Abstract

PurposeThe pressure on healthcare budgets remains high, partially due to the ageing population. Economic evaluation can be a helpful tool to inform resource allocation in publicly financed systems. Such evaluations frequently use health-related outcome measures. However, in areas such as care of older people, improving health outcomes is not necessarily the main focus of care interventions and broader outcome measures, including outcomes for those providing informal care, may be preferred when evaluating such interventions. This paper validates a recently introduced well-being measure, the ICECAP-O, in a population of informal carers for people with dementia from eight European countries.MethodsConvergent and discriminant validity tests were performed to validate the ICECAP-O using data obtained in a sample of 451 respondents from Germany, Ireland, Italy, the Netherlands, Norway, Portugal, Sweden and the UK. These respondents completed a number of standardized questionnaires within the framework of the Actifcare project.ResultsThe ICECAP-O performed well among informal carers, in terms of both convergent and discriminant validity. In the multivariate analysis, it was found to be significantly associated with the age of the person with dementia, EQ-5D-5L health problem index of the person with dementia, carer–patient relationship, care recipient CDR, carer LSNS Score, the PAI score, and Perseverance Time.ConclusionThe ICECAP-O appears to be a valid measure of well-being in informal carers for people with dementia. The ICECAP-O may therefore be useful as an outcome measure in economic evaluations of interventions aimed at such informal carers, when these aim to improve well-being beyond health.

Highlights

  • Dementia is highly prevalent in today’s society

  • The aim of this paper was to determine the validity of the ICECAP-O in a relatively large, eight-country population sample of informal carers for people living with dementia

  • The multivariate regressions showed that the age of the person with dementia, the EQ-5D-5L health index of the person with dementia, carer–patient relationship, care recipient Clinical Dementia Rating (CDR), carer Lubben Social Network Scale (LSNS) Score, the carer Positive Affect Index (PAI) score, and Perseverance Time all had a significant relation with the carer ICECAPO score

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Summary

Introduction

It was estimated that worldwide 50 million people lived with dementia in 2018, and with the ageing population this number is expected to increase to 82 million by 2030 and further to 152 million by 2050 [1] With these increasing numbers comes an increase in the magnitude of care required. Extended author information available on the last page of the article are frequently the ones to provide (part of) this care [2]. These informal carers may be unprepared for the physical and emotional demands that caring entails and many carers experience considerable strain and well-being losses due to their caregiving tasks [3, 4]

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