Working with elderly carers of people with learning disabilities and planning for the future

Jane Hubert is Senior Research Fellow and Honorary Senior Lecturer in Social Anthropology in the Department of Psychiatry of Disability at St George’s Hospital Medical School (Cranmer Terrace, London SW17 0RE). Her interests include social and cultural aspects of learning disabilities, and family perspectives. Sheila Hollins is Professor of Psychiatry of Learning Disability at St George’s Hospital Medical School, and Honorary Consultant Psychiatrist in the South West London Community NHS Trust. One of her children has a learning disability and has made the transition to an adult life away from home. Her research interests include bereavement and learning disability. The majority of people with learning disabilities in the UK live at home with their families, usually with their parents (Mental Health Foundation, 1996) or – more commonly in later life – with one parent, usually their mother. Nowadays, people with learning disabilities live much longer than they did in the past, with the result that there is also an expanding population of elderly parents who are continuing to care for a son or daughter well into old age. Historically, many people with learning disabilities did not survive into old age, either as a result of the physical ailments concomitant with their learning disability (such as people with Down’s syndrome) or through lack of social and medical care. Over the past few decades, however, the life expectancy of people with learning disabilities has progressively improved, thus making it increasingly likely that more people with learning disabilities will outlive their parents (Walker & Walker, 1998) and live in supported accommodation elsewhere. Better access to health care, advances in medical treatment, and improvement in social care, have all helped to increase life span, and causes of death of people with learning disabilities are increasingly the same as in the ageing population as a whole. However, the main cause of death is still (nontubercular) respiratory disease, which is not true of the general population (Hollins et al, 1998). The increased population of older people in the community consists of two distinct groups: first, those who have been resettled in group homes or specialist units, after living for many years in an institution, and those who have lived in the community all their lives, the majority with their families; and, second, a smaller proportion (increasing as adults outlive their parents) living independently or in group homes.