Abstract

Background/Objectives: Family caregiving for people living with dementia is central to ageing and long-term care, but it is not only a practical arrangement but also a relational and structurally shaped experience. Care may be grounded in affection, responsibility, and connection, while still becoming difficult to refuse, share, or limit. Although caregiver burden is well documented, less is known about how former caregivers retrospectively appraise the caregiving role after active care has ended. This study examined role captivity among former family caregivers, focusing on constrained choice, subjective role engulfment, perceived support, and caregiver wellbeing. Methods: A retrospective cross-sectional mixed-methods survey was conducted among 180 former family caregivers of people living with dementia in Northern Italy. Quantitative analyses examined associations between role-captivity-related indicators and retrospective caregiving outcomes. Open-ended responses were analysed using theory-informed qualitative content analysis. Results: Constrained choice at caregiving uptake was reported by 22.2% of participants, and 56.1% met the criterion for subjective role engulfment. Overall, 60.0% would provide family care again, while only 28.3% would be willing to receive family care themselves. One in five reported caregiving-related health problems. In multivariable models, constrained choice was associated with lower willingness to provide care again (OR = 0.27, p = 0.002) and less positive retrospective appraisal (OR = 0.35, p = 0.036). Subjective role engulfment was independently associated with less positive appraisal (OR = 0.36, p = 0.008), while perceived support was associated with positive appraisal (OR = 6.31, p < 0.001) and perceived processing (OR = 2.68, p = 0.013). Qualitative findings showed that caregiving was often remembered as meaningful and relationally important, yet difficult to refuse, progressively all-consuming, and shaped by structural and informational barriers. Conclusions: Retrospective appraisal of family dementia caregiving depends not only on care demands, but also on whether care was experienced as chosen, bounded, shared, and supported. Role captivity helps identify when relationally meaningful care becomes difficult to sustain and highlights the need for caregiver-sensitive dementia care that protects agency, role boundaries, and access to timely support.

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