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Keywords:

  • carers;
  • Dementia;
  • Down’s syndrome;
  • family;
  • staff

Accessible summary

Sometimes older people get confused and forget things and need lots of help: this is called dementia. People with Down’s syndrome are more likely to develop dementia than other people with learning disabilities. When people have dementia, they need extra help from their families or from their care staff.

Psychologists talked to families and care staff about what they knew about dementia, and what they found difficult about caring for somebody with Down’s syndrome and dementia. They were asked about what help they got from services and what help they would like in the future.

It was found that:

  • • 
    Most people found it hard looking after someone with Down’s syndrome and dementia.
  • • 
    Review meetings were very important to them. They asked to be there for assessments and meetings.
  • • 
    Most people wanted to know more about Down’s syndrome and dementia. They asked for a booklet about it and for someone to explain it to them.
  • • 
    Some people worried a lot about the future.

Summary

It is well established that people with Down’s syndrome are more likely to develop dementia than other people and that onset of dementia is likely to occur earlier at an earlier age. The article reports on a specialist service for people with Down’s syndrome and dementia. The service has offered dementia screening and assessment to people with Down’s syndrome for over 10 years and has also developed to offer support and training for carers. Semi-structured interviews were conducted with family carers, relatives and staff about the impact on them of caring for someone with Down’s syndrome and how the dementia service supports them in this role. The resulting data were analysed using interpretative phenomenological analysis. The responses provide rich insights into the areas of ‘knowledge and information’, ‘coping and support’ and ‘concerns about the future’. Interviewees also identified services they wanted for the future. As a result of this evaluation, a number of changes have been proposed and begun to be implemented within the service. The results have important implications for other health, social care and voluntary organisations.