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UBC Theses and Dissertations

Human-centered innovations for improving the experience of informal caregivers of people living with neurocognitive disorders Atoyebi, Oladele Ademola


Informal caregivers are an important part of the Canadian healthcare system. At any given time, about 28% of Canadians are caregivers and up to 50% will become at some point in their lifetime. As more people are being diagnosed with neurocognitive disorders (NCDs) such as dementia, there will be an increasing demand on and for informal caregivers. Caring for a person with a NCD is strenuous and carers experience a high level of burden compared to non-caregivers. Since the care, support, and companionship provided by caregivers are invaluable, there is a need to provide them relief, so they can continue to provide the much-needed assistance while having an appreciable quality of life. Research suggests that appropriate assistive technology reduces stress, and reduces caregiver demands. Technologies have greater impact and relevance if users are involved in the selection and design process of such solutions. A human-centered approach to design promotes the creation of solutions that are usable and acceptable to users. The overall goal of this research was to involve informal caregivers and people with NCDs to explore their needs, identify potential technological solutions, prioritize these and develop an initial prototype of a potential solution to meet their caregiving needs. To achieve this goal, five sequential studies were conducted including a mixed-methods study to determine the problematic care activities of informal caregivers of people with disabilities, a systematic review to identify the needs of informal caregivers, a meta-analysis to evaluate the efficacy of technology-based interventions for meeting the needs of carers, a survey to identify the most prioritized technological solutions, including services for informal caregivers and human-centered prototyping of the most prioritized technology. This study found that people with NCDs and their caregivers prefer to be involved directly in identifying their needs and the practical measures to address them satisfactorily. Participants pointed out their unmet needs and continued to be interested in the process to determine the best solutions to address them. Specifically, as participants wanted a more effective web-based service to assist them when they hire support workers, we worked with them to co-design a medium-fidelity prototype of this service.

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