The unremitting burden on carers !!!!!

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.