Measuring Quality of Life in Carers of People With Dementia: Development and Psychometric Evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR)

Abstract

Background and Objectives A 2008 European consensus on research outcome measures in dementia care concluded that measurement of carer quality of life (QoL) was limited. Three systematic reviews (2012, 2017, and 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 QoL of dementia carers (family/friends). 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 hypothesized); responsiveness (effect sizes: D: moderate; I and S: small); MIDs (D = 9/100, I = 10/100, S = 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 organizations.

Introduction of a Management Toolkit for Lewy Body Dementia: A Pilot Cluster‐Randomized Trial

“…Further work should investigate the impact of wider implementation of the toolkits, either through a much larger trial (which would need to include >400 subjects) or through other methods including clinical audit or realist evaluation. Future research should also investigate other outcomes, including those that may be more relevant and salient to people with Lewy body dementia and their carers, and positive outcome measures (for both people with dementia and carers) such as resilience, coping, and efficacy 39,40 …”

“…Future research should also investigate other outcomes, including those that may be more relevant and salient to people with Lewy body dementia and their carers, and positive outcome measures (for both people with dementia and carers) such as resilience, coping, and efficacy. 39,40 Written informed consent was obtained for all participants with capacity, for those without capacity consultee written assent was obtained. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this work is consistent with those guidelines.…”

UK General Population Utility Values for the SIDECAR-D Instrument Measuring the Impact of Caring for People With Dementia

“…Development and evaluation followed Consensus-Based Standards for the Selection of Health Measurement Instruments, 19 including interviews (N = 42), 20 , 21 to generate an item pool and psychometric evaluation of the initial item pool. 22 This resulted in 3 instruments, SIDECAR-D (18 items), which measures the direct impact of caring for someone with dementia; SIDECAR-I (10 items), which measures the indirect effect; and SIDECAR-S (11 items), which measures support and informational needs. 22 …”

“… 22 This resulted in 3 instruments, SIDECAR-D (18 items), which measures the direct impact of caring for someone with dementia; SIDECAR-I (10 items), which measures the indirect effect; and SIDECAR-S (11 items), which measures support and informational needs. 22 …”

“…Development and evaluation followed Consensus-Based Standards for the Selection of Health Measurement Instruments, 19 including interviews (N = 42), 20,21 to generate an item pool and psychometric evaluation of the initial item pool. 22 This resulted in 3 instruments, SIDECAR-D (18 items), which measures the direct impact of caring for someone with dementia; SIDECAR-I (10 items), which measures the indirect effect; and SIDECAR-S (11 items), which measures support and informational needs. 22 This article details a valuation study of SIDECAR-D. Two measures are presented, the SIDECAR-D relative scale (SIDECAR-D-RS), which measures the relative impact of caring for someone with dementia on a 0 to 100 scale, and the SIDECAR-D tariff, which gives the impact on a scale with full health = 1 and dead = 0.…”