The real-time experiences of older people with dementia, informal caregivers and professional caregivers during the transition from home to a nursing home: multiple longitudinal cases

Background: Retrospective research found that the transition from home to a nursing home is a complex and often fragmented care process that can lead to negative outcomes for the entire care triad: older people with dementia, informal caregivers and professional caregivers. Currently, comprehensive and real-time research throughout the entire transitional care process is missing from the literature. This study aims to follow the experiences of the care triad during the transition from home to a nursing home in real-time. Methods: The study was a real-time, multiple-case study that used patient journey mapping methodology. The participants were recruited in the province of Limburg, the Netherlands. Participants were recruited at partner healthcare organizations of the Living Lab in Ageing and Long-Term Care in the Netherlands. Five care triads, consisting of older people with dementia awaiting nursing home placement, their informal caregivers, and the professional caregivers involved in the transition process, were included in the study. A total of 26 participants were interviewed. The data was collected between October 2021 and March 2023 using; 1) semi-structured interviews; 2) follow-up moments; and 3) detailed logbooks. Data analysis consisted of individual and cross-case analysis. Results: The care triads experienced an overall sense of uncontrollability throughout the care process. This sense of uncontrollability was related to three factors. Firstly, the dependency within the care triad was characterized by each participant feeling reliant on others within their respective triad. Secondly, there was a reactive rather than proactive transition decision. Participants struggled to identify the right transition time. This was related to uncertainty surrounding the timing of the move, societal taboos, and government policy. Thirdly, there was a discontinued transition process. There were different professional caregivers responsible for a specific part of the transition. Additionally, the dementia case manager was absent after the move. Conclusion: Policymakers and professional caregivers should collaborate to establish a gradual transition process. Professional caregivers should offer a guiding role guaranteeing continuity of care after the move. Future research should evaluate how to empower care triads throughout the transition from home to a nursing home.