Navigating Anomie: A Grounded Theory Study of the Trajectory of Caregiving for Persons With Early-Stage Dementia

This grounded theory study aimed to understand the trajectory of the experience of family caregivers of a relative during the early stages of dementia over 2 years. Thirty family caregivers were purposively recruited; data were collected with face-to-face semi-structured interviews. Transcribed interviews were analysed with open, axial, and selective coding. The COREQ checklist was utilised for reporting. The core category that captured the trajectory of the caregiving process was ‘Navigating anomie: Finding light during the caregiving journey’. ‘Anomie’ encompassed a sense of alienation and anxiety surrounding symptoms and behaviours of their relative. The trajectory involved three phases, which employed unique strategies to help caregivers understand the dynamic nature of the progression of dementia. Phase 1, ‘chaotic orientation and sense making’, occurred as caregivers developed an ‘evolving awareness’ of that behaviours and symptoms of their relative were an indication of early stages dementia. Phase 2, ‘zigzag stabilisation and course setting’, involved strategies of ‘transitional steering’, which shifted caregiving from making sense of their relative's unpredictable behaviours to seeking guidance on treatment and establishing a care plan. Phase 3, ‘confident execution and reflection’, resulted from ‘course-correcting tactics’, which helped caregivers reassess perspectives on caregiving and their expectations about the long-term needs of their relative with dementia. Navigating anomie describes the trajectory of caregiving for a with early-stage dementia from the initial feelings of confusion to an understanding of the importance of their caregiving role. Mental health nurses should provide support interventions tailored to each phase of the trajectory, which could improve outcomes for caregivers.