Towards capturing meaningful outcomes for people with dementia in psychosocial intervention research: A pan-European consultation.

Publisher: Wiley Country of Publication: England NLM ID: 9815926 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1369-7625 (Electronic) Linking ISSN: 13696513 NLM ISO Abbreviation: Health Expect Subsets: MEDLINE

Original Publication: Oxford, UK : Wiley, c1998-

Outcome Assessment, Health Care* ; Patient Participation* ; Referral and Consultation* ; Social Participation*; Dementia/*psychology; Aged ; Aged, 80 and over ; Europe ; Female ; Health Status ; Humans ; Male ; Quality of Life

Background: People with dementia are often marginalized and excluded from influence, also in relation to dementia research. There is, however, a growing requirement for inclusion through Patient and Public Involvement (PPI), but there is still limited knowledge on how researchers can fully benefit from the involvement of people with dementia in the development and testing of psychosocial interventions. This paper describes the results of a pan-European consultation with people with dementia, synthesizing their views on outcomes of psychosocial interventions.
Objective: To involve people with dementia in establishing what are meaningful outcomes when participating in psychosocial interventions.
Setting and Participants: Consultations took place at four divergent sites across Europe, involving twenty-five people with dementia from nine European countries.
Methods: The methods used for the consultation were developed through an iterative process involving people with dementia. Data from the consultation were analysed from a thematic analysis approach.
Results: The results suggested that people with dementia wish to participate in interventions that enhance their well-being, confidence, health, social participation and human rights. This highlights a need for improvements in psychosocial research to capture these outcomes.
Discussion and Conclusions: Involving people with dementia in discussions of psychosocial interventions has enhanced our understanding about meaningful outcome measures in research and methods of data collection. This study suggests that new outcome measures in psychosocial research are needed where concepts of positive psychology and social health can guide innovation and outcome measurement.
(© 2018 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

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Keywords: consultation; dementia; methods; outcome measures; patient and public involvement; positive psychology; psychosocial; quality of life; social health

Date Created: 20180620 Date Completed: 20190621 Latest Revision: 20210109

20231215

PMC6250864

10.1111/hex.12799

29920881