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Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide?
  1. Deirdre Fetherstonhaugh1,
  2. Linda McAuliffe1,
  3. Michael Bauer1,
  4. Chris Shanley2
  1. 1Australian Centre for Evidence Based Aged Care, La Trobe University, Melbourne, Victoria, Australia
  2. 2Centre for Applied Nursing Research, Western Sydney University, Penrith South, New South Wales, Australia
  1. Correspondence to Dr Deirdre Fetherstonhaugh, College of Science, Health and Engineering, La Trobe University, Kingsbury Drive, Bundoora, VIC 3086, Australia; d.fetherstonhaugh{at}latrobe.edu.au

Abstract

Background For people living with dementia, the capacity to make important decisions about themselves diminishes as their condition advances. As a result, important decisions (affecting lifestyle, medical treatment and end of life) become the responsibility of someone else, as the surrogate decision-maker. This study investigated how surrogate decision-makers make important decisions on behalf of a person living with dementia.

Methods Semi-structured interviews were conducted with 34 family members who had formally or informally taken on the role of surrogate decision-maker. Thematic analysis of interviews was undertaken, which involved identifying, analysing and reporting themes arising from the data.

Results Analysis revealed three main themes associated with the process of surrogate decision-making in dementia: knowing the person's wishes; consulting with others and striking a balance. Most participants reported that there was not an advance care plan in place for the person living with dementia. Even when the prior wishes of the person with dementia were known, the process of decision-making was often fraught with complexity.

Discussion Surrogate decision-making on behalf of a person living with dementia is often a difficult process. Advance care planning can play an important role in supporting this process. Healthcare professionals can recognise the challenges that surrogate decision-makers face and support them through advance care planning in a way that suits their needs and circumstances.

  • Dementia
  • Living Wills/Advance Directives
  • Decision-making
  • End-of-life
  • Autonomy

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Footnotes

  • Contributors All authors have made substantial contributions to the conception and design of the study, or acquisition of data, or analysis or interpretation of data. DF conceived of and designed the study, contributed to the acquisition and analysis of data and drafted and revised the paper. LMc contributed to the acquisition, analysis and interpretation of data, and drafted and revised the paper. MB contributed to the analysis and interpretation of data and revised the manuscript critically for important intellectual content. CS also contributed to the analysis and interpretation of data and revised the manuscript critically for important intellectual content. All authors are in agreement with the content of the manuscript and have provided final approval of the version to be published. The content of the paper has not been published or submitted for publication elsewhere.

  • Funding This project was funded by the Dementia Collaborative Research Centre: Carers and Consumers as part of the Australian Government's Dementia Initiative. The views in this work are the views of its authors and not necessarily those of the Australian Government.

  • Competing interests None declared.

  • Ethics approval La Trobe University Human Ethics Committee (Application No. 13-046).

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

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