Agency in dementia care: systematic review and meta-ethnography

Abstract

Objectives: Dementia 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.Design: A 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 behavioural mechanisms underlying the process of decision making and looked at how the support of carers comes into play in making deliberate choices. Results:The 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 decisionmaking, and pseudo decision-making. Findings highlight those inter-relational processes that promote or negatively impact on the agency of people with dementia. Conclusions:Our 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.Words 246/250

Well-being in dementia and mild cognitive impairment

“…Supported decision making when applied to dementia means that individual with dementia remains the ultimate decision maker but supporters trusted by the person (family, friends, caregivers) help the individual understand the problems and options, and the supporters help communicate the will and preferences of the individual to others. The findings on agency in dementia reported by Bosco et al further underscore the need for further research on supported decision making in people with dementia (Bosco et al, 2019).…”

“…It is worth noting that these four papers are products of research efforts from several different countries: the USA (Miller et al, 2019), the UK (Bosco et al, 2019), Belgium (Dewitte et al, 2019), Chile and Portugal (Farhang et al, 2019). This demonstrates that well-being in dementia is a component of the global zeitgeist of dementia care.…”

“…A systematic review and meta-ethnographic analysis from the UK (Bosco et al, 2019) explored the experience of agency in individuals with dementia. Based on a review of 20 selected studies, authors identified three third-order constructs relating to decision-making pathways and degree of autonomy: autonomous decision-making, shared decisionmaking, pseudo-autonomous decision-making.…”

The compound role of a coordinator for home-dwelling persons with dementia and their informal caregivers: A qualitative feasibility study of the LIVE@Home.Path trial

“…Still, to safeguard the human rights [14] of persons with dementia to take active part in decision-making processes, these processes needs to be adapted for this to take place. In a meta-ethnography on agency in dementia, Bosco et al [28] reveals how acknowledging the persons as active agents and helping them maintain positive views of their abilities are important first steps to help them maintain autonomy. Further, they describe how persons with dementia can be supported in building strategies for making decisions on their own, such as by breaking decisions down to smaller units or using simple aids, such as a diary.…”

Two Different Primary Care Approaches for Caring for People With Dementia and Their Families

“…This confirmed previous findings on the criticality of educating and supporting carers to facilitate loved ones' ability to age in place, preferably at home. 19 NZ providers also were monitoring or connected to the "rest home," suggesting a level of comfort across the care continuum not evident among the US participants. Bundled payments, accountable care organizations, and a global budget model would benefit from NPs who can deploy this unique skill set.…”