The meaning of autonomy when living with dementia: A Q-method investigation.

Wolfe, Sarah E ORCID: 0000-0002-5182-0274, Greenhill, Beth ORCID: 0000-0003-4948-6796, Butchard, Sarah and Day, Jennie (2021) The meaning of autonomy when living with dementia: A Q-method investigation. Dementia (London, England), 20 (6). pp. 1875-1890.

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Official URL: http://dx.doi.org/10.1177/1471301220973067

Abstract

<h4>Background and aims</h4>Sensitivity to the rights of people with dementia is a key principle cited in the World Health Organisation's global action plan on dementia. Some critics question whether rights-based approaches embody loose and ill-defined ideas incapable of bringing about meaningful change. Exercising the right to autonomy is considered a core problem for people living with dementia. The tradition of individual sovereignty dominates ideas about autonomy, although the person as an individual is not a cross-culturally universal concept. This study explored the viewpoints of people with dementia and family carers regarding the meaning of autonomy with a view to informing rights-based practice.<h4>Methods</h4>Twenty participants, people living with dementia and family carers, each conducted a Q-sort of statements regarding the meaning of autonomy. A by-person factor analysis was used to identify patterns in how the range of statements about autonomy were ranked.<h4>Results</h4>Three factors emerged: retaining independence and self-expression, accepting dependence but being included and opportunity for connection. There was some agreement across these different views regarding the importance of being given time to think before making decisions and being kept active.<h4>Conclusions</h4>This study highlights the need for a person-centred approach to supporting people with dementia to claim their rights and the importance of adopting a stance of curiosity and critical thinking in rights-based training and professional practice. The findings suggest a variety of meaningful stories of autonomy and the possibility of further developing existing rights-based frameworks for dementia care.

Item Type:	Article
Uncontrolled Keywords:	Humans, Dementia, Decision Making, Caregivers
Divisions:	Faculty of Health and Life Sciences Faculty of Health and Life Sciences > Institute of Population Health
Depositing User:	Symplectic Admin
Date Deposited:	10 Nov 2021 09:02
Last Modified:	18 Jan 2023 21:25
DOI:	10.1177/1471301220973067
Open Access URL:	https://doi.org/10.1177%2F1471301220973067
Related URLs:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3142977