Mental health policy and practice across Europe: an overview

Carers and families 375
In this chapter we begin by distinguishing between two distinct impacts of
caregiving: subjective and objective burdens. We then go on to review briefly
aspects of both and to highlight the health and socioeconomic consequences
for all. Risk factors which can help identify a potential burden are discussed. We
then look at the role that access to services, backed up by legislation, can have in
supporting family carers. Voluntary family associations also play a vital role in
empowering and supporting family carers. We end by looking at how they have
evolved across Europe and consider the policy challenges to be faced.
The objective and subjective impact of care
Since the early 1960s, family ‘burden’ has been divided into objective and
subjective dimensions (Hoenig and Hamilton 1966). The former relates to the
practical problems experienced by an individual’s family, such as the disruption
of family relationships, constraints in social, leisure and work activities, financial
difficulties and a negative impact on physical health. The latter describes
the psychological reactions that family members experience; for example, a
feeling of loss, depression, anxiety and embarrassment in social situations, the
stress of coping with disturbing behaviours and the frustration caused by changing
relationships (Lanzara et al. 1999; Pereira and de Almeida 1999; Ostman
and Hansson 2000; Jungbauer and Angermeyer 2002; Magliano et al. 2002;
Mory et al. 2002; Ohaeri 2003; Ostman and Hansson 2004; Magliano et al.
2005a, 2006b; Moller-Leimkuhler 2005). While objective burden is predominantly
related to the close contact between families and people with mental
health problems, subjective burden is determined by many factors, including
the resilience and different coping mechanisms used by carers, the strength of
relationships prior to the onset of illness, the level of support from social
networks and the availability of, and access to, formal services.
The impact of caregiving
We begin by concentrating on some of the subjective burdens faced by carers of
people with different types of mental health problems and then go on to consider
some of the objective impacts on health and socioeconomic status that are
common to all. To date, most research on the impact of caregiving has focused
on cognitive disorders such as dementia and Alzheimer’s disease. However, the
number of published studies on caregiving burden, in general, has increased in
recent years, with more attention being paid to other mental health problems,
most notably psychoses (Ohaeri 2003; Schulze and Rossler 2005).
Psychoses
Following a first admission for treatment a substantial proportion of individuals
with psychoses will return to live with their relatives. This can be a long-term
commitment: in one study looking at 179 people with schizophrenia initially