Shared decision-making for people living with dementia in extended care settings: a systematic review

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