Down Syndrome and World Alzheimer’s Awareness Month
September is World Alzheimer’s Month – dedicated to raising awareness of a condition which is increasingly affecting the general population. This condition is particularly relevant to the Down syndrome community, where prevalence is much higher than average. To help increase awareness, we have gathered some resources and recent news that is important to know about both Down syndrome and Alzheimer's, and some helpful directions to look for more advice and practical help.
The Alzheimer Biomarkers Consortium-Down Syndrome (ABC-DS) says: “Did you know that 70% of adults with Down syndrome will develop Alzheimer’s at some point in their life? Virtually all people with Down syndrome have brain changes consistent with Alzheimer’s by age 40. This needs to change. The only way to change these odds is to better understand, diagnose, treat, and prevent Alzheimer’s in the Down syndrome community.”
Alzheimer’s and the Down Syndrome and Sleep Research Network (DSSRN)
There is an important but under-researched link between sleep quality and the onset of dementia. Researchers involved in DSRF UK’s newly launched Down Syndrome and Sleep Research Network (DSSRN) are keen to explore these connections in relation to Down syndrome. Improving sleep has the potential to decrease the risk of dementia in people with Down syndrome.
Dr Stephanie S. G. Brown Ph.D. is Senior Research Associate and Alzheimer's Research UK Fellow in the Department of Psychiatry at the University of Cambridge. At the launch of the DSSRN, she presented new research focused on the development of dementia in Down syndrome, investigating sleep as a mediating factor in the onset of Alzheimer's disease. You can sign up for the excellent ‘Defeating Dementia in Down Syndrome’ newsletter by emailing: CIDDRG@medschl.cam.ac.uk
We are eager to help build on research like this, to pioneer interventions and treatments that will improve brain health.
News on Alzheimer’s and Down Syndrome Research
It is becoming more evident that it is greatly worthwhile to invest in research on Down syndrome and Alzheimer’s. A few recent news articles have shown new leads in treatment possibilities, including an article in July 2025 exploring the possibility of using sleeping pills to reduce protein buildup that causes Alzheimer’s, and another article in August 2025 which identifies that women with Down syndrome are more at risk of developing Alzheimer’s than men. The article points out: “This insight points to the need for more sex-specific approaches in both Alzheimer’s research and treatment planning, especially in the design of clinical trials.”
Practical Action and Further Information
DSRF UK will soon be starting up a new public education blog on the DSSRN website, with information on sleep research and DS, including current research on the connections between quality of sleep and onset of dementia.
We are also planning to offer practical workshops for parents and carers via the DSSRN, on how to improve brain health through improved sleep. More information will be forthcoming as plans develop.
Researchers have been briefing the All-Party Parliamentary Group on Down Syndrome (APPGDS) with information specific to DS and Alzheimer’s, to bring awareness of this issue directly to the UK government and highlight the need for funding to be dedicated to this area.
It is also our hope that the upcoming Guidance on the Down Syndrome Act, due to be issued soon, will specifically take into account the need for improved health services related to tackling Alzheimer’s for people with Down syndrome.
