HISTORY OF THE ODJJ

The Our Dementia Journey Journal (ODJJ) was developed to support caregivers, healthcare providers, and individuals living with dementia by fostering connection, communication, and person-centered care. Rooted in collaboration, the ODJJ has evolved through research, cultural adaptations, and real-world implementation to better serve diverse communities across Canada.

The Origins of the ODJJ

In 2017-2018, the SE Research Centre, in collaboration with the Alzheimer’s Society of Canada, caregivers, and care providers, identified a critical gap in dementia care resources—specifically, a need for a tool to improve communication and care coordination.

To address this, the SE Research Centre launched an 18-month initiative, engaging 26 caregivers and care providers in Ontario. Using a six-phase Participatory Research to Action (PR2A) process, the team co-designed a user-friendly solution tailored to the real needs of those navigating the dementia journey.

A Collaborative Approach

Dementia care is constantly evolving journey, impacting not only individuals living with dementia but also their caregivers and care providers. The Our Dementia Journey Journal (ODJJ) was created to strengthen communication, relationships, and care coordination within this circle of support.

Developed in collaboration with caregivers, healthcare providers, and community members, the ODJJ helps document changes, share essential information, and promote person-centered care. Through research and innovation, it has grown into a versatile resource available in multiple formats, languages, and culturally adapted versions for First Nations and South Asian communities across Canada.

ODJJ Original Cover Page

Co-Designing the First Prototype

A crucial element of the ODJJ’s development was its co-design approach, which brought together caregivers, healthcare professionals, and community stakeholders to help shape its contents and functionality. Through a series of six workshops, participants shared insights into their daily experiences, highlighting what they needed in a dementia care resource. 

The result was a paper-based prototype—a comprehensive journal that included tools for: 

  • Tracking symptoms and behavioral changes 
  • Recording personal histories and preferences of PLWD 
  • Documenting questions and answers between caregivers and care providers 
  • Engaging in creative activities such as joy journaling and care collages 
  • Assessing well-being and identifying early warning signs of dementia progression 

Following the foundational prototype, the next step was to bring the ODJJ into the real world and assess its impact. As part of our Aging in Society research portfolio, we are continuing to apply the final two phases of the Participatory Research to Action (PR2A) framework—Deliver (implementation) and Measure (evaluation)—to ensure the ODJJ can be effectively used across diverse communities in Canada. 

Cultural Adaptations and Community Engagement ​​

As the ODJJ prototype took shape, we recognized the importance of adapting it to reflect the diverse cultural backgrounds and caregiving experiences of those impacted by dementia.

Dementia care is deeply influenced by traditions, language, and community structures, suggesting that a one-size-fits-all approach would not be effective.

To address this, we formed relationships with First Nation and South Asian communities to co-create culturally relevant versions of the ODJJ. Community members played a vital role in shaping these adaptations, which were then translated into English, French, Hindi, and Punjabi.

The ODJJ In Communities Across Canada

The ODJJ in South Asian Communities: 

The ODJJ was trialed in South Asian communities through partnerships with Indus Community Services and Punjabi Community Health Services in Southern Ontario. It proved to be a valuable tool for documenting, tracking, and communicating care needs, helping caregivers share important updates related to behavioral changes, health concerns, and daily routines.

By bridging gaps between home care and adult day programs, the ODJJ supported care consistency, improved engagement, and better mood management. As a centralized communication tool, it provided a shared space for care teams to stay aligned and refer back to essential information. Feedback from these pilot programs also contributed to refining the tool to ensure it was practical and accessible.

The ODJJ in First Nations Communities: 

In collaboration with the SE Health First Nations, Inuit, and Métis Program, we invited community members from Indigenous Friendship Centre of Sault, Ste. Marie, Garden River, Thessalon, and Sagamok Anishnawbek First Nations in the North Shore region of Ontario to participate in a 4-month trial of the ODJJ. This collaboration upheld and respected the principles of Ownership, Control, Access, and Possession (OCAP), ensuring First Nation communities have full authority over their data in respect of their sovereignty and self-determination. Feedback from these trials was incorporated to refine the tool for culturally appropriate and meaningful use.

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The ODJJ in Continuing Care Homes 

From March to August 2024, the Our Dementia Journey Journal (ODJJ) was introduced in two Alberta continuing care homes—Millrise Seniors Village in Calgary and Taylor View Towers in Red Deer. This pilot demonstrated the journal’s profound impact in strengthening relationships, improving communication, and enhancing dementia care. 

Caregivers found that the ODJJ facilitated more efficient and meaningful exchanges with staff, ensuring that residents’ needs, preferences, and experiences were better understood. They also reported a deeper recognition of residents’ individuality, helping them practice more personalized and compassionate care.

Community Implementation Across Canada

To tailor the implementation for different care settings, we collaborated with J5, a service design company, to create a structured rollout plan customized for each community. The implementation phase began in March 2024 with two Continuing Care Homes in Alberta, and by summer 2024, the plan was adapted and introduced in two Northern Ontario First Nations communities and three South Asian communities in Ontario. 

At the heart of this implementation process is a Project Advisory Committee (PAC), which meets monthly to guide the various components of the project. This committee included persons living with dementia (PLWD), caregivers and care providers, researchers from the SE Research Centre, and representatives from community organizations actively involved in dementia care. 

Scaling Up for Future Impact

Through years of collaboration, trials, research, and refinement, the ODJJ has proven its worth effectiveness in enhancing person-centered dementia care. It can foster stronger connections, deeper understanding, and a more collaborative approach. Its success so far gives us the confidence for wider implementation across Canada, helping more caregivers, care providers, and PLWDs adopt this free, publicly available resource.
 
By fostering stronger connections, deeper understanding, and a more collaborative approach to dementia care, the ODJJ is not just a journal—it is a lifeline for those navigating the complexities of dementia care.

How is this research funded and supported? 

The research that supported the development of the ODJJ was funded by the Public Health Agency of Canada under its Dementia Community Investment Program, and by SE Health, one of Canada’s largest social enterprises.
We would like to gratefully acknowledge the contributions from the Elders and community members from Sagamok and Thessalon First Nations, Sault Ste Marie Indigenous Friendship Centre, Bloomington Cove, and all other individuals across Canada who participated in the co-design and trial of Our Dementia Journey Journal.

Join the ODJJ Community!

Be part of a growing network of caregivers, healthcare providers, and individuals impacted by dementia. The ODJJ Community is a space where real stories are shared—stories that highlight how the Our Dementia Journey Journal is being used in homes, care settings, and community programs across Canada.

Here, you’ll find key messages that inspire, encourage, and educate, as well as practical examples of how the journal is making a difference. From innovative caregiving approaches to cultural adaptations in diverse and multicultural communities, the ODJJ Community celebrates the many ways people are using the journal to support more connected, person-centered dementia care.

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