Recognising the agency of people with dementia

Abstract

People with dementia have been assumed to possess weak or even no agency, so this paper provides a novel contribution to academic debate by examining their actual potential for agency. The author draws on findings from a qualitative study of everyday decision-making by people with dementia that aimed to identify the role of social factors (such as gender) in influencing their involvement in decisions. Whilst decision-making constitutes a form of deliberative agency, the research also identified when agency was alternatively habituated, embodied or emotional. The Economic and Social Research Council-funded research was undertaken in the North of England. Existing theoretical perspectives on agency are critiqued, particularly in relation to rationality, language and individualised agency. The study highlighted that people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency. A more expansive concept of agency is needed in social science theory that is informed by the experiences of cognitively disabled people.

The enduring self: personhood, autonomy and compassion in the context of community-based dementia daycare centers

“…This is consistent with the literature that reports that PwD maintain a significant level of social agency [45]. The study by Boyle [46] highlights that "people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency," which is part of the sociologic construct of personhood. The staffs' self-reported actions are compassionate and consistent with their beliefs.…”

Citizenship as Distributed Achievement: Shaping New Conditions for an Everyday Life with Dementia

“…Throughout the analysis of the emergence and development of the care-collectives, we explored the links between care-relations, citizenship and knowledge, paying attention to what the care-collectives accomplished. Whilst most citizenship studies conceive of agency and citizenship as individual capacities (Boyle, 2014;Kontos, 2003), we have demonstrated that agency and citizenship might instead be understood as collective achievements demanding continuous enactment and re-enactment. We found that care-collectives are socio-material networks of relations that might facilitate the achievement of agency and citizenship.…”

“…Bartlett and O'Connor emphasize growth, social position, purpose, participation, community, and freedom from discrimination. Others recognize agency as embodied consciousness (Kontos, 2003), or as alternatively habituated, embodied, or emotional (Boyle, 2014). Yet another body of literature shows that the practice of citizenship is situational, depending on other people (Österholm & Hydén, 2014), places, and materialities (Pols, 2016).…”

Praktisering av medborgerskap

“…«Agency» handler om evnen til å uttrykke seg, enten gjennom verbale uttrykk eller kroppsspråk, og knyttes ofte til egenskaper ved individet. For personer med demens kan «agency» vaere kroppslig og habituelt forankret (Boyle, 2013(Boyle, , 2014Kontos, Grigorovich, Kontos og Miller, 2016). Anerkjennelse (recognition) handler om at mennesker har en iboende verdi som må respekteres for at medborgerskap skal bli realisert.…”