Family carers of people with learning disabilities: common themes across caring Neelima Yannamani Asif Zia Nauman Khalil Abstract Here, we review the role of carers in general and specifically within the learning disability services. The role of carers is recognized but not always appreciated by the healthcare services despite guidance from the Depart- ment of Health and the Royal College of Psychiatrists. Service users in learning disability have complex needs, and carers provide life-long care. Carers have reported positive and negative experiences in their caring role; however, the negative experiences of caring can be minimized by providing better support and education to the carers. The resources available to provide this support are not equally accessible to all carers, e.g. respite care. Carers will have to go through many changes in service provisions. In return for the care they provide, carers would like services to listen to them. Regular carers’ needs should be assessed and person- centred support must be offered to carers by responsible services. Keywords altruism; carers; challenging behaviour; Down’s Syndrome; enmeshment; epilepsy; ethnic minority; learning disability services; legislation; life-long care; perpetual parenthood; service provision; service users; transitions Introduction It is estimated that carers save £87 billion a year in potential care costs, which is more than the total annual spend on NHS. 1 Surveys carried out throughout the 1990s have consistently found that at any time there are around six million carers in the UK. 2 Approximately 60% of them care for people with physical disability, 15% care for people who are both physically and mentally unwell and 7% provide care for people with mental illness. 3 These figures themselves present a compelling reason for supporting carers. A carer is a person who provides or intends to provide a substantial amount of care to another person on a regular basis, other than as an employee or under contract or as a voluntary organization. 4 General population An estimated 125,000 carers in Britain live with a relative who has severe mental illness. 5 Carers spend more time with service users than do professionals, and this needs to be acknowledged by services. Research shows that family carers have a clear view about what they value and find most helpful from the services they receive. 6 A proactive, flexible, consistent, accessible, and reliable service is valued the most. The other attributes that are appreciated are honesty and respect towards their opinions, expertise, and experience as carers. Staying with the family can have benefits for the service users and their carers. Service users experience continuity of care, trusting relationships, better communication and support from the wider family. Carers have reported feeling satisfied in providing care to their loved ones. The nature of the caring relationship has been variously conceptualized along a ‘stress versus altruism axis’. 7 A caring situation is a complex one involving at least two people within the family who will occa- sionally be taking reciprocal caring roles. This reciprocity is an important feature of the relationship between carers and their children, especially as the carer becomes older. 8 Although there are many positive aspects of caring, research has highlighted the ways in which families can be disadvantaged. The impact of exhaustion on carers’ physical and mental health cannot be underestimated. Carers suffer from physical, psycho- logical and social problems 9 ; carers may not seek help and appropriate management for their physical problems because of their focus on the person they are caring for. Psychological problems include high levels of stress, isolation, enmeshment and high expressed emotion. There are also socio-economic implications for carers. Family members give up regular jobs to care for children or spouses, and this affects their financial status; high rates of marital breakdown have also been reported. This has further implications for the rest of the family and can potentially lead to a downward spiral in relation to a number of socio-economic measures. Carers have recently been exposed to an array of new termi- nologies and jargon due to changes in British legislature, e.g. Mental Health Act 2007, Mental Capacity Act 2005 and Depri- vation of Liberty Safeguards 2009. One of the key themes of these documents is provision of care in the ‘least restrictive environ- ment’ with a significant role of carers in the management of service users. Similar changes are taking place in social care entitlement and provision. Paid and family carers need to be educated and trained about the legislation, and supported to enable them to act in the best interests of the people they care for. The experience of minority ethnic and black families is qualitatively worse in relation to a number of key indicators. These include high levels of unmet needs, poverty, poor housing, Neelima Yannamani MBBS MRCPsych is a Speciality Trainee in Psychiatry of Learning Disabilities and is currently working with Cambridgeshire & Peterborough Foundation NHS Trust, UK. She has special interest in issues relating to carers. Conflicts of interest: none declared. Asif Zia MBBS MRCPsych is a Consultant Psychiatrist and Clinical Director in Learning Disability Services Cambridgeshire & Peterborough Foun- dation NHS Trust. His special interest is diagnostic and management issues in Asperger’s Syndrome. Conflicts of interest: none declared. Nauman Khalil MBBS MRCPsych is a Consultant Psychiatrist in Learning Disability Services Cambridgeshire & Peterborough Foundation NHS Trust. He is currently working on improving service users’ and carers’ involvement in Learning Disability Services in the Trust. Conflicts of interest: none declared. THE SOCIAL CONTEXT OF LEARNING DISABILITY PSYCHIATRY 8:11 441 Ó 2009 Elsevier Ltd. All rights reserved.