Background to the Research

• In the United Kingdom and elsewhere, the issue of how we respond to the growing need for care is of critical importance for society generally and women in particular. Research grounded in accurate understanding of the needs and wishes of carers themselves, and illuminating the reality of caring is crucial. This study examined the impact of caring on employment, health and social and family life. In addition, the project examined how and why people became carers, and the reality of informal care. The final strand of the study was to describe what services carers were receiving, their assessment of the services and their views on how society should respond to the growing need for care. A small separate study of ex-carers was also undertaken in the final stages of the project.

Research Approach

• A group of carers from Belfast was interviewed at twelve-monthly intervals over a three-year period. Ninety-three carers (16 men and 77 women) took part in the first stage of the project.
• This report presents the results of the first stage of the longitudinal study. Interviewees were selected from a larger pool of 115 carers. The sample was structured to ensure adequate representation of all caring situations.

Main Findings

• The majority (73%) of those cared for were entitled to the Attendance Allowance. In 1991 this was payable to adults of all ages and children aged over two where there was substantial need for care or supervision. The majority of those cared for had difficulties with walking, climbing stairs, bathing and dressing.
  
  
• Those cared for by women needed more care than those with male carers. In most cases the amount of care needed increased as time went on. No carer reported a decline in the volume of support required across the three years of the project.
  
  
• Informal care does not usually mean care for a limited period provided by the young and fit. Two thirds of carers were over 50 years of age and one was over 80. The majority (59%) of carers had been caring for over five years and 17 had been caring for over 20 years.
  
  
• Carers and those cared for may themselves give very positive accounts of the help they get from neighbours and friends. The reality is very different. In this study, carers provided 71% of all of the personal and physical care required. The help given by other relatives was often limited to a less active form of care. Moreover, the State, not friends and neighbours, was the next most important source of support.
  
  
• 24% of carers reported that they had sustained an injury from lifting while 26% of the carers interviewed at the first stage said their health had declined as a result of their caring responsibilities.
  
  
• Significant minorities of carers reported symptoms of poor mental health across the three year project. Women carers, though younger on average, appeared to be in poorer health and under more strain than male carers.
  
  
• Female carers were engaged in the most demanding forms of caring of longest duration. In addition, nearly half (48%) of these women had other caring responsibilities apart from those which were the focus of the study, such as caring for dependents and/or another person with a disability.
  
  
• The impact of caring on employment was more severe for women than men. Male carers were typically caring for an elderly spouse and had therefore retired, or were nearing retirement, when they became carers. Women were younger and caring for husbands, children, parents and other people with disabilities. Forty eight per cent of carers interviewed in the first stage of the study had dropped out of employment or had not been able to return to work as a result of caring responsibilities. A further 15% were finding it difficult to combine caring with employment.
  
  
• Over the following three years, four more carers dropped out of employment and no instance of a carer moving the other way into paid work was noted.
  
  
• A minority (23%) of carers appeared to be socially isolated, with friends or relatives visiting them only once a fortnight or less often. In the first round of interviews the majority of carers reported they had less time to visit others and a minority reported fewer people calling with them.
  
  
• As time went on the trend was for contacts to decrease. With regard to family life, the study indicates the pressure on married female carers. Caring for others could affect relationships with husbands and children.
  
  
• There is a clear need for carers to be given more advice and information more speedily. At least 20 carers appeared to have suffered some financial loss as a result of delays in finding out about the benefits to which they were entitled.
  
  
• With regard to services this study showed that carers and policy makers may have different and contradictory agendas. Policy statements in HPSS have emphasised the importance of better targeting of services and improvements in quality. By contrast, carers in the survey seemed reasonably satisfied with quality of services, what they wanted was an increase in quantity.
  
  
• The study found little evidence that the reorganisation of community care in 1993 had alleviated the demand for more support amongst carers. Whilst five instances of improvements in provision were reported post April 1993, there were 13 examples of a deterioriation in services being noted. Hours were cut or the quality of care was affected because staff seemed to be under more pressure and in a hurry than before.
  
  
• Mismatches in the assumptions and preferences between policy makers and carers were further apparent with regards to the future. The majority of carers assumed that the State, not relatives would take over when they could no longer care. Moreover, when asked about ways of meeting increased need, these carers overwhelmingly considered that the appropriate way forward was an increase in services provided by the State.
  
  
• Sixteen interviews were conducted with people whose caring responsibilities had ended as a result of the death, or admission to some form of institutional care, of the person cared for. Two main themes ran through these discussions:
  • There were problems of constructing a new life and sense of identity and doing so with depleted resources: poorer health, more limited employment prospects, more limited social lives. All of those interviewed reported severe health problems in the post-caring phase. It was as though they had waited until they had the time to be ill.
  • There was an abrupt end to services and benefits, which the person cared for had attracted, with little attention to the possibility that the ex-carer might need advice and assistance.
    
    
• There is clearly a need for more research in this field but the need for greater support is already evident.