Co-developing a learning health community for caregivers supporting older adults with dementia: preliminary findings.
C. Lai, M.C. Williams, S. Siriratne, A. Bye, M. Sakamoto, K Kasdorf.
Gerontechnology 25(s)
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AbstractPURPOSE: In Canada, and around the world, health systems are facing capacity pressures and an aging population. An estimated 85,800 people live with dementia in the province of BC. [1] This number is expected to increase to 247,300 by 2050. [1] The adoption of electronic health records (EHRs) offers potential for systems level data to drive improvements. Innovations within Learning Health Systems (LHS) are viewed as opportunities to achieve the goals of improving patient outcomes and experiences, optimizing use of knowledge and evidence for decision making, reducing health system costs, and increasing equitable access to health services. [2] Yet, how LHS are to improve care delivery has yet to be established. With health care organizations (including primary care providers, laboratory facilities) offering access to EHRs and virtual services (such as hospital at home, virtual care), digital health literacy skills are becoming more relevant for accessing services, as well as supporting transitions in care between providers and settings (e.g., hospital to home). However, it is not clear to what extent caregivers have the necessary information and skills to understand and use these technologies. Furthermore, there is an increasing number of smart devices and home technologies available for aging at home, but how caregivers are to use technologies to support older adults living with dementia has yet to be determined. Our project seeks to co-develop a dementia learning health community (LHC) for caregivers supporting older adults living with dementia. We define a LHC as a community of learners who use tools to collect data and information for generating community knowledge in continuous learning cycles. METHOD: We adopt a community-based participatory approach using qualitative methods to co-create a dementia learning health community. Guided by a community advisory group consisting of 5 community partners, we recruited 6 caregivers to participate in one-on-one interviews to share caregiving experiences and what they would like to learn within a learning community. RESULTS AND DISCUSSION: We present our approach to co-develop a LHC and preliminary findings that reflect challenges facing caregivers of older adults living with dementia in North Vancouver Island. Our findings will inform the development of a pilot dementia learning health community.Keywords: Participatory research approach, co-designing tools, learning health communities, caregivers, rural and remote
C. Lai, M.C. Williams, S. Siriratne, A. Bye, M. Sakamoto, K Kasdorf.
Gerontechnology 25(s) (2026). Co-developing a learning health community for caregivers supporting older adults with dementia: preliminary findings.. Gerontechnology, 25(2), 1-10
https://doi.org/10.4017/gt.2026.25.2.1609.3