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Qual Life Res. 2020 Jan;29(1):237-251. doi: 10.1007/s11136-019-02317-3. Epub 2019 Oct 8.

A validation study of the ICECAP-O in informal carers of people with dementia from eight European Countries.

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Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands.
Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands.
Erasmus School of Economics, Erasmus University Rotterdam, Rotterdam, The Netherlands.
Karolinska Institutet, Department for Neurobiology, Care Sciences and Society, Division of Neurogeriatrics, Solna, Sweden.
CEDOC, Chronic Diseases Research Centre NOVA Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal.
School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland.
Medical Faculty, Institute for Health and Nursing Science, Martin Luther University Halle-Wittenberg, Magdeburger Straße 8, 06112, Halle (Saale), Germany.
Norwegian National Advisory Unit ON Ageing and Health, Vestfold Health Trust, Tønsberg, Norway.
Department of Geriatric Medicine, Oslo University Hospital, Oslo, Norway.
Faculty of Medicine, Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
Dementia Services Development Centre Wales (DSDC), Bangor University, Bangor, UK.
IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy.
Alzheimer Center Limburg, Faculty of Health, Medicine and Life Sciences, School for Mental Health and Neuroscience, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center +, Maastricht, The Netherlands.
Centre for Research & Development, Uppsala University/County Council of Gävleborg, Gävle, Sweden.



The 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.


Convergent 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.


The 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.


The 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.


Construct validity; Dementia; ICECAP-O; Informal care; Well-being


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