Mental health policy and practice across Europe: an overview

Carers and families 379
2002). In another study of carers of people with dementia in England, Italy
and Sweden, few informal carers were found to be willing to give up caring for
their relatives even when the level of objective burden was great (McDaid and
Sassi 2001). Similarly, studies looking at depressive disorders report that, despite
problems, the majority of spouses are committed to remaining with their partner
(Fadden et al. 1987; Keitner and Miller 1990; Ellring 1999). More generally,
in a survey of nearly 1000 informal carers of people with a range of health
conditions, nearly half reported positive aspects of caring and felt that their
happiness would be reduced if they were to transfer their responsibilities to
someone else (Brouwer et al. 2005).
The economic consequences of caregiving
The desire and willingness of family members to provide care can sometimes
mean that policy-makers and other stakeholders treat informal care as a ‘free
resource’. However, it can entail significant economic costs for individuals and
society. Economic analysis is primarily concerned with the opportunity costs of
caring; i.e. what would have been done had an individual not been caring.
While the availability of family carers may reduce the need for professional
support, carers will incur a loss of time (and hence a cost) which they could
have used for work, or to pursue leisure activities. They may also incur additional
out-of-pocket expenses to support a relative financially and, as we have
seen, may suffer from both physical and mental health problems which again
can entail significant costs to the health system.
Inclusion of the full costs of caring can thus be very important in a comprehensive
economic analysis and could make a difference when decision-makers
have to determine whether it is cost-effective to introduce specific services or
programmes to support family caregivers or provide other interventions. It also
provides an indication of the costs that may fall on statutory services in future if
there is a shortage of such carers due to the ageing of the population in most
European countries. However, because of methodological difficulties in estimating
informal care costs, and often too narrow a focus solely on the health care
system alone, the cost to family carers has often been ignored within economic
analyses. In particular, identifying the best alternative use of time is not always
easy, particularly if a family carer already has been responsible, to some extent,
for an individual – for example, the parents of a child. This has led to a considerable
variation in estimates of the cost of caring (McDaid 2001).
Nonetheless, there is a growing number of studies that place a value on
family care, particularly in two areas: psychoses and dementia. One American
study estimated that the costs of lost employment to carers of people with
schizophrenia alone was approximately 17.5 per cent of the total costs of the
illness (Rice and Miller 1996). In one Italian study of the costs associated with
schizophrenia it was estimated that approximately 29 per cent were due to lost
employment, employment opportunities foregone and the leisure time costs of
family carers (Tarricone et al. 2000). Estimates from Australia suggest that the
annual costs to the 2379 carers of people with schizophrenia who had given up
the opportunity to work ranged from $AUS 51.5 million (Carr et al. 2003) to