including translated versions in English, French, Hindi and Punjabi, a First Nations version and a generic version. The ODJJ also includes sections for recording questions and answers between care partners and providers, an “All About Me” worksheet, a well-being log and assessment, information on dementia warning signs, symptom tracking, creative activities including joy journaling and care collages, and a collection of extra resources.

Goals:

The ultimate goal of Our Dementia Journey Journal is to enhance the lives of people living with dementia, their care partners and care providers. In particular, it aims to:

  • Facilitate care role negotiation and relationship building through information sharing
  • Improve relational, management, and information continuity
  • Improve the mental health and quality of life of people with dementia, care partners and care providers
  • Improve health care provider satisfaction and retention

Milestones and achievements:

  • Creation of an electronic (fillable PDF) version of the ODJJ
  • Cultural adaptations as a result of field testing of the ODJJ in First Nations communities in Northern Ontario and British Columbia
  • Cultural and language adaptations and field testing of the ODJJ in Francophone and South Asian communities, including versions in English, French, Hindi and Punjabi
  • Identification of the need for a mobile application of the ODJJ (in development)

Impact

Project findings:

Participants involved in the development and field testing of the Our Dementia Journey Journal reported:

  • That their experiences/ideas/opinions were heard in the workshop (91-100% always felt or mostly felt)
  • That their participation will change how persons living with dementia, their caregivers and health care providers work together (88-100% always felt or mostly felt confident)
  • That cultural and language adaptations of the ODJJ would change how persons living with dementia, their care partners and health care providers work together

Want to know more? Download this supplementary resource outlining the data collection methods, the evaluation evidence and the tools used.

Experiences:

“I found it to be useful to be able to connect with my mom on how she feels about this journey” – Care Partner

“I thought the journal was beneficial for [the person living with dementia] to reflect on and record important memories and I can also see how it would be beneficial in supporting communication between family and their care providers.” – Care Provider

Insights

Lessons learned:

  • Partnership with community liaisons in the targeted First Nations communities was indispensable to this project’s success. These liaisons brought profound understanding of the community’s needs which allowed the project team to tailor their approach in each community, build trust, and conduct culturally safe workshops, leading to co-designed outcomes that are tailored to address the community’s specific contexts and needs.
  • Flexibility and adaptability are essential when partnering with different communities. For this project, the evaluation plan was adapted to collect evaluation data through interviews, rather than surveys, which better met the needs of the community. Recruitment approaches were also modified to include opportunities to participate virtually, lessening barriers to participation for communities that are geographically dispersed.
  • Involving end users in the design process throughout is important for ensuring that the end result meets the user’s needs. For this project, this involvement resulted in adapting the tool to be available digitally and selecting culturally appropriate language and terminology to be used in the tool.

Recommended resources:

The following resources are recommended by the team who developed this program:

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

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