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

Objectives: inconsistency in outcome measurement in dementia care trials impedes the 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 nonpharmacological 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 adequatemeasures, 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 are most likely to be valued highly by people living with dementia.


Siobhan T. Reilly1,Andrew J. E. Harding1,Hazel Morbey1, Faraz Ahmed1, Paula R.Williamson2,3,
Caroline Swarbrick1, Iracema Leroi4, Linda Davies5,David Reeves6, Fiona Holland6,Mark Hann6,
John Keady7,8

1Faculty of Health and Medicine, Division of Health Research, Lancaster University, Lancaster,UK
2Clinical Trials Research Centre,University of Liverpool, Liverpool,UK
3Medical Research Council NorthWest Hub for Trials Methodology Research, Liverpool,UK
4School of Medicine, Trinity College Dublin,Dublin, Ireland
5Division of Population Health, Health Services Research and Primary Care, School of Health Sciences, University of Manchester,
6NIHR School for Primary Care Research, School of Health Sciences, University of Manchester,Manchester,UK
7Division of Nursing, Midwifery and SocialWork,University of Manchester,Manchester,UK
8Greater Manchester Mental Health NHS Foundation Trust, Manchester,UK


Journal: Age and Ageing
Pages: 1 - 8
Year: 2020
DOI: doi: 10.1093/ageing/afaa015

Further Study Information

Current Stage: Completed
Funding source(s): ESRC and NIHR

Health Area

Disease Category: Neurology

Disease Name: Dementia

Target Population

Age Range: 50 - 120

Sex: Either

Nature of Intervention:

Stakeholders Involved

- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Policy makers
- Researchers

Study Type

- COS for clinical trials or clinical research


- Consensus meeting
- Delphi process

The initial phase of the study involved extracting outcome items of importance from 35 face-to-face and telephone interviews and four focus groups with 55 participants (people living with dementia n = 17; care partners n = 18; health and social care professionals n = 15; policy makers n= 4; researchers n = 1) and a literature review of existing research, key reviews and policy documents. We initially produced a long list of 170 outcome items which we distilled into 54 outcome items in four conceptual categories (friendly neighbourhood and home, independence, self-managing dementia symptoms, quality of life) [25].Thesecond phase includes a modified Delphi approach and a consensus meeting and is outlined in this paper.