‘It’s all changed:’ carers’ experiences of caring for adults who have Down’s syndrome and dementia

<jats:sec><jats:title>Accessible summary</jats:title><jats:p> <jats:list list-type="explicit-label"> <jats:list-item><jats:p> People who care for someone with Down’s syndrome and dementia were asked about what it was like being a carer. Four of the carers were brothers or sisters of the person who had dementia, and two were paid carers not family members.</jats:p></jats:list-item> <jats:list-item><jats:p> All carers say that they want more information about some of the health and social problems that come with having dementia.</jats:p></jats:list-item> <jats:list-item><jats:p> Carers said that they want to know more information and meet other carers and other people who have dementia.</jats:p></jats:list-item> </jats:list> </jats:p></jats:sec><jats:sec><jats:title>Summary</jats:title><jats:p>A qualitative interview study was undertaken to determine the information and support needs of carers of adults who have Down’s syndrome and dementia. The data were analysed thematically. Carers’ information and support needs were seen to change at pre‐diagnosis, diagnosis and post‐diagnosis. Helping carers to manage the changing nature of the adult with dementia is seen to be an essential part of the health professional’s role.</jats:p></jats:sec>