Agency in dementia care: systematic review and meta-ethnography

• Published in: International psychogeriatrics Vol. 31; no. 5; pp. 627 - 642
• Main Authors: Bosco, Alessandro, Schneider, Justine, Coleston-Shields, Donna Maria, Jawahar, Kaanthan, Higgs, Paul, Orrell, Martin
• Format: Journal Article
• Language: English
• Published: Cambridge, UK Cambridge University Press 01.05.2019; Elsevier Inc
• Subjects: agency; Autonomy; Caregivers; Caregivers - legislation & jurisprudence; Caregivers - psychology; Cognition & reasoning; Cognitive models; Data analysis; Decision Making; Dementia; Dementia - therapy; Ethnography; Everyday life; Families & family life; Family Relations; Health services; Humans; Influence; Medical personnel; Medical Subject Headings-MeSH; Mental Competency - legislation & jurisprudence; Mental Competency - psychology; Metacognition; Patient Care Planning; Personal Autonomy; Power; Qualitative research; Search strategies; Social change; Social services; Social structure; Systematic review; Terminal Care; United Kingdom > UK; autonomy; dementia; agency; decision-making; metacognition
• ISSN: 1041-6102; 1741-203X; 1741-203X
• DOI: 10.1017/S1041610218001801

ABSTRACTObjectivesDementia often limits the agency of the person to such an extent that there is need for external support in making daily life decisions. This support is usually provided by family members who are sometimes legally empowered to engage in decision-making on behalf of the person for whom they care. However, such family carers receive little or no information on how to best provide support when there is a lack of capacity. This may have an impact on the agency of the person with dementia. This review explores the experience of agency in people living with dementia. DesignA systematic search was conducted on IBSS, MedLine, PsychINFO, EMBASE, and CINAHL. Two independent researchers screened the studies and conducted the quality appraisal. We used meta-ethnography for data analysis. As part of the synthesis, we identified behavioral mechanisms underlying the process of decision-making and looked at how the support of carers comes into play in making deliberate choices. ResultsThe meta-ethnography involved 20 studies. Three levels of third-order constructs were identified, each describing a decision-making pathway and reflecting the degree of autonomy of the person with dementia: autonomous decision-making, shared decision-making, and pseudo decision-making. Findings highlight those inter-relational processes that promote or negatively impact on the agency of people with dementia. ConclusionsOur review will provide health and social care personnel with an understanding of the role of the carer in the decision-making process, and therefore which mechanisms need to be promoted or discouraged through training.