Older family carers lack support, information and partnership working remains the exception rather than the norm


Previous work to consider the issue of older parents of adults with learning disabilities has identified that a significant proportion are lone carers, often with a wide range of health problems of their own, and reporting high levels of anxiety as a result of their caregiving responsibilities.

The researchers in this study set out to get in-depth understanding of the experiences, concerns and future perspectives of older parents with life-long and continuing full-time responsibilities for their child with a learning disability.

What they did was develop a semi-structured interview schedule which they used to interview eight parents, six mothers and two fathers from different family units, who had cared for their children since birth.

All of the parents interviewed were aged between 65 and 89.  Six were widowed, and two were married.

What they found was that

  • Parents lacked support
  • Parents did not receive enough information and practical resources
  • Some parents continued caring despite poor mental and/or physical health
  • All parents were concerned about their child’s future
  • Most parents said that they were unable to think about their future and their needs

The parents described their lives as a series of demanding caregiving tasks over long hours, and with limited support and information from the state. They all however continued to talk about their commitment to caring for their offspring with learning disabilities.

The authors point out however that there was a significant difference in experience between those who received adequate support and those who received minimal support. One parent carer who finally got some formal support from agencies described it as ‘life changing’.

One major concern highlighted by the study is the fact that some parent carers continue despite deteriorating mental and/or physical health because of the lack of alternatives.

Few of the parent carers had put in place any plans for the future of their offspring, although those who reported having some sort of plan were less likely to describe their feelings about the future so negatively.

The authors conclude that  the demanding role of  older parent carers is not fully recognised by health and social care professionals and that real partnership working is the exception rather than the norm. They point out that the lack of suitable care alternatives  prevents carers from moving on.

They make a number of recommendations for practice, including:

  • provision of information, advice and support to older parent carers caring over a prolonged period of time as quickly as possible
  • training and awareness raising for health social care professionals to enable rebuilding of levels of trust
  • development of strategies to help those carers who wish to cease caring.

The need for future alternatives: an investigation of the experiences and future of older parents caring for offspring with learning disabilities over a prolonged period of time, Cairns D et al., in British Journal of Learning Disabilities, 41: 73–82.

Link: A few years ago, the Older Family Carers Initiative, run by the Foundation for People with Learning Disabilities published a series of reports and some excellent guidelines on providing support to help inform not only practitioners, but commissioners and of course older family carers themselves of their rights and the kind of support they could might receive.

You can download these guidelines here: Good practice guidelines in supporting older family carers of people with learning disabilities

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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