Finding the right resources at the right time is a crucial need for people affected by a chronic illness. But what if there was a tool that helped you do exactly that? Heather Barnhouse, Beth Mansell, and Johnna Lowther are working hard to change the experience of what it’s like to care for and support someone living with the dementia diagnosis. As Beth sincerely states in this interview:
“You see so many people who are in that caregiver role for someone living with dementia and it’s breaking them down. We want to change that.”
This team is working with software developers to create a platform that can intelligently reduce stress for people who are providing care or assistance to someone living with dementia in a home-based setting. On our episode today, we are going to talk about this innovative technology platform and why we think it can make a difference in the lives of all those who are affected by dementia. Whether you’re part of a circle of family and friends supporting someone living with this diagnosis, or living with dementia and trying to balance the logistics and practicalities of care management, we hope this platform will help.
The tool is intended to help users navigate the available resources and supports within their local community at appropriate times throughout the dementia diagnosis. Anticipating future needs of a progressive illness is stressful and challenging. The tool can help ease this burden by using a symptom tracker for the dementia care recipient that correlates to specific resources and educational materials for the caregiver. It will also utilize wellness tracker mechanisms to help a caregiver monitor stress and anxiety and manage their own self-care. Lastly, it will also allow users to include other secondary caregivers as part of their care team on the platform to encourage coordinated continuity of care in an integrated manner.
We’re pretty excited about this project and if it’s got you interested too, see our Action Steps below!
- If you want to know more about Tusk – the Caregiver Navigation Tool, go to dementiaassociation.ca
- We are looking for users to test this first initial stage of the platform and inform further research and design. Please reach out if you want to be a part of testing the tool in Edmonton, Alberta.
- We also need more important resources and educational information to include on the platform. Information that would help users better understand the diagnosis – or help reduce negative stereotypes. If you’re aware of a specific resource, tool, or intervention that has made a difference in your dementia care journey, we want to hear about it.
- Another piece to this puzzle surrounds the need for interventions that can offer opportunities for purpose, meaning, and engagement for persons living with dementia. I think this is a whole different episode in the making, but this is a huge need that we, as a community of dementia advocates, need to help solve. Again, please share comments and suggestions on that matter via our comments section below – or on our social media pages – or email us directly at email@example.com
- Lastly, we are also looking for people, companies, or private investors who might be willing to further support the development of this tool, post-beta testing. If that’s you or someone you know, again, please reach out through the website: dementiaassociation.ca
We are a dedicated team working hard to come up with solutions and offer support to people and communities affected by dementia. Thanks for tuning in.
Join us next time on Life With Dementia, the solution-driven podcast sharing relevant research, personal stories, and practical tips for living well with dementia.
Tune in through Spotify, Stitcher, or Apple podcasts, or stream live on our website, which is lifewithdementiapodcast.com. If you like what you read (or heard), please tell other people about it and share us on social media.
Podcast episode music by Blue Dot Sessions “OneEightFour”