Developing communication resources about sleep studies for individuals with learning disabilities
With thanks to Dr Eve Hirst for her message on the importance of adapted communication for people with Down syndrome.
One potential barrier to working more effectively with the Down syndrome community is the scarce availability of tools for high quality two-way communication.
People with Down syndrome have differing degrees of learning disabilities, ranging from mild to severe, which can make it more difficult for individuals to communicate their needs, and also present challenges for practitioners who may not be fully trained in appropriate communication styles.
The DSSRN is very happy to be working with Dr Eve Hirst on developing and distributing new resources, including sign supported videos and social stories, designed to simplify complex health conditions, investigations and procedures.
We are developing an accessible resource pack to communicate the importance of sleep studies. This will consist of an easy-read written resource, Makaton symbol-supported information, and Makaton sign-supported video.
Dr Hirst is passionate about improving communication in medical contexts for people who have intellectual disabilities. She is a Makaton tutor and also a Signalong Tutor, has two siblings who have Down syndrome, and she teaches other medical professionals to use Augmentative and Alternative Communication (AAC) to better support their patients.
Dr Hirst says: “We know that communication is essential to delivering good quality, safe, and dignified care to our patients. If we can adapt our communication to meet the needs of the individual in front of us, I firmly believe we can make a practical and palpable difference to the health inequalities experienced by people with a learning disability, such as those with Down syndrome.
I encourage all health professionals, if you haven’t already, to look locally to your hospital, trust, or region for training in multi-modal communication, such as Makaton. This will equip you with the expertise, such as learning to use signs, or gestures, and symbols, to communicate effectively with patients you encounter who rely on these tools to understand and be understood, and give these patients the time and the space to advocate for themselves.”
Dr Hirst was the winner of the Research, Innovation and Education Award at the Northern Care Alliance Staff Awards 2021. She designed and co-led the roll-out of an interactive Signalong training program for her colleagues in Oldham hospital’s adult and paediatric A&E departments. The Oldham project won two awards: the 'Oldham Care Organisation Award for Research, Innovation and Education', as well as the Northern Care Alliance award for the same. The project was also shortlisted for the Greater Manchester Health and Care Champion awards for the 'Equality' category.
If you are a health professional wanting to learn Makaton/Signalong in your workplace, please feel free to contact Eve: eve.hirst@doctors.org.uk
You can find out more about Makaton here: www.makaton.org
Further updates to come!
Down Syndrome Awareness Month October 2025: Dr Goffredina Spano on sleep as a missing piece in Down syndrome research
Thanks to Dr Spano for this message during Down Syndrome Awareness Month.
I'm Goffredina Spano, I'm a senior lecturer at Kingstown University. My research program explores the relationship between sleep and different outcomes, including cognition in different neurodevelopmental conditions, including Down syndrome.
My journey with Down syndrome started long time ago in 2004, when Julia was born. During that time, I was doing my Masters in psychology, and I was trying to look at different aspect of cognition. During that time, and during that work, I realized that something very important was missing in our equation of understanding the development of individuals and people with Down syndrome: and that missing piece was sleep.
This realization pushed me to go and look elsewhere. I was very lucky: there was a group at the University of Arizona that had just started a very interesting study looking at the relationship between obstructive sleep apnoea and different cognitive outcomes in children with Down syndrome. I took the this opportunity, flew to the University of Arizona, and joined their group. Since then, we have been looking at different aspects of sleep in children with Down syndrome across their lifespan in relation to different aspects of life, quality of life, and behaviour.
We now know that sleep isn't just a time where the brain rest. We actually take care of all the things that we cannot do while we're awake. This is very important when we think about neurodevelopmental conditions like Down syndrome, because during this period, we actually put together all the information that we learn during the day. We integrate new information. If you don't sleep well, as is the case for children with Down syndrome, this integration doesn't happen. This is what we found in a previous study, in terms of memory consolidation in children with Down syndrome, who were not using the sleep interval to remember in the same way as their neurotypical peers. This means that even the best educational and behavioural interventions might not be as effective as they can be, if we do not address sleep problems in this population.
Addressing sleep isn't just about getting a good night’s sleep. It's about supporting learning, development, and well-being in this population. That's why I'm very proud of to be part of the Down Syndrome Sleep Research Network, where we come together, (researcher, clinician, and different people) to share knowledge, advance research - and ultimately, the goal is improving sleep and other outcomes in people with Down syndrome. Thank you!
You can find out more about Dr Spano’s academic work at this link.
Launch Event for the Down Syndrome and Sleep Research Network - London, 9th June 2025
The DSSRN was launched earlier this year with keynote speakers across many different research areas. We are excited to see the new developments that will come from so much skill and dedication focused on tackling challenges with sleep in the Down syndrome community.
Watch the overview of the launch day to see what we covered, and signposts of where we’ll go from here.
Short interviews with some of the speakers and attendees at the launch can be seen at our YouTube playlist about Down Syndrome and Sleep Research.
Sleep Webinar Part 1: Dr Liz Corcoran - Why focus on research about sleep and Down syndrome?
Edited transcript of YouTube video.
It is lovely to have you all here for this webinar about sleep, and the particular issues our loved ones with Down’s Syndrome might face in the night time hours, or at other times.
I want to take a moment to tell you a little about who we are, as an introduction, in case you have never heard of us. The Down’s Syndrome Research Foundation has been around for over 20 years.
I am Dr Liz Corcoran, I am a sibling to David, who has Down’s syndrome. He is the adult you see in some of the photos here, and he has kindly shared his pictures from his sleep study a little while ago. He was very happy to share with people, particularly with younger people who have to face doing a sleep study as well: just to show them that it wasn’t scary at all. Actually, he has been managing to wear his CPAP machine every night - most nights!
That’s why I am involved with Down’s syndrome and the Down’s Syndrome Research Foundation. We are the UK's only Down’s syndrome research charity and our vision is for people with Down’s syndrome to have a long, healthy, and happy life. We know also that families are impacted as well.
We want to bring you the best scientific research needed for the issues that affect our community. We do this by funding and promoting groundbreaking research, as we want to improve understanding of Down’s syndrome. A further important part of what we do is supporting the human rights of people with Down’s syndrome and their families, through advocacy. You may have heard of some of our recent victories. We're very happy about the restarting of the Down’s syndrome APPG (All Party Parliamentary Group) and the Down’s syndrome Bill that's being proposed and moving through Parliament. We’re very happy to be a small part of the work that's going on there, behind the scenes.
Why does research matter? It has important impacts. First, it means that people with Down’s syndrome can get evidence-based treatment. There are lots of questions – particularly holes in research around sleep. However, there are also lots of other places where we lack good guidance and good evidence on the best treatments for people with Down’s syndrome, when they have particular conditions or problems. We want them to live richer lives, to have the best quality of life, and to have healthier lives.
I often talk to local groups, about nutrition, and about lifestyle: sleep is a huge part of that. As a foundation we want to support sleep research and promote understanding of good sleep.
We also do advocacy work because we want people with Down’s syndrome to have choices and to be able to live the life they would want to live.
That includes helping to make sure there's up-to-date research, and that they have equal rights to research funding. At the moment, you may not be aware that just over five pounds per person with Down syndrome per year is spent on research. We think this is terrible, and we'd like to see that number change. We need to lobby the government to improve this, but we also need to mobilize the community, to understand why research matters.
This is just one aspect. I want to spend a little bit of time inspiring you, particularly that this is just one aspect, sleep that impacts people with Down’s syndrome.
If I can encourage you to get behind the work of the Foundation and support research in any way you can, we would be so grateful.
This segment is part of a full length Webinar.
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