Probably more than one and a quarter million people in
Britain care for disabled or elderly people living in the
community.' Most of these people could not get by without
the support of their "carers." More than 10 years ago the
BMJ argued that the work of carers was not sufficiently
understood or supported.2 Since theh their contribution has
been better recognised and they have, indeed, become a
cornerstone of government policy for "care in the community.""I
Research into the experience of carers has also
expanded enormously, but still the support provided to
carers by statutory services is inadequate4` and unevenwith
women, who make up the bulk of carers, doing less
well."18
Most research has focused on those caring for older
people468 9 or for adults with disability and chronic illness. I'2l
The studies have often used small samples of people in
contact with services and have considered only the carers of
younger sufferers.'s'2 Most studied are the carers of those
who might otherwise have to stay in hospital for a long time
-that is, those with strokes"-'6 or with head injuries'"" or
who might need institutional care-those with dementia'"2'
or mental handicap.22-24
Family members both inside and outside the household
help support the dependent person,2526 but usually one
person-commonly the spouse or closest female relativeis
the main carer.79 26 Although caring is primarily "women's
work,"2" carers are a heterogeneous group; and their
response to caring has been related to their age, sex, and
relationship to the dependent person.'7 19 21 28 Also important
is whether the carer lives with the dependent person.'92'
Studies are difficult to compare because they have different
samples and designs, define carers in various ways,41528
vary in how they measure stress, and lack multivariate
analysis.' Furthermore, it may not be reasonable to extrapolate,
for example, from findings about the carers of people
with dementia to the carers of people with chronic physical
illness. Some general results have, however, emerged: stress
among carers is often associated with emotional distress and
mood disturbance among patients'51618 19; the psychosocial
sequelae of caring may continue and worsen over years" 18 29;
within categories of illness the carer's stress is unlikely to be
strongly related to the severity of the patient's disability,
especially in the longer term"' 18 28 ; but the personality of the
carer and her premorbid relationship with the dependent
person may be important predictors of stress.' 019 21'
These results would be more comprehensible if we under stood better which aspects of caring cause most distress.
Several studies of patients with different conditions identify
the mood and social behaviour of the patient as most
important," 161831 while others suggest that the daily grind,
the repetitiveness of tasks, and the need for constant
watchfulness cause declining energy and morale.92024
Perhaps too much emphasis has been put on measuring
anxiety and depression among carers. Those who "adjust to"
or "cope with" loss of employment,7 poverty,9 exhaustion,
social isolation,29 and disrupted family life'3 are still "handicapped."
We should study more the quality of life and
suffering of carers and not just whether they have clinical
indicators of stress. In this broader perspective the importance
for the carer's life of the physical aspects of the patient's
disability and the effectiveness ofthe statutory services might
become clearer.
Many of the main needs of carers have been identified.47
They want: recognition of their work; planned respite care
for their charges and free time; information about both disabilities
and services'7 (why do so few carers see the helpful
publications of voluntary and statutory organisations?)32;
physical help; and money-the recent extension of invalid
care allowance to married women may modestly improve the
circumstances of a relatively small proportion, about 40 000
women.33 Carers also need continuity of support, which will
help them respond to changing circumstances and will
prevent the feeling of abandonment. This support and
reassurance should continue until the carer is no longer
willing or able to cope, and the carer should be confident that
high quality institutional care will then be available.
No single programme will meet the needs of all carers, but
interest and advice from the primary care team would
certainly help. The team should also be advocates on behalf
of carers. Providing access for carers to a single accessible
"key person" would meet many of their needs.'2226 But the
need for much improved coordination of support has been
evident for decades-and look what has happened.
