Mental health policy and practice across Europe: an overview

376 Mental health policy and practice
living with other family members, more than half were still residing with them
15 years later (Brown and Birtwistle 1998). The impact, of course, is not just
restricted to those households where a person with psychosis lives with other
family members. In the UK700 study, for instance, half of all people with
schizophrenia had frequent contacts with at least one relative, and two-thirds
met their families more than once a week (Harvey et al. 2001a, 2001b).
The EPSILON study looked at the impact of schizophrenia in five different
cities across Europe – Amsterdam, Copenhagen, London, Santander and Verona.
This demonstrated that the most common consequences for families were
worries about their loved one’s health and future, as well as their own personal
safety and financial situation (Thornicroft et al. 2004). The impact was higher
when the person with schizophrenia lived with and/or had more contact with
their family. Other studies have also emphasized concerns about the behaviour
of people with psychoses – for instance, their restlessness, hypochondria, sleep
disturbances or aggressiveness (Grad and Sainsbury 1968; Bury et al. 1998;
Schene et al. 1998). Suicide attempts and depressive moods are also frequently
reported by relatives as contributing to subjective burden. The lack of independence
and social skills, low levels of interest in leisure activities and a poor
state of self-care are other aspects of the disorder with which relatives can have
difficulty coping (McCarthy et al. 1989).
All of these factors can contribute to reduced quality of life for caregivers. One
recent, albeit relatively small, study in Sweden which compared the parents
of people with schizophrenia to a random sample of the population reported
that these parents were significantly less satisfied with their quality of life;
moreover, there was a correlation between lower overall quality of life and
higher perceived burden (Foldemo et al. 2005). This impact on quality of life
can be long-standing. In one study, around one half of all relatives initially
experienced moderate or severe distress at the onset of caregiving, with little
change found 15 years later (Brown and Birtwistle 1998).
Affective disorders
Much less attention has focused on affective disorders, but like psychoses
they can also cause great distress for individuals and their families (Sartorius
2001). The partners of people with persistent depression, in particular, have
marked difficulties in maintaining social and leisure activities, complain about
a decrease in total family income and may have considerable strains placed
on their marital relationships (Jungbauer et al. 2004; van Wijngaarden et al.
2004).
Substantial subjective distress has also been reported in relatives of individuals
with bi-polar disorders. Again, burden is significantly related to symptoms
and changes in family roles. Burden has been found to be greatest among
family members who believe that their relative is able to control symptoms, and
among those who were aware of the prognosis of the illness. Moderate or great
distress in at least one of the domains of burden has been reported by as many as
93 per cent of caregivers (Perlick et al. 1999, 2001). The cyclical nature of bi-polar
disorders requires even more emphasis on the long-term assessment of the