Workpackage 2: Understanding the Needs of Caregivers

Family caregivers are critical to the health and support of older people. The aim of this research theme is to gain better insight into how to better support caregivers. Our goal is to support the development of novel technological solutions that can provide more effective and efficient care; reduce the burdens and consequences of care, and also enhance the quality of life of caregivers. We are developing strategies to assist caregivers in making more informed decisions on the selection of technologies. 

Workpackage 2 YouTube Channel

Core ResearchCatalyst ProgramStrategic Investment Program
Innovative Technology for Caregivers – Workpackage 2.1 INToCARE

This project is surveying caregivers and creating personas that illustrate caregiver needs. The team works with caregivers as active partners and has a crowdsourcing website of caregiver personas for technology developers, clinicians and other caregivers to identify existing and novel solutions.

Award Term: April 1, 2015 - March 31, 2020

AGE-WELL NCE Investment: $402,303

Total Non-NCE Contribution: $39,182

Project Leads
  • Ben Mortenson, University of British Columbia
  • Francois Routhier, Université Laval
Portal for the Systematic Monitoring and Training of User-Caregiver Dyads after Provision of Assistive Devices – Workpackage 2.2 MovIT-PLUS

This project aims to help older adults and their caregivers in using assistive technologies (AT) such as canes, walkers, wheelchairs or scooters. The team is refining a web-based system that allows caregivers to monitor AT use from multiple devices and access ongoing training on how to use AT with older adults.

Award Term: April 1, 2015 - March 31, 2020

AGE-WELL NCE Investment: $ 575,916

Total Non-NCE Contribution: $ 5,216,772

Project Leads
  • Sara Ahmed, Research Institute of the McGill University Health Centre
  • Claudine Auger, Université de Montréal
Online Assistive Technology Rating and Recommending System for Caregivers – Workpackage 2.3 CARE-RATE

The CareRate project is developing an online tool that connects caregivers to products they need to support themselves and older adults with dementia. CareRate uses natural language processing and artificial intelligence to present simple "yes/no" questions that rapidly refine search results to target relevant information to help caregivers find what they are looking for more quickly. 

Award Term: April 1, 2015 - March 31, 2020

AGE-WELL NCE Investment: $ 415,800

Total Non-NCE Contribution: $ 49,042

Project Leads
  • Jennifer Boger, University of Waterloo
  • Frank Rudzicz, Toronto Rehab Institute/University of Toronto
Assistive Technologies that Care for the Caregiver – Workpackage 2.4 ATforCC

This project studies caregivers’ needs and goals and how assistive technology can impact their lives - do they help or hinder? The study’s findings are helping inform evidence-based policy decisions, NGO advocacy efforts and the successful development and adoption of AGE-WELL products.

Award Term: April 1, 2015 - March 31, 2020

AGE-WELL NCE Investment: $ 456,958

Total Non-NCE Contribution: $ 150,511

Project Leads
  • Janet Fast, University of Alberta
  • Norah Keating, University of Alberta
Understanding how to Appropriately Support Indigenous Families with Dementia through Digital Storytelling: A Community-based Approach – Workpackage 2.8-CAT

First Nations (FN) populations in Canada are rapidly aging and chronic diseases are epidemic. Dementia rates reported to be 34% higher in Indigenous compared to non-Indigenous people may be explained by the earlier onset of multiple chronic conditions (MCC) that have been linked to increased risk for dementia. Compared with non-Indigenous Canadians, Indigenous people experience more severe health, social and economic issues. Health inequities lead to onset of multi-morbidity at a much younger age in Indigenous persons and are further complicated by the challenges of healthcare delivery to rural and remote communities and potential inequities in access to health care.

Digital storytelling is a form of digital media production that allows everyday people to share aspects of their life story. The method aligns with the Indigenous ways of knowing. “Story is a practice in Indigenous cultures that sustains communities, validates experiences and epistemologies, and expresses experiences of Indigenous peoples, and nurtures relationships and the sharing of knowledge. Storytelling is also a central focus of Indigenous epistemologies, pedagogies, and research approaches.” Storytelling and the value of interpretative ethnography as a research method are shaping the emerging culture of translational research. The media used may include the digital equivalent of film techniques, stills, audio only, or any forms of material that exists only as electronic files, which individuals can use to tell a story or present an idea.

The purpose of this project is to introduce Digital storytelling as a technology to facilitate knowledge-sharing around common caregiver experiences and patterns through storytelling. Digital storytelling will then be integrated into the training sessions for caregivers and as tools to promote community-driven models to address the emerging health issues related to dementia diagnoses for Indigenous peoples in Canada. We will measure the impact of Digital storytelling in the development of community-driven dementia care models.

Digital storytelling (McElaney) “Telling their Story"

Project Leads
  • Janet McElhaney, Health Sciences North Research Institute
Developing User-Centred Digital Supports for Informal Networks that Provide Care for Elders: A Co-Design Approach – Workpackage 2.9-CAT

Informal care networks provide the majority of care to a growing population of Canadian elders. The proposed project seeks to co-design a digital application to support the lives and efforts of these informal caregivers. For such an application to successfully free up time, reduce burnout, improve care, and increase wellbeing it must originate from the needs and priorities of informal caregivers themselves. To accomplish this sort of ‘user centered design,’ the project will use a modified version of the collaborative Design Thinking Process (DTP) to map challenges and imagine feasible technology-enabled solutions. Our working assumptions going into the DTP are that cloud-based recruitment, scheduling, communication, knowledge bank, service navigation, and patient sensing elements have the potential to support the work of informal care networks. Over the course of a Citizen Panel session (step one in the DTP), a Delphi priority setting exercise (step two) and a Design Thinking co-development event (step three), these assumptions will be tested against the real-world experience of caregivers, the technical know-how of software engineers, and the implementation expertise of healthcare quality and safety specialists allowing us to prioritize certain elements for development, and to produce a prototype digital application that truly assists informal caregivers.

Project Leads
  • Myles Leslie, University of Calgary