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

= 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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Publication Details

Journal
Death Studies
Published
2026-05-28
DOI
https://doi.org/10.1080/07481187.2026.2676985
Primary Topic
Dementia and Cognitive Impairment Research
Type
article
Field-Weighted Citation Impact
0.00
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article

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

Lauren J. Breen, Claire V. Burley, Leah O’Connor, Julia Amidzic et al.
Death Studies
Dementia and Cognitive Impairment Research
article

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

Lauren J. Breen, Claire V. Burley, Leah O’Connor, Julia Amidzic, Molly Quartermaine, Hettie Moore, Christopher Sealey
article en

Abstract

= 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.

Death Studies
Curtin University (AU), The University of Notre Dame Australia (AU)
Gender equality
Openalex Percentile: Top 6%
Dementia and Cognitive Impairment Research
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