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.
Adaptability of sleep and the ‘sleep privilege’: the need for new research
How much should parents and caregivers worry about sub-optimal sleep? This issue was recently brought to our attention by Professor Alice M Gregory, a keynote speaker at the recently launched Down Syndrome and Sleep Research Network (DSSRN).
Sleep issues are over-represented and under-researched in the Down syndrome community. This gap is a driving motive for the DSSRN, and through this new research network, we hope to accelerate knowledge and effective interventions in this area.
The effect of broken sleep often weighs on parents and carers. This includes the health impact of poor sleep on family members with Down syndrome, but also the consequences of long-term interrupted sleep on caregivers themselves.
Prof Gregory has been involved in research with particular interest for caregivers. Her presentation at the DSSRN launch, “Type 1 diabetes as a prototypical condition challenging what we know about sleep”, opened up very interesting considerations about the pitfalls of an exaggerated focus and concern about quantifying and qualifying sleep.
Sleep is certainly more important for health and development than we have realised historically, but there are adaptive patterns that are even less understood, which may help compensate for some quantifiable sleep deficits.
This ability to adapt is also an under-researched area. Exploring this further will bring solid evidence that can help shape practice and guidance. This may be very good news for many people who simply cannot secure the ‘sleep privileges’ that others enjoy, and may ease some of the worries that come along with poor sleep.
We believe that this topic is just one of many areas that will benefit from the support of the DSSRN, bringing researchers together to change what we know about sleep in the DS community.
For further details on this topic, you can read a newly published editorial in the Journal for Child Psychology and Psychiatry, by Professor Alice Gregory et al, “Sleep privilege – research and clinical recommendations for when sleep cannot be optimal”.
World’s first research network focused on sleep issues and Down syndrome launched 9th June 2025
Researchers from institutions across the UK gathered in London to foster cooperation in tackling sleep disorders that can profoundly affect health and development in the Down syndrome community.
The Down Syndrome and Sleep Research Network (DSSRN) was officially launched on Monday at the conference hall of the National Council for Voluntary Organisations, as an initiative to bring scientists together to concentrate on one of the highest priorities and most promising focal points for improving quality of life for people with Trisomy 21.
Sleep issues are common in people with DS, being detected up to ten times more than in typically developing peers. Researchers are keen to explore how improvements in sleep could positively impact development, cognition, chronic illnesses, and also longevity in a population whose life expectancy is at least 20 years lower than average.
Presenters included academics and researchers from University of Cambridge, Kingston University, Royal Holloway, Great Ormond Street and other institutions, presenting on their individual work and setbacks they have faced as researchers. A panel discussion with five interdisciplinary researchers generated a lively conversation on the challenges and opportunities in this area.
Keynote speaker Dr Lizzie Hill (Senior Lecturer in Sleep Physiology, University of the West of England (UWE Bristol) said “All of us in this room have heard something to the effect that ‘people with Down syndrome don’t sleep well’ or 'it's just part of the condition', but that doesn't mean we shouldn't investigate and treat these as we would for anyone else.”
A poll of attendees on the day showed that 55% of attendees were currently involved in research, and 45% planning / would like to get involved, but experiencing barriers including lack of funding, lack of time and high workload, lack of research skills and knowledge, lack of support, bureaucracy and admin issues, ethics and regulatory processes, difficulty finding collaborators. Many of these issues were addressed on the day to explore ways forward.
The DSSRN has secured funding for its startup year with generous grants from Hospital Saturday Fund, the Baily Thomas Charitable Trust, and the Sir Samuel Scott of Yews Trust, and the Launch Event was sponsored by Inspire Medical Systems and Idorsia. The DSSRN’s founding and launch have been coordinated by the Down Syndrome Research Foundation UK (DSRF UK), a charity promoting and funding medical research to improve the lives of people with Down syndrome since 1996.
DSRF UK’s Chair Dr. Elizabeth Corcoran said: “It has been a dream to bring these highly renowned researchers together to begin pooling their knowledge and expertise. We have great hope that with their combined insights, we’ll see breakthroughs in science in this area. This will yield new treatments that will give people with Down syndrome better sleep, from early childhood to adulthood, which will be a foundation for much healthier and longer lives.”
If you wish to stay in contact for updates, please fill out the form here: https://dssrn.org.uk/contact
Queries for the Down Syndrome and Sleep Research Network can be directed to: info@dssrn.org.uk