The influence of caregivers’ lived experiences in decision-making processes on care transitions in young-onset dementia

BackgroundCaregivers of people with young-onset dementia (YOD) hold diverse perspectives on the caregiving trajectory, reflecting the heterogeneity of underlying etiologies and the life stages of these people, who are often in the midst of employment, child-rearing, and other social responsibilities. Post-diagnostic care and services are often suboptimal and caregivers tend to be hesitant to initiate formal care and support services. We refer to movements of persons between different levels of care or physical locations as care transitions.ObjectiveTo improve caregiver support, this study aimed to provide insights into caregivers' perspectives on the decision-making process regarding care transitions and associated barriers and facilitators.MethodsSeventeen interviews with six caregivers of people with YOD were analyzed. Inductive content analysis was used to generate codes, followed by constant comparative analysis to create categories and themes describing caregivers' experiences.ResultsBarriers and facilitators influencing the decision-making process related to the initiation of care transitions were identified at two themes: individual and contextual level. Six categories and 23 sub-categories emerged. Individual-level categories included the character traits of the caregiver, the caregiver's need for support, impacts on the quality of the caregiver's relationship, and the burden experienced by the caregiver. Contextual-level categories included the social environment and the caregivers' experiences with healthcare professionals.ConclusionsCaregivers' decision-making regarding care transitions is shaped by thinking processes, character traits and contextual aspects. Healthcare professionals should strengthen collaboration and communication with caregivers. Acknowledging grief and supporting caregivers'sense of control are essential to providing adequate support.