Down Syndrome and Alzheimer's Disease: A Qualitative Study Exploring Understanding and Perceptions of Dementia and Diagnostic Pathways Among People With Down Syndrome and Their Families

BACKGROUND: People with Down syndrome are at high risk of Alzheimer's disease. Dementia diagnosis and support are a growing challenge for health and social care systems. There is limited knowledge of the perceptions of dementia and dementia diagnostic pathways among people with Down syndrome and their families. METHODS: A qualitative study was conducted with individuals with Down syndrome and their families to explore knowledge around dementia and perceptions of dementia diagnostic pathways. Applied thematic analysis was conducted with inductive and deductive coding. RESULTS: Results showed that people with Down syndrome understood the concept of dementia. Families were aware of the association between Down syndrome and Alzheimer's disease, but some were reluctant to discuss this with their family member. Families lacked confidence in current dementia diagnostic pathways and worried about the future. CONCLUSIONS: As people with Down syndrome age, improved dementia awareness, medical and social care supports and tailored service design will be critical.