Developing a core outcome set for people with dementia living at home in their neighbourhoods and communities

Harding, Andrew and Morbey, Hazel and Ahmed, Faraz and Williamson, Paula and Keady, John and Leroi, Iracema and Swarbrick, Caroline and Holland, Fiona and Reeves, David and Hellstrom, Ingrid and Reilly, Siobhan Theresa (2017) Developing a core outcome set for people with dementia living at home in their neighbourhoods and communities. In: British Society of Gerontology, 2017-07-05 - 2017-07-07, Wales.

Abstract

Many systematic reviews of effectiveness of interventions for people with dementia have highlighted the variability in the outcomes assessed. This prevents comparisons of effectiveness across studies. This study, embedded in the Neighbourhoods and Dementia programme www.neighbourhoodsanddementia.org, seeks to develop a COS for use within non-pharmacological intervention studies aimed at people living with dementia at home. Public involvement in COS research is a developing area, to which this study is significantly contributing. The 4-phase study design includes: qualitative interviews/focus groups (including people living with dementia) and literature review; Delphi process; systematic review; and stated preference survey. This presentation will provide an overview of phase 1 and report on the development of a ‘long list’ of outcomes for the design of the Delphi (phase 2). This presentation will focus on how the experiences of people with dementia have been privileged in the development and design of the Delphi survey.