September marks World Alzheimer’s Month, a time to raise awareness about a condition that particularly affects our Down syndrome community. People with Down syndrome face a much higher risk of developing Alzheimer’s than the general population – something we all need to understand better.
The statistics are stark. According to the Alzheimer Biomarkers Consortium-Down Syndrome (ABC-DS), 70% of adults with Down syndrome will develop Alzheimer’s at some point in their lives. Even more concerning, virtually all people with Down syndrome show brain changes linked to Alzheimer’s by age 40.These numbers highlight why we urgently need better ways to understand, diagnose, treat and prevent Alzheimer’s in our community.
Exciting new research is exploring how sleep quality might affect when dementia begins. The Down Syndrome and Sleep Research Network (DSSRN), recently launched by DSRF UK, is investigating these vital connections.
Dr Stephanie Brown from Cambridge University is leading groundbreaking research into how improving sleep could potentially reduce dementia risk for people with Down syndrome. This gives us real hope for practical ways to protect brain health.
Research in this area is moving forward rapidly. Recent studies have explored using sleeping pills to reduce harmful protein buildup that causes Alzheimer’s. Other research has found that women with Down syndrome may be at higher risk than men – pointing to the need for treatments tailored to everyone’s specific needs.
The DSSRN will soon launch a public education blog sharing information about sleep and Down syndrome research. They’re also planning practical workshops for families and carers on improving brain health through better sleep.
Researchers are working with the All-Party Parliamentary Group on Down Syndrome to raise government awareness and secure funding for this crucial research area.
We hope the upcoming guidance on the Down Syndrome Act will recognise the urgent need for improved health services to tackle Alzheimer’s for people with Down syndrome.
This research gives us hope that we can change these statistics and improve outcomes for our community.
This article is based on content from the Down’s Syndrome Research Foundation. For the full article and more detailed information, read the original piece here.
To learn more about the Down Syndrome and Sleep Research Network or to sign up for their ‘Defeating Dementia in Down Syndrome’ newsletter, email: CIDDRG@medschl.cam.ac.uk
Edinburgh Napier University is looking for participants to take part in a participatory action research project aiming to collaboratively develop person-centred care emergency healthcare for people with intellectual (learning) disability.
In partnership with people with intellectual (learning) disabilities, formal/informal carers, and emergency healthcare clinicians the project will aim to:
The project will welcome people with learning disabilities to engage in one-to-one interviews, focus groups and/or a workshop event.
Please see poster below for more details
Carers UK has opened its annual State of Caring Survey for 2025, for unpaid carers (or former unpaid carers) who are looking after a disabled, older or seriously ill relative or friend.
This annual survey is the UK’s most comprehensive research into the lives and experiences of unpaid carers. It plays a vital role in shaping policy and improving support services by providing robust evidence to governments, local authorities, and health and social care providers.
Please click on the survey link below if you would like to participate. The survey may take around 30 minutes to complete.
State of Caring Survey 2025
The survey closes on 10th August and results will be published later this year.
For more details, please visit the Carers UK website.
13 May 2025
Down’s Syndrome Scotland (DSS), the charity that supports and advocates for people with Down’s syndrome and their families in Scotland, remains concerned about the implications of the Assisted Dying Bill currently being considered by the Scottish Parliament.
While we recognise the Bill’s definition of ‘terminally ill’ states that a person is not considered terminally ill solely because they have a disability (as defined by the Equality Act 2010) or a have a ‘mental disorder’ (as defined by the Mental Health Act 1983), the lived experience of our members does not allay the fear that, in practice, people with Down’s syndrome are still experiencing discrimination including non-prioritisation for treatment in some healthcare settings, which can result in their premature and avoidable deaths[1][2].
It is in this context – the reality of what our members have experienced in practice – that we do not believe the safeguards, currently written into the Bill, would sufficiently address that fundamental concern.
We are also concerned about coercion and pressure on disabled people who might be seen as – or feel they are seen as – a ‘burden’ or ‘less valuable’, leading them to request assisted dying when they may not genuinely desire it for themselves.
[1] O’Leary et al. Early death and causes of death of people with intellectual disabilities: A systematic review. J Appl Res Intellect Disabil 2018a;31(3):325–342. doi: 10.1111/jar.12417.
[2] O’Leary et al. Early death and causes of death of people with Down syndrome a systematic review. J Appl Res Intellect Disabil 2018b;31(5):687-708. doi: 10.1111/jar.12446
We recognise that this is a complex and sensitive issue and that there are differing views even within the disability community, where some advocate for autonomy and choice under their right to a private life (Article 8 of the Human Rights Act 1998).
Down’s Syndrome Scotland’s position of concern is informed by the lived experience of our community which was evident, at its worst, during the pandemic when their lives were deemed less valuable and, in a number of cases, they were not prioritised for treatment and ‘Do Not Resuscitate Orders’ were wrongly put in place[3]. It would be wrong to assume that the ignorance and prejudice which underpinned unacceptable clinical decision-making at that time, is something that only occurred in the pandemic years.
It is the potential unintended consequences of the Assisted Dying Bill that cause us most concern and until the current inequalities in health care and treatment experienced by people with Down’s syndrome in Scotland are fully addressed, our concerns about this Bill remain.
