What is important to people with dementia living at home? : A set of core outcome items for evaluating non-pharmacological community-based health and social care interventions

Reilly, Siobhan and Harding, Andrew and Morbey, Hazel and Ahmed, Faraz and Williamson, Paula and Swarbrick, Caroline and Leroi, Iracema and Davies, Linda and Reeves, David and Holland, Fiona and Hann, Mark and Keady, John (2020) What is important to people with dementia living at home? : A set of core outcome items for evaluating non-pharmacological community-based health and social care interventions. Age and Ageing, 49 (4). pp. 664-671. ISSN 0002-0729

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Abstract

Objectives Inconsistency in outcome measurement in dementia care trials impedes comparisons of effectiveness between trials. The key aim of this study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people with dementia living at home. Method We used a mixed-methods research design, including substantive qualitative research with five key stakeholders groups. We consulted with people living with dementia for many aspects of this research. We applied a modified two-round 54 item Delphi approach to attain consensus on core outcomes. The COS was finalised in a face-to-face consensus meeting in 2018. Results Of the 288 who completed round 1 (21 people living with dementia, 58 care partners, 137 relevant health and social care professionals, 60 researchers, 12 policy makers) 246 completed round 2 (85% response rate). Twenty participants attended the consensus meeting. We reached consensus for the inclusion of 13 outcome items. Conclusion We identified 13 outcome items which are considered core; many relate to social health. Providing there are adequate measures, measuring these core outcome items will enhance comparisons for effectiveness making trial evidence more useful. The items will provide commissioners and service planners with information on what types of interventions that are most likely to be valued highly by people living with dementia.