Carers of people with Down syndrome and dementia need access to information, review processes and futures planning


People with Down syndrome are more likely to develop dementia than those without and indeed this is more likely to occur at an earlier age, where clinical symptoms can occur when people are in their late 40s or early 50s.

There is also some evidence that there are some differences in clinical symptoms in people with Down syndrome and dementia when compared with people with learning disabilities due to other causes, with those with Down syndrome having a higher prevalence of mood changes, over-activity, auditory hallucinations and disturbed sleep.

The researchers in this study were interested in talking with carers of people with Down syndrome and dementia to help assess the impact of a specialist service which offered dementia screening and assessment and had developed to offer support and training for carers.

The aim of the study was to understand the ways in which carers made sense of their role and the way in which the specialist service could improve its support.

What they did was to carry out semi-structured interviews with family carers, relatives and staff covering the impact on them of caring for someone with Down syndrome and dementia and the ways in which the specialist service had supported them in their caring role.

They then analysed the contents of the transcriptions using a process of interpretative phenomenological analysis, an experiential qualitative approach which focuses on the lived experience of participants to try to make sense of the meanings of events or experiences states to the participants themselves.

They identified a range of themes including

  • knowledge and information
  • coping and support
  • concerns about the future

Most respondents experienced significant difficulties caring for someone with Down syndrome and dementia, but that review meetings with professionals were very important to help them make sense of what was happening with their relative. They also wanted access to more information about dementia and in particular the way in which it presented in people with Down syndrome, both in written form, for example they suggested the creation of a booklet, but they also wanted professionals to spend time talking through the issues.

Unsurprisingly, a key theme was concern about the future and what would happen to their relative when they were no longer able to cope with the caring role.

The authors point out that as a result of the evaluation, several changes have been proposed and are in the process of implementation within the service.

The views of people who care for adults with Down’s syndrome and dementia: a service evaluation, Furniss K et al., in British Journal of Learning Disabilities, 40: 318–327.

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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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