Transitional care needs of persons with dementia and their care partners: a secondary analysis using Transitions Theory

Persons with dementia (PWD) and their care partners experience multidimensional care transitions across the illness trajectory. Care transitions interventions often center the experience of transfer between healthcare settings and depend on specialized services, which limits incorporation into standard routine care. This study examined the transitional care needs of PWD and care partners using Transitions Theory to inform transitional care interventions, especially for hospice care transitions. This is a secondary qualitative directed content analysis. Data were coded using Transitions Theory concepts, analyzed using framework analysis, including data familiarization, framework identification, indexing, charting, and interpretation. Participants (n=20) with an average age 53 were mostly female children care partners (80%, n=16) of PWD identifying as Black, Hispanic/Latino, Asian, or White. Five themes were identified: (1) “They change and you taking the role now of the parent”: Multiplicity and complexity of transitions, identifying overlapping developmental, health-illness, situational, and organizational transitions; (2) Transitions occur in unanticipated ways, reflecting variable awareness and unpredictable illness trajectories; (3) Challenging transition conditions, including personal, community, and systemic factors; (4) Challenging decision making in transitions, highlighting care partners’ uncertainty and moral distress making ongoing decisions; and (5) Critical supports for healthy transitions, identifying guidance, care network, psychosocial well-being, and community resources as critical for transitions. Transitional care in dementia is characterized by multiplicity and unpredictability of transitions. When tailored transitional care guidance is lacking, care partners must take on significant responsibility for finding information and making decisions. Transitional care interventions that integrate anticipatory guidance, care planning facilitation, psychosocial support, and community linkage are critical to addressing these needs.