Transitional care for persons with dementia and their caregivers

Introduction: Persons with dementia (PWD) experience many points of contact with health and community services, and must navigate through a health care system that has been criticized for poor integration. Although transitional care (the coordination of care as patients transfer between levels or locations of health care [1]) and health system navigation for PWD have been identified as policy and research priorities, there is a lack of research surrounding transitional care experiences of PWD. The primary objective of this study was to identify important aspects of transitional care from the perspectives of PWD and their caregivers. Secondary research questions addressed whether a) there is a perceived impact of dementia on care transitions in this population and b) important aspects of transitional care identified in existing transitional care models extend to PWD and their caregivers. Methods: The study employed a constructivist grounded theory approach. The semi-structured interview guide included general questions on care transitions, and specific questions informed by existing transitional care models. Interviews were conducted with PWD, caregivers or dyads in two regions of Ontario. Data analysis, which involved familiarization followed by initial and focused coding, was conducted alongside data collection in an iterative manner until theoretical saturation was reached. Member checks were conducted to ensure that the results remained true to participant views. Results and discussion: The domains of transitional care that were important to PWD and their caregivers included: PWD and caregiver proactivity, PWD and caregiver health care system knowledge, provider consistency, individualized care, support for caregiver needs, and social support. Participants valued similar aspects of transitional care as those identified in existing transitional care models, but there was a clear perceived influence of dementia on care transitions due to a heavy reliance on informal caregivers and an apparent lack of understanding of dementia in the health care system. The unique challenges associated with navigating the system with dementia shaped the way that the participants experienced common transitional care elements. Conclusions and lessons learned: Dementia is one of the most significant challenges facing the health care system, and a coordinated and integrated health system response is needed. The results of this study indicate a need for dementia-specific transitional care strategies. 15th International Conference on Integrated Care, Edinburgh, UK, March 25-27, 2015 1 International Journal of Integrated Care – Volume 15, 27 May – URN:NBN:NL:UI:10-1-117085– http://www.ijic.org/ Understanding transitional care from the perspective of PWD and their caregivers may inform better transitional care practice and policy, thus improving their quality of care and quality of life. Limitations: The study was conducted in locations within Ontario, Canada. Since the supports available for PWD moving through the health care system often differ by location, it is possible that the results may not be generalizable outside of the province. Suggestions for future research: We plan to conduct consultations with Alzheimer Society representatives and other stakeholders from across Canada to assess the generalizability of the results and to suggest strategies for improving the transition experiences of persons with dementia and their caregivers. The acceptability and effectiveness of these strategies can be investigated in future research.

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