ABSTRACT

The longer life expectancy of people with Down’s syndrome has increased awareness of the link between Down’s syndrome and younger onset of dementia, typically Alzheimer’s disease. A diagnosis of dementia changes the caring role of family members and health and social care support services who, until that point, had commendably focused on supporting independence and community activities. This chapter discusses the fictitious example of Robbie, a 46-year-old man with Down’s syndrome and dementia living alone with outreach support from a social care provider and with family nearby. Issues such as changes in his behaviour and health are considered along with suggestions of strategies that can be put in place for support, both medical and non-drug. The difficulty in explaining dementia to people with Down’s syndrome is acknowledged with a framework suggested that is inclusive of both Robbie and his peers. It is important for Robbie and others ageing with Down’s syndrome that we work towards adapting to, and anticipating, such changes rather than reacting, often too late.