Changes in accommodation experienced by people with Down Syndrome and dementia in the first five years after diagnosis

Research that has tracked living situation changes is lacking for people with Down syndrome post-diagnosis of dementia. Extant studies have not considered reasons for a move, the stage at which it happened, and how involved in the decision the person with Down syndrome was. To study this, a postal questionnaire was used with 35 carers of persons with Down syndrome in Scotland who had been diagnosed with dementia during the previous five years. Results showed that there are fewer accommodation changes in the early stages of dementia among people with Down syndrome than have previously been suspected and that confusion exists over the interpretation of existing care models. Findings also revealed that adults with Down syndrome were often denied the opportunity to take part in discussions about their future accommodations and there was a lack of forward planning on the part of carers.