Measuring quality of life in carers of people with dementia: development and psychometric evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR)

Research output: Contribution to journalArticle

Authors

  • Mike Horton
  • Jan Oyebode
  • Linda Clare
  • Molly Megson
  • Leanne Shearsmith
  • Carol Brayne
  • Paul Kind
  • Zoe Hoare
  • Val Hewison
  • Alan Tennant
  • Penny Wright

Colleges, School and Institutes

Abstract

Background and Objectives: A 2008 European consensus on research outcome measures in dementia care concluded measurement of carer quality of life was ‘in its infancy’ (Moniz-Cook et al. 2008, p.21). Three systematic reviews (2012, 2017, 2018) of dementia carer outcome measures found existing instruments wanting. In 2017, recommendations were published for developing reliable measurement tools of carers’ needs for research and clinical application. The aim of this study was to develop a new instrument to measure the quality of life (QoL) of dementia carers (family/friends).

Research Design and Methods: Items were generated directly from carers following an inductive needs-led approach. Carers (n=566) from 22 English and Welsh locations then completed the items and comparator measures at three time-points. Rasch, Factor and Psychometric (reliability, validity, responsiveness and Minimally Important Differences (MIDS)) analyses were undertaken.

Results: Following factor analysis, the pool of 70 items was refined to three independent scales: primary SIDECAR-D (direct impact of caring upon carer QOL, 18 items), secondary SIDECAR-I (indirect impact, 10 items) and SIDECAR-S (support and information, 11 items). All three scales satisfy Rasch model assumptions. SIDECAR D,I,S psychometrics: reliability (internal ≥.70; test-retest ≥.85); convergent validity (as hypothesised), responsiveness (Effect sizes: D Moderate, I and S Small), MIDs (A=9/100, B=10/100, C=11/100).

Discussion and Implications: SIDECAR scales demonstrate robust measurement properties, meeting COSMIN quality standards for study design and psychometrics. SIDECAR provides a theoretically based needs-led QoL profile specifically for dementia carers. SIDECAR is free for use in public health, social care and voluntary sector services, and not-for-profit organisations.

Details

Original languageEnglish
Article numbergnz136
JournalThe Gerontologist
Early online date5 Nov 2019
Publication statusE-pub ahead of print - 5 Nov 2019

Keywords

  • Carers, Dementia, Quality of Life, needs-led, Rasch measurement, Psychometrics