Abstract
BackgroundThe key aim of the study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people living at home with dementia.Methods/designDrawing on the guidance and approaches of the Core Outcome Measures in Effectiveness Trials (COMET), this study uses a four-phase mixed-methods design:Focus groups and interviews with key stakeholder groups (people living with dementia, care partners, relevant health and social care professionals, researchers and policymakers) and a review of the literature will be undertaken to build a long list of outcomes.Two rounds of Delphi surveys will be used with key stakeholder groups. Statements for the Delphi surveys and participation processes will be developed and informed through substantial member involvement with people living with dementia and care partners. A consensus meeting will be convened with key participant groups to discuss the key findings and finalise the COS.A systematic literature review will be undertaken to assess the properties of tools and instruments to assess components of the COS. Measurement properties, validity and reliability will be assessed using the Consensus-based Standards for the Selection of Health Measurement (COSMIN) and COMET guidance.A stated preference survey will elicit the preferences of key stakeholders for the outcomes identified as important to measure in the COS.DiscussionTo the best of our knowledge, this study is the first to use a modified Delphi process to involve people living with dementia as a participant group. Though the study is confined to collecting data in the United Kingdom, use of the COS by researchers will enhance the comparability of studies evaluating non-pharmacological and community-based interventions.Trial registrationThe study is registered on the COMET initiative, registered in 2014 at comet-initiative.org.
Highlights
The key aim of the study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people living at home with dementia
Being in a familiar neighbourhood and family surroundings can help people living with dementia cope better with their everyday lives and the majority of people living with dementia want to stay in their own home [1, 2]
Minister’s Challenge on dementia, a commitment of funding for social science research, and explores the meanings, experiences and composition of neighbourhoods for people living with dementia, their care partners and families, and other groups and individuals with whom they have contact [24]
Summary
The key aim of the study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people living at home with dementia. One-third of people living with dementia live alone and are reliant on support from family members, community services or home care agencies [1, 3]. In the UK, and in recent years, the range of nonpharmacological support available to people living with dementia to retain independence in their own homes and neighbourhoods has increased [3, 4]. A limited consensus has been reached about what outcomes should be measured in dementia services and studies. The association recommended that outcomes could include: the effect of interventions on people living with dementia’s cognition, behavioural and psychological symptoms; quality of life; global assessments and activities of daily living. It was recommended that outcomes could encompass the effects on care partners [6]
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