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

INTRODUCTION: Approximately 450 000 people in the UK are living in care homes, 70% of whom are thought to have dementia or significant memory problems. This means that they may need support with day-to-day decisions about their health and care. Shared decision-making interventions can have a positive impact on patient outcomes. They recognise an individual's rights to make decisions about their care or treatment and support person-centred approaches to care delivery. METHODS: A systematic review of studies designed to assess, implement, measure and/or explore shared decision-making with cognitively impaired adults in (or transferrable to) an extended care setting, with a view to answering the research question: How can people living with dementia and cognitive impairment be included in day-to-day decisions about their health and care in extended care settings? The systematic review will be started in May 2016. Studies are excluded that focus on advance decision-making. The search strategy is limited to a 20-year timeframe and English language and includes electronic databases; CINAHL, PubMed, the Cochrane Library, NICE Evidence, OpenGrey, Autism Data, Google Scholar, Scopus and MedicinesComplete. ETHICS AND DISSEMINATION: Ethical approval not required. Planned dissemination routes for protocol and systematic review through conference presentations, peer-reviewed journals and research networks including the East of England CLAHRC, INTERDEM, and the National Care Homes Research and Development Forum. DISCUSSION: The review will explore how shared decision-making is characterised and constructed in extended care settings for people living with cognitive impairment and their staff and family carers, in relation to their preferences and desires, the roles people play, facilitators, barriers, risk and benefits. The findings will inform an intervention study facilitating shared decision-making for people living with dementia in care homes and have the potential to inform future policy and practice. TRIAL REGISTRATION NUMBER: CRD42016035919.