Downs Syndrome ScotlandT: 0300 030 2121 | E: info@dsscotland.org.uk | W: www.dsscotland.org.ukA Charitable Company Limited by Guarantee, registered in Scotland No. 356717. Charity No. SC011012
[3] Scottish COVID-19 Inquiry: https://www.covid19inquiry.scot/evidence/witness-statement-provided-edward-mcconnell-behalf-downs-syndrome-scotland-dated-06112023
The STRAVINSKY team is holding a free public webinar on Tuesday 6th May at 18.00-19.00 BST to provide an update on the project’s progress, as well as the current situation around COVID-19 for people with weakened immune systems.
STRAVINSKY (Stratification of Clinically Vulnerable People for COVID-19 Risk Using Antibody Testing) is a 2-year study, which aims to build our understanding of who is most clinically vulnerable to COVID-19 infection and identify individuals or disease groups at highest risk. Using the information, STRAVINSKY hopes to assess the effectiveness of COVID-19 booster vaccine programmes or new treatment strategies for these groups.
Free Public Webinar – Find out more and register
STRAVINSKY Study– Find out more about STRAVINSKY
Ethically approved by University College Cork, Ireland and funded by the Lejeune Foundation, the study, titled the DS Biome: Down Syndrome Gut Microbiome Sibling Study explores the gut microbiome in relation to digestive sensitivities, bowel disorders, and age-related conditions such as dementia in individuals with Down syndrome.
Click here to find out more about the study and what’s involved.
Down’s Syndrome Scotland has been involved with the FEAST project, coordinated by Heidelberg University, and with active participation from the Sant’Anna School of Advanced Studies in Pisa and the University of Gastronomic Sciences in Pollenzo, the aim is to make it easier for all people in Europe to eat healthier and more sustainable food, with a particular interest in vulnerable populations. Within the scope of the project, they aim to actively involve individuals with Down’s Syndrome and their families to gain deeper insights into the nutritional and metabolic challenges they face that require special attention. For this purpose, two questionnaires were designed, one for the person with Down’s Syndrome and one for their caregivers. The results will be used to inform the European Commission on the special needs of persons with Down’s syndrome regarding food to support the design of new policy from which they can benefit.
Parent/Carers can complete the survey here.
Individuals with Down’s syndrome (aged 6+) can complete the survey here.
Find out more about FEAST here.
The Scottish Government are looking to recruit people to sign up to their research programme and take part in research sessions to help shape the future of Scotland’s benefit system.
The Scottish Government are looking to speak to individuals who’ve had experience of benefits in Scotland, including individuals who:
For more information and to register interest in taking part, please click here.
Down’s Syndrome Scotland responds to the latest research findings on premature and avoidable deaths within the learning disability population in ScotlandEddie McConnell, Chief Executive of Down’s Syndrome Scotland reacted to the research findings with dismay, he said: “We should all be appalled at these findings. It is completely unacceptable in 2025 that people with learning disabilities, including people with Down’s syndrome, are dying prematurely from causes of death that are preventable and avoidable.
For our own community of people with Down’s syndrome, we have known for too long that they are dying prematurely. The original research carried out in 2017 by the Scottish Learning Disability Observatory, revealed that people with Down’s syndrome were dying, on average, 28 years earlier than the general population.What is additionally concerning in these latest findings is that ‘Down’s syndrome’ is identified as the most commonly recorded cause of death among adults with learning disabilities in Scotland.
We need to understand, with some urgency, why medical practitioners are still listing ‘Down’s syndrome’ as a cause of death. Down’s syndrome is a genetic condition, it is not an illness and it cannot kill you. We are deeply concerned that the actual cause of death may be going unrecorded in many of these premature deaths and this leads us to question whether the presenting health condition has been identified and treated, in many of these cases. It is entirely possible that many of these individuals could havelived longer had their health condition (and not their disability) been fully diagnosed and appropriately treated.
He continued: “When we speak with families, they tell us that there are many clinicians and health professionals who respond positively and provide appropriate care and treatment. However, the experience of other families is not so positive with many of them telling us that medical practitioners and health professionals often see a person with Down’s syndrome instead of seeing a patient who has acute and urgent health needs.
People with Down’s syndrome deserve equal access to good quality healthcare and medical treatment. These new findings suggest that the conflation between disability and health by medical practitioners is still significantly prevalent and could be masking the identification of underlying health conditions and their subsequent treatment.It is evident from this research, that we still have much to do to challenge perceptions and change practice – many of these premature deaths are avoidable, preventable and treatable.
For the families left behind, there remain many unanswered questions about what happened to their loved ones in their final days of their lives.We should all be greatly concerned at what these findings are telling us.”
To read the full news release from SLDO (Scottish Learning Disability Observatory) here and for the SLDO Mortality Briefing here
We are delighted to welcome the publication of the Scottish Standard Care Pathway for Babies Born with Down’s syndrome and pleased to have collaborated with our colleagues across the NHS community in Scotland in developing this critical resource. The pathway is intended to guide the initial care for a newborn baby with a diagnosis of Down’s syndrome. It is intended for use by all health professionals involved in the care of babies with Down’s syndrome across Scotland . Having a pathway in place means health professionals can have the confidence in sharing the news that the baby has Down’s syndrome, using the right language. It will also improve their understanding around caring for babies born with Down’s syndrome and supporting them and their parents through the neonatal period.