Previous studies have shown that adults with learning disabilities experience poorer health outcomes and higher rates of premature mortality compared to the general population. Most recent studies have not split adults with, from those without Down syndrome. Most have not studied risk factors for death. Data on causes of death varies. A better knowledge of these factors may provide a pathway to action to reduce deaths.
Our aim was to find out the rates, causes, place, and risk factors for mortality in adults with learning disabilities.
To do this, we counted the mortality rate for adults with learning disabilities compared with the general population. We examined their place of death. We also examined causes of deaths, and how many could have been stopped through better care. We then worked out person and health risk factors for death.
Over 15 years, 294 out of 961 (30.6%) adults with learning disabilities died. 64 out of 179 (35.8%) adults with Down syndrome died. 230 out of 783 (29.4%) adults without Down syndrome died. Deaths were more than five times as common for the adults with Down syndrome, compared with other people. Deaths were almost twice as common for the adults without Down syndrome. The difference in death rate compared with other people decreased as age increased. When other factors (like health problems) were taken into account, level of learning disabilities was not a risk factor for death.
Many types of causes of death were more common than in other people. The most common causes of death were dementia, then infections, for the adults with Down syndrome. The most common causes of death were breathing food or liquid into airways when trying to swallow/ breathing in vomit during heartburn/ choking, and lung infections, for the adults without Down syndrome. 29.8% of all the deaths could have been stopped by better care. This is more than twice as common compared with other people. 60.3% died in hospital. Adults who were tube-fed, older, smokers, and who had Down syndrome, diabetes, lung infections, epilepsy, hearing problems, or more prescribed drugs, were more likely to die.
These findings may help health workers, carers, and policy makers in actions to reduce deaths at young ages. For example, introducing training on how to avoid swallow problems/ choking. Also, spotting pain to address problems before they become advanced and less likely to respond to treatment. Reasonable adjustments to improve health care would also help.
Project lead: Sally-Ann Cooper
Research teams: Linda Allan, Nicola Greenlaw, Paula McSkimming, Adam Jasilek, Angela Henderson, Colin McCowan, Deborah Kinnear