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

Workpackage Leads
  • Janet Fast, University of Alberta
  • Louise Demers, University of Montreal


Core Research Projects

Designing Assistive Technology that Cares – DATcares

Project Leads
  • Jennifer Boger, University of Waterloo
Researchers
  • Bill Miller, University of British Columbia
  • Helene Pigot, University of Sherbrooke
  • Janet Fast, University of Alberta
  • Louise Demers, University of Montreal

 

Innovative Technology for Caregivers – 2.1 INToCARE

Informal caregivers provide 75% of the assistance needed for individuals with disabilities to remain in their communities. This project is surveying caregivers to better understand their needs and challenges. It is reaching out to them as active partners in the development of technologies that could alleviate their burdens.

To learn more about this project, please click here

Project Leads
  • Ben Mortenson, University of British Columbia
  • Francois Routhier, Laval University
Researchers
  • Claudine Auger, University of Montreal
  • Janet Fast, University of Alberta
  • Louise Demers, University of Montreal
  • Paula Rushton, University of Montreal

 

Portal for the Systematic Monitoring and Training of User-Caregiver Dyads after Provision of Assistive Devices – 2.2 MovIT-PLUS

In Canada, 1.1 million older adults use assistive technology to compensate for physical or cognitive limitations. Many of them also count on informal caregivers, but there is little support to assist the caregivers in the use of these technologies. This project aims to fill the gap, initially through the development of a web portal for caregivers to allow them to access ongoing training in the uses of mobility assistive devices such as canes, walkers, wheelchairs or scooters. The portal will also include other technologies developed by AGE-WELL.

Click here to learn more about this project.

Project Leads
  • Sara Ahmed, McGill University
  • Claudine Auger, University of Montreal
Researchers
  • Bill Miller, University of British Columbia
  • Jeff Jutai, University of Ottawa
  • Louise Demers, University of Montreal
  • Manon Guay, University of Sherbrooke
  • Nathalie Bier, University of Montreal

 

Online Assistive Technology Rating and Recommending System for Caregivers – 2.3 CARE-RATE

There are many products that can help support an older adult with dementia to live in the community. But it is often up to family caregivers to find these products—a challenging process that can be difficult, frustrating and often futile. This project is applying a new type of artificial intelligence called “cognitive computing” to create an online tool that connects family caregivers to products they need to support themselves and the older adult with dementia. While it will be widely available via the Internet, it will be far more specific and powerful than conventional search engines, allowing lay people to describe in plain language what they need and the problem they want to solve.

For more information on this project, click here.

Project Leads
  • Jennifer Boger, University of Waterloo
  • Frank Rudzicz, Toronto Rehab Institute/University of Toronto
Researchers
  • Alex Mihailidis, Toronto Rehab Institute, University Health Network
  • Jan Polgar, University of Western Ontario

 

Assistive Technologies that Care for the Caregiver – 2.4 ATforCC

Assistive technologies (AT) are assumed to lighten the burden of family caregivers. But there has been little study of the direct impact; most research centres on the care recipients. This project focuses directly on the caregivers themselves to study their needs and how AT affects their lives. Understanding eldercare providers’ unique needs and preferences is critical for the successful development and adoption of AT.

Learn more about this project here.

Project Leads
  • Janet Fast, University of Alberta
  • Norah Keating, University of Alberta
Researchers
  • Ben Mortenson, University of British Columbia
  • Eleni Stroulia, University of Alberta
  • Lili Liu, University of Alberta
  • Megan Strickfaden, University of Alberta
  • Myles Leslie, University of Calgary

 

Understanding how to Appropriately Support Indigenous Families with Dementia through Digital Storytelling: A Community-based Approach – 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
Researchers
  • Hoi Cheu, Laurentian University
  • Sheila Cote-Meek, Laurentian University
  • Taima Moeke-Pickering, Laurentian University

 

Developing User-Centred Digital Supports for Informal Networks that Provide Care for Elders: A Co-Design Approach – 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
Researchers
  • Francois-Pierre Gauvin,

 

Illustrating Designed Things as Therapy – 2.10-SIP A1

The median population age for many European countries, China and North America is increasing, which shifts financial, emotional and infrastructure burdens of care to an increasingly smaller proportion of caregivers. Governments, care organizations, and affected family members are seeking new ways of optimizing the lives of older persons within limited resources. Transitions experienced as people grow older (e.g., spousal loss, moving, health incidents) are challenging, yet designed things can offer support. This project's goal is to mobilize knowledge about explicit design interventions that can improve and/or change little things that make a difference in how well older persons adjust and cope with new (and sometimes old) circumstances. Our objective is to highlight everyday situations within near and built environments that offer combinations of care, emotional well-being, safety, and recipient acceptability, while presenting possible solutions. We will co-create five short illustrated films emerging from fifteen years of ethnographic research into how older persons and those with disabilities interact within built environments. The films will be intergenerational co-creations with caregivers, older persons, research students, and student illustrators. They will be shown and vetted within care communities in ethnically diverse locations for refining and improving upon them through an iterative and collaborative process. Highly qualified personnel will be mentored and will develop their own research interests within the project. We understand that older persons are neither homogeneous in culture, ethnicity, religion, nor in the degree to which they need care, physical, and emotional support. Therefore, these films address cultural needs and differences while creating an awareness of the relationships between older persons and designed things including assistive technologies. The films will be made available in several languages to caregivers, schools, governments and the general public in Canada and elsewhere as educational materials and points of discussion into aging well.

Project Leads
  • Megan Strickfaden, University of Alberta

 

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