Understanding care transitions from the perspectives of persons with dementia and their caregivers: A grounded theory

Abstract

Introduction: The proportion of the Canadian population living with dementia is rising. Since persons with dementia are intensive health care service users, they have many contact points with various health care providers and settings. Consequently, they may be required to navigate through an often-fragmented care system. Transitional care, which involves the coordination and continuity of care for patients moving within or between care settings, has the potential to improve transitions for persons with dementia and their caregivers. Despite being recognized as a policy and research priority, transitional care for persons with dementia and their caregivers is poorly understood.

Objective: This study aimed to fill gaps in the understanding of care transitions from the perspectives of individuals with dementia and their informal caregivers through the development of a theoretical framework outlining factors that contribute to the processes care transitions in this population. Research questions addressed what was important to persons with dementia and their caregivers as they moved throughout the health care system as well as the challenges that they faced during health care system transitions.

Methods: Constructivist grounded theory methods were used to build an understanding of the care transitions of persons with dementia and their caregivers. Individual or dyad interviews were conducted, recorded, and transcribed verbatim. Through initial and focused coding, themes and relationships between themes emerged and framework development began. Data collection and analysis occurred iteratively until saturation was reached.

Results and Discussion: A three-part theoretical framework outlining the context, processes and influencing factors of care transitions emerged from the data. Elements of context included the existence of multiple realities and goals among those involved in transitions, the broader community, and the parallel experiences of others navigating the system. Phases of transition processes experienced during the dementia journey were a transition into the dementia care system, a continuous process of management and follow-up, and the adjustment to a new home. Four categories of influencing factors were described by participants: catalysts (causes of transitions), buffers (intermediary actions to ease future transitions), facilitators (factors that help transitions), and obstacles (factors that hinder transitions). This study suggests that transitions are complex; there is no single, simple remedy for the challenges of transitions. However, gaining an in depth understanding of the care transitions of individuals with dementia is an important step in improving transitions for this population.

Knowledge translation and significance: The results of the study may be useful in the creation of recommendations for improving the care transition experiences of individuals with dementia and their caregivers. Furthermore, the consultations contributed to dementia strategy development in Ontario. Transitional periods represent a time of risk for adverse events and a high level of caregiver stress; therefore, this study has the potential to improve the quality of care and quality of life of persons with dementia and their informal caregivers.