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Published on: September 30, 2020
Caregivers' decision-making for health service utilisation across the Alzheimer's disease trajectory
Kristina M Kokorelias1, Monique A M Gignac2, Gary Naglie3,4
1Rehabilitation Sciences Institute, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
Abstract:
Health and social care services can enhance the community experiences of people with Alzheimer's disease and their caregivers but making decisions about service use is complex. Using a grounded theory methodology, we explored service use decision-making in 40 spousal and adult children caregivers for people with Alzheimer's disease across the caregiving and disease trajectory. Participants' perception of their initial service interactions influenced their decision-making process and use of services. Difficulties navigating the healthcare system and finding available services also influenced decision-making. Caregivers make decisions to sustain care in the community that change throughout the caregiving and disease trajectory. Two key factors influence service use (a) the goals of caregiving and (b) the practicalities of accessing services. Both factors change across caregiving phases. By expanding our understanding of how caregivers make service use decisions, we can augment future practice to help caregivers access services that can better support them across the disease trajectory.
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