Subjective carer burden and pre-death grief experiences of informal carers of people living with dementia: A systematic review and narrative synthesis

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Abstract
Informal dementia care is all-encompassing, yet carers' psychosocial needs are frequently overlooked. We conducted a systematic review to synthesize evidence examining subjective carer burden and pre-death grief of adult informal family carers of people living with dementia. A pre-registered review (PROSPERO registration: CRD420251052503) was conducted in accordance with PRISMA guidelines. Four databases (MEDLINE, CINAHL, PubMed, and PsycINFO) were searched in June 2025 to identify peer-reviewed studies reporting original data, yielding 5,084 records. Thirty-five studies met inclusion criteria (N = 2210 carers, 69% female). Methodological quality was assessed and findings were synthesized into 7 themes: Relational Reconfiguration, Living with Uncertainty and Loss, Absorption and Enmeshment, Emotional Distress, Managing Behavioral Challenges, Coping and Identity Preservation, and Transition to Formal Care. Evidence is limited by exploratory studies and an over-reliance on Western samples. Findings suggest a need for psychosocial interventions that reflect the complexity of the caring journey.

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