Mental health policy and practice across Europe: an overview

chapter
sixteen
Carers and families of people
with mental health problems
Lorenza Magliano, David McDaid,
Susan Kirkwood and Kathryn Berzins
During the past two decades the responsibility falling on families to help in
providing care and assistance to people with mental health problems has
increased in most European countries. There has been a trend both towards
shorter hospital stays and a reduction of inpatient beds, coupled with a more
general shift towards providing community-based mental health care services
wherever possible (see Chapter 10). It is now estimated that between 40 and
90 per cent of people with mental health problems remain in close contact or live
with relatives who often provide them with long-term physical and emotional
support (Hogman and de Vleesschauwer 1996; Rose 1996; Ostman and Hansson
2001; World Health Organization 2001; Ostman and Hansson 2002b; Lauber
et al. 2003). These family members may have to undertake additional responsibilities
and tasks, especially where insufficient resources have been transferred
to community-based mental health systems (Kuipers 1993; Brand 2001).
These additional tasks and responsibilities, provided unpaid and informally,
are therefore often referred to as the ‘carer burden’. Although widely used, this
term can sometimes be perceived to be unduly negative, and while we concentrate
here on the challenges faced by caregivers and the support mechanisms
they require, it is very important at the outset to recognize that there are both
rewards and difficulties associated with the caregiving experience. A sense of
satisfaction may be derived by carers from knowing that they are able to help
and improve the quality of life of a loved one. ‘Carer burden’, however, does
convey a sense of the great demands and strains that carers often report, and it
can help to indicate a need to focus on integrated measures of physical and
mental well-being and socioeconomic status that can reduce the negative
aspects, and help reinforce the positive features of the caregiving experience.
Negative experiences for carers that go unchecked can also have an impact on
long-term outcomes for individuals with mental health problems.