Ms Bridget Vincent, Monash Health
Date and Time
Theme / Track
Presentation Format
BACKGROUND People with Down syndrome have a very high risk of developing Alzheimer’s Disease (AD) with 95% of people developing Alzheimer's Disease, at a median age of only 54 years of age. There are 15,000-17,000 Australians with Down syndrome, who are now living longer than ever given improved healthcare access and social inclusion. Despite these very high rates of dementia, there are few memory services specialised in assessment of individuals with intellectual disability. The aim of this study was to explore attitudes around the need for timely diagnosis among families of individuals with Down syndrome with a view to meeting these needs in the delivery of a pilot memory service. METHODS: In this qualitative descriptive study, 25 family members of people with Down syndrome participated in semi-structured interviews as part of a broader qualitative research project. Applied thematic analysis was conducted with inductive and deductive coding. RESULTS: Themes included the role of timely diagnosis in modifying outcomes, avoiding diagnostic overshadowing and accessing education. Family members worried about the emotional impact of diagnosis disclosure on the individual. DISCUSSION: Families of people with Down syndrome value access to timely diagnosis of AD. As people with Down syndrome live longer, it is critical to provide appropriate services and post-diagnostic supports. It will be critical to consider the views of older adults with Down syndrome and their families in service design and delivery.
Keywords
Authors