For people with Down syndrome, Alzheimer’s disease is not a rare or late‑life condition. It is a highly predictable aspect of ageing that brings distinct clinical and support challenges.
People with Down syndrome have a very high known risk of developing Alzheimer’s disease. Due to having an extra copy of chromosome 21 – which carries the amyloid precursor protein (APP) gene – almost all adults with Down syndrome will develop the disease in their mid-fifties. This contrasts sharply with the general population, where the disease typically develops after the age of 65.
Recognising Alzheimer’s disease in Down syndrome is different
Diagnosing Alzheimer’s disease in people with Down syndrome can be complex. People experience changes that might be attributed to normal ageing or mental health issues, rather than recognised as signs of dementia.
One of the early indicators of the disease can be the emergence of behavioural and psychological symptoms of dementia (BPSD). Recognising these as signs of Alzheimer's disease is key to early diagnosis and effective support for this group.
Appropriate support
Geriatrician Dr Madeleine Healy is keen to improve support for people with Down syndrome who are experiencing BPSD. Her starting point is a cross-sectional study from Dementia Support Australia (DSA), the national behavioural support program funded by the Federal Government and run by HammondCare.
Since 2017, DSA has provided behaviour support to over 223 Australians with Down syndrome. Referrals to the service came from all over Australia, including 13% from remote and regional areas. Madeleine is delving into the data to get a better understanding of what was driving these referrals.
Common reasons for seeking support include agitation or aggression, nighttime behaviour, irritability and anxiety. Contributing factors like pain, mood disorders and carer approach were also cited.
By reviewing the data Madeleine hopes to provide a clearer picture of the changes people with Down syndrome might start to experience and the causes that underlie them. This in turn can enable earlier, accurate diagnosis and better symptom management – a crucial factor in supporting a person experiencing BPSD.
Harnessing the data to change the experience
Madeleine will present the results of this study at the International Dementia Conference 2026, in concurrent stream F on day 1. Along with the data she will give an overview of Down syndrome Alzheimer's disease, especially BPSD, offering practical strategies for support.
Improving dementia care for people with Down syndrome is not only a clinical challenge – it is a matter of equity, dignity and quality of life. As our understanding grows and services adapt, there is real potential to change the experience of Alzheimer’s disease for this community and those who care for them.
Visit the conference website to learn more about the rich concurrent and plenary program, and join us at the Hilton, Sydney on 4-5 June 2026.