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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., Highlights • Many people with dementia receive informal care; Scales Measuring the Impact of Dementia on Carers-D (SIDECAR-D) is a survey instrument measuring the burden of caring. • Two scoring systems are provided, the SIDECAR-D relative scale, which measures the relative burden of caring on a 0-100 scale, and the SIDECAR-D tariff, which measures the burden on a scale anchored at full health = 1 and dead = 0. • Utility decrements of SIDECAR-D items can be as great as –0.162 on the full health = 1, dead = 0 scale.

Objectives Carer quality-of-life (QoL) effects are recommended for inclusion in economic evaluations, but little is known about the relative performance of different types of QoL measures with carers. This study evaluated the validity and responsiveness of 3 care-related QoL measures (the Carer Experience Scale [CES], CarerQoL-7D, and ASCOT-Carer), 1 health-related QoL measure (the EQ-5D-5L), and 1 generic QoL measure (the ICECAP-A). Methods Validity and responsiveness were assessed in a UK sample of informal carers of adults with dementia, stroke, mental illness, or rheumatoid arthritis. A questionnaire containing the 5 QoL measures was posted to carers identified through the Family Resources Survey (N = 1004). Hypotheses regarding the anticipated associations between constructs related to the QoL of carers were tested to investigate construct validity and responsiveness. Results Each measure exhibited some level of construct validity. In general, larger effect sizes and stronger associations were detected for the ASCOT-Carer and ICECAP-A measures in the pooled sample and across all conditions. The 5 measures did not exhibit clear responsiveness to changes over a 12-month period in care recipient health status or hours of care provided per week. Conclusion The results of this study provide initial evidence of the validity of care-related, health-related, and generic QoL (capability) measures in informal carers of adults with 4 highly prevalent conditions. Care-related measures were not always more sensitive to constructs associated with QoL of carers compared with generic measures. The performance of the ICECAP-A was comparable with that of the best-performing care-related measure, the ASCOT-Carer.

Objective Theory and guidelines advocating the inclusion of informal care in economic evaluation have, in recent years, been accompanied by developments in the methods for capturing the costs and outcomes related to informal care. The objective of this study was to review applied economic evaluations to identify the methods used for, and implications of, including informal care in practice. Methods Searches of key databases were conducted to identify all full economic evaluations incorporating costs or outcomes relating to informal care. Information was extracted by using a standard template from all studies meeting the inclusion criteria. Results Thirty economic evaluations were identified that included informal care. Twenty-five of these studies costed carers' time input and 17 measured outcomes for carers. The reported cost-effectiveness of interventions was altered by including informal care, in some cases changing the key conclusions for health care funding. Conclusions Theory and methods development around informal care are yet to significantly permeate the applied literature; however, the results suggest that some funding priorities may change if they were to do so. The development of 1) a reference case for including informal care; 2) sensitivity analysis for contentious issues; and 3) a statement for the reason for excluding informal care, if this is deemed appropriate, may help to improve the way that informal care is included in economic evaluations in the future.