The views of people who care for adults with Down's syndrome and dementia: a service evaluation

It is well established that people with Downs 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 Downs syndrome and dementia. The service has offered dementia screening and assessment to people with Downs 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 Downs 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.