What is Important to People with Dementia Versus Trial Outcomes : A Neighbourhoods and Dementia Study

Reilly, Siobhan Theresa and Harding, Andrew and Morbey, Hazel and Ahmed, Faraz and Williamson, Paula and Leroi, Iracema and Keady, John (2017) What is Important to People with Dementia Versus Trial Outcomes : A Neighbourhoods and Dementia Study. In: International Association of Gerontology & Geriatrics, 2017-07-23 - 2017-07-27.

Abstract

The outcomes assessed in non-pharmacological interventions for people with dementia vary, making it difficult to compare their effectiveness. This study, part of the Neighbourhoods and Dementia programme, seeks to create a core outcome set for use within intervention studies and has a rigorous 4-phase study design: qualitative interviews/focus groups and literature review; Delphi survey; systematic review; and stated preference survey. This presentation will focus on Phase 1, comparing outcomes identified through the qualitative work to those measured by previous non-pharmacological intervention trials. Thirty-one interviews and four focus groups were conducted with people with dementia, care partners, health and social care professionals, and policy makers, service commissioners and research leaders and the outcome measures extracted from 129 studies. The interviews and focus group were analysed using a thematic framework to identify outcomes considered important to people with dementia from their own perspective and the other stakeholders’ perspectives. Comparing the outcomes identified in the literature to those from the qualitative data revealed differences in the emphasis of the outcomes, indicating that the outcomes previously used to evaluate interventions do not necessarily reflect what is important to people with dementia. For example, within previous studies activities were assessed in terms of frequency; however, in the interviews it became clear that the meaningfulness of the activities rather than the frequency is important. Creating this core outcome set to evaluate non-pharmacological interventions will enable better comparison of the effectiveness of the intervention and ensure that the outcomes considered are important to people with dementia.