Knowledge exchange throughout the dementia care journey by Canadian rural community-based health care practitioners, persons with dementia, and their care partners: an interpretive descriptive study

Introduction: Accessing, assessing, exchanging, and applying dementia care information can be challenging in rural communities for healthcare practitioners (HCPs), persons with dementia (PWD), and their care partners. The overall purpose of this research was to enable HCPs, care partners, and PWD to use dementia care information more effectively by examining their information needs, how these change over time, and how they access, assess, and apply the knowledge. Methods: A qualitative interpretive descriptive approach was used. A convenience sample was initially recruited through study collaborators in Southwestern Ontario, followed by purposive sampling. Nine rural dementia care networks consisting of PWD (n=5), care partners (n=14), and HCPs (n=14) were recruited and 80 interviews were conducted at three time points. Transcripts were coded using Lubrosky's thematic analysis. Results: Six stages of the dementia care journey were identified: (1) recognizing the symptoms; (2) receiving a diagnosis; (3) loss of independence; (4) initiating and using home care and respite services; (5) long-term care (LTC) placement; and (6) decisions related to end-of-life care. Rural care partners identified the need for different types of knowledge during each of these critical decision points of the dementia care journey. They accessed information from family members, friends, local organizations, and dementia internet sites. Persons with dementia tended not to identify the need for dementia care information. The HCPs accessed dementia care information from their own organization, other organizations, and internet sites. Care partners and HCPs assessed the trustworthiness of the information based on whether the source was a well-known agency or their own organization. Barriers to knowledge exchange included: lack of rural community-based services for dementia care; care partners reluctant to seek help and had limited energy; and lack of integration of dementia-related services and supports. Facilitators of knowledge exchange included: rural care partners with healthcare experience who were actively seeking information; development of trusting relationships between HCPs, care partners, and PWD; and formal mechanisms for exchanging information within and across rural community-based organizations. Conclusion: This research illustrates the stages of the dementia care journey, and the types of information typically needed, accessed, assessed, and applied at each stage. Healthcare practitioners can use these findings to support rural care partners in navigating their dementia care journey. Support is needed as care partners often do not have the time, energy, skills, or knowledge to seek out dementia care information independently. In addition, PWD typically do not recognize the need for this knowledge, leaving care partners potentially isolated in this journey. Developing formal linkages within and across rural organizations will facilitate knowledge exchange and the delivery of cost-effective, quality dementia care. However, additional rural community-based resources are urgently needed to implement these recommendations. This may require a redistribution of resources from acute care to rural community care.