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

Horton, Mike; Oyebode, Jan R.; Clare, Linda; Megson, Molly; Shearsmith, Leanne; Brayne, Carol; Kind, Paul; Hoare, Zoë; Al‐Janabi, Hareth; Hewison, Val; Tennant, Alan; Wright, Penny

doi:10.1093/geront/gnz136

Cited by 12 publications

(10 citation statements)

References 42 publications

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“…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 …”

Section: Discussionmentioning

confidence: 99%

“…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.…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2020

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Background Lewy body dementia, comprising both dementia with Lewy bodies and Parkinson's disease dementia, is challenging to manage because of a complex symptom profile and lack of clear evidence‐based management guidelines. Objectives We assessed the feasibility of undertaking a cluster randomized study of the introduction of an evidence‐based management toolkit for Lewy body dementia, assessing the outcomes for patients and carers as secondary measures. Methods We randomized 23 memory/dementia, movement disorder, or nonspecialist secondary care services to the management toolkit or usual care. People with dementia with Lewy bodies or Parkinson's disease dementia underwent assessments of cognition, motor and neuropsychiatric symptoms, and global outcome at baseline and 3 and 6 months. Healthcare, personal and social care costs, and carer‐related outcomes of carer stress, depression, and anxiety were also examined. Results A total of 131 participants were recruited (target 120), for whom 6‐month data were available on 108 (83%). There was a benefit of being in the intervention arm for carers (reduced Zarit Burden Scale [P < 0.01], reduced depressive symptoms [P < 0.05]), who also reported less marked patient deterioration on the global outcome measure (P < 0.05). There were no significant differences in other outcomes or in costs between groups. Conclusions The introduction of an evidence‐based management toolkit for Lewy body dementia was feasible and associated with some benefits, especially for carers. © 2020 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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

et al. 2020

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Section: Introductionmentioning

confidence: 99%

“… 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 …”

Section: Introductionmentioning

confidence: 99%

“…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.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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Objectives Dementia affects many people, with numbers expected to grow as populations age. Many people with dementia receive informal/family/unpaid care, for example, from a spouse or child, which may affect carer quality of life. Measuring the effectiveness of health/social care interventions for carers requires a value measure of the quality-of-life impact of caring. This motivated development of the Scales Measuring the Impact of Dementia on Carers-D (SIDECAR-D) instrument. This study aimed to obtain general population values for SIDECAR-D to aid incorporating the impact of caring in economic evaluation. Methods Members of the UK general public completed a best–worst scaling object case survey, which included the 18 SIDECAR-D items and EQ-5D-3L descriptions. Responses were analyzed using scale-adjusted finite mixture models. Relative importance scores (RISs) for the 18 SIDECAR-D items formed the SIDECAR-D relative scale measuring the relative impact of caring. The SIDECAR-D tariff, on the full health = 1, dead = 0 scale, was derived by rescaling EQ-5D-3L and SIDECAR-D RISs so the EQ-5D-3L RISs equaled anchored valuations of the EQ-5D-3L pits state from a visual analog scale task. Results Five hundred ten respondents completed the survey. The model had 2 parameter and 3 scale classes. Additive utility decrements of SIDECAR-D items ranged from –0.05 to –0.162. Utility scores range from 0.95 for someone affirming 1 item to –0.297 for someone affirming all 18. Conclusion SIDECAR-D is a needs-based scale of the impact on quality of life of caring for someone with dementia, with a valuation tariff to support its use in economic evaluation.

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A validation study of the CarerQol instrument in informal caregivers of people with dementia from eight European countries

et al. 2020

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Purpose Informal care constitutes an important part of the total care for people with dementia. Therefore, the impact of the syndrome on their caregivers as well as that of health and social care services for people with dementia should be considered. This study investigated the convergent and clinical validity of the CarerQol instrument, which measures and values the impact of providing informal care, in a multi-country sample of caregivers for people with dementia. Methods Cross-sectional data from a sample of 451 respondents in eight European countries, collected by the Actifcare project, were evaluated. Convergent validity was analysed with Spearman’s correlation coefficients and multivariate correlations between the CarerQol-7D utility score and dimension scores, and other similar quality of life measures such as CarerQol-VAS, ICECAP-O, and EQ-5D. Clinical validity was evaluated by bivariate and multivariate analyses of the degree to which the CarerQol instrument can differentiate between characteristics of caregivers, care receivers and caregiving situation. Country dummies were added to test CarerQol score differences between countries. Results The mean CarerQol utility score was 77.6 and varied across countries from 74.3 (Italy) to 82.3 (Norway). The scores showed moderate to strong positive correlations with the CarerQol-VAS, ICECAP-O, and EQ-5D health problems score of the caregiver. Multivariate regression analysis showed that various characteristics of the caregiver, care receiver and caregiving situation were associated with caregiver outcomes, but there was no evidence of a country-level effect. Conclusion This study demonstrates the convergent and clinical validity of the CarerQol instrument to evaluate the impact of providing informal care for people with dementia.

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

Cited by 12 publications

References 42 publications

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

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

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

A validation study of the CarerQol instrument in informal caregivers of people with dementia from eight European countries

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