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Original research
Broadening and deepening the understanding of agency in dementia
  1. Millie van der Byl Williams1,2,
  2. Hannah Zeilig1
  1. 1 London College of Fashion, University of the Arts London, London, UK
  2. 2 Dementia Research Centre, University College London, London, UK
  1. Correspondence to Millie van der Byl Williams, University of the Arts London London College of Fashion, London W1G 0BJ, UK; m.vanderbylwilliams0720181{at}arts.ac.uk

Abstract

Agency has become an essential component of discussions concerning selfhood, well-being, and care in dementia studies but the concept itself is rarely clearly defined and the use of this term can be confusing and conflicting. This paper outlines some of the key ways in which agency has been conceptualised in relation to dementia, highlighting the complexities surrounding this concept and focusing on agency in a way that is tied to our ideas about citizenship, legal and human rights. Seven key dimensions of agency are examined: embodiment, emotions, sense of agency, intentional conscious action, the social context of agency, decision-making and moral responsibility. Using a critical realist approach, this paper brings together the diverse ways in which agency has been understood into an interdisciplinary, laminated understanding of agency. This model is then used in an applied example demonstrating that this model can be used to identify the ways in which an arts intervention can support the agency of people living with dementia. This paper proposes that agency is layered, multidimensional and exists on a continuum.

  • dementia
  • Medical humanities
  • Philosophy
  • Care of the elderly

Data availability statement

No data are available.

https://doi.org/10.1136/medhum-2022-012387

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    Data availability statement

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    Footnotes

    • Twitter @millievdbw

    • Contributors MvdBW is the guarantor, wrote the manuscript, conducted the Participant Patient Invovlement and conceptualised the research. HZ made substantive contributions to this paper through editing multiple drafts and has guided the theoretical development of this work through her role as supervisor for MvdBW's PhD.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

    • Provenance and peer review Not commissioned; externally peer reviewed.