Overview

The Our Dementia Journey Journal (ODJJ) is an interactive tool that was co-designed with and for people living with dementia, their family/friend caregivers, and their health care providers to:

1. Help foster sustainable relationships between health care providers and family/friend caregivers by offering a safe space to connect, share and reflect. 
2. Allow the Circle of Care to (re)negotiate their respective roles as the circle and/or setting of care changes along the dementia journey.

The ODJJ is part of a larger research project conducted by the SE Research Centre and funded by the Public Health Agency of Canada (PHAC) and SE Health to determine how to best implement the tool in diverse communities. This includes continuing care facilities in Alberta, First Nations communities across Canada and South Asian communities in Ontario. The findings of this project will inform a sustainability plan, marketing plan with the aim to make the ODJJ accessible to all Canadians after the PHAC funding ends.

The Circle of Care

The Circle of Care is made up of the person living with dementia, their family and friends in caregiving roles and health care providers such as personal support workers, nurses, doctors, and others. Realizing the lack of available resources for caregivers and care providers, the ODJJ was created to focus on these interactions as they work to support the person living with dementia (See image above). The ODJJ enables caregivers and health care providers to exchange meaningful information about physical, functional, and social care and support to optimize their respective knowledge of and about the person living with dementia.

Features of the ODJJ

• Pose and answer questions
  • Keep a record of questions you may have for your next appointment with a health care provider so that you don’t forget
• Get to know and communicate with the rest of your Circle of Care
  • You can share photos and important things about you with other members so that you understand each other on a more personal level

• Track your well-being
  • Keep track of your wellness so you know when you need a break

• Journal and reflect
  • Use the space to jot down feelings, notes, reflections you have - like a diary!

• Collect useful tools along the journey
  • Whether it’s resources from the Alzheimer’s society, key contacts, or other information, you can easily build a resource section that serves your individual needs

ODJJ Formats

• Paper-based
• Mobile Application (iOS & Android mobile and tablets)

Languages

The ODJJ is available in English, French, Hindi, and Punjabi.

Versions

1. The Generic Version (for general population use) - English or French
2. First Nations Version
3. South Asian Version (English, Hindi or Punjabi)

For any information on the ODJJ project or to download the app, please contact the Project Manager, Paige Fernandes at PaigeFernandes@sehc.com. 

You can also read more about the project here.