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Shared decision-making for people living with dementia in extended care settings: a systematic review
  1. Rachel Louise Daly,
  2. Frances Bunn,
  3. Claire Goodman
  1. Centre for Research in Primary and Community Care (CRIPACC), University of Hertfordshire, Hatfield, UK
  1. Correspondence to Mrs Rachel Louise Daly; r.daly2{at}


Background Shared decision-making is recognised as an important element of person-centred dementia care.

Objectives The aim of this review was to explore how people living with dementia and cognitive impairment can be included in day-to-day decisions about their health and care in extended care settings.

Design A systematic review including primary research relating to shared decision-making, with cognitively impaired adults in (or transferrable to) extended care settings. Databases searched were: CINAHL, PubMed, the Cochrane Library, NICE Evidence, OpenGrey, Autism Data, Google Scholar, Scopus and Medicines Complete (June to October 2016 and updated 2018) for studies published in the last 20 years.

Results Of the 19 included studies 15 involved people with living dementia, seven in extended care settings. People living with cognitive impairment often have the desire and ability to participate in decision-making about their everyday care, although this is regularly underestimated by their staff and family care partners. Shared decision-making has the potential to improve quality of life for both the person living with dementia and those who support them. How resources to support shared decision-making are implemented in extended care settings is less well understood.

Conclusions Evidence suggests that people living with cognitive impairment value opportunities to be involved in everyday decision-making about their care. How these opportunities are created, understood, supported and sustained in extended care settings remains to be determined.

Trial registration number CRD42016035919

  • Cognitive Impairment
  • Dementia
  • Shared Decision-Making
  • Care Homes
  • Everyday Care
  • Extended Care
  • Day-to-Day Care
  • Residential Care

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See:

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  • Contributors RD wrote the protocol, undertook data extraction, quality assessment and analysis, and wrote the paper. FB and CG supervised and critically appraised all aspects of the process. Important changes from the protocol have been explained. All authors read and approved the final manuscript.

  • Funding This review is undertaken as part of a wider doctoral study focusing on dementia care in care homes which has been funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East of England. This report presents independent research funded by the NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East of England, at Cambridgeshire and Peterborough NHS Foundation Trust.

  • Disclaimer The views expressed are those of the author and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

  • Competing interests None declared.

  • Patient consent Not required.

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

  • Data sharing statement No additional data are available.

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