From bubbling to boiling over: a meta-ethnography of the process towards and during crisis from the perspectives of persons living with dementia, informal carers and healthcare professionals

Abstract

Background: Crisis admissions in dementia care are increasing, often leading to negative outcomes for people with dementia, their informal caregivers and healthcare professionals. Crises arise from a complex interplay of health, behavioural, social and environmental factors.

Objective: This systematic review of qualitative studies, using a meta-ethnographic approach, explores the process leading up to and unfolding during crises.

Methods: Five databases were searched for studies published between January 2000 and September 2023. Study selection involved AI-assisted screening (ASReview), followed by manual review and quality appraisal using the Joanna Briggs Institute checklist. Data synthesis was guided by the Strauss and Corbin qualitative framework.

Results: Nineteen studies, mainly reflecting the perspectives of informal caregivers and healthcare professionals, were included in the analysis. The core phenomenon identified is the mechanism in which professionals, persons with dementia and informal caregivers are constantly balancing between safety and autonomy, triggered by disruptions to a previously stable situation. Two contextual factors influence this process: a proactive, collaborative attitude among healthcare professionals, and a healthcare system that often acts as a push system, limiting flexibility and responsiveness.

Conclusions: These findings highlight the need for collaborative care approaches to prevent or manage crises more effectively, offering valuable insights for practice and policy improvements.

Keywords: crisis; dementia; emergency; healthcare professionals; informal caregivers; older people; qualitative research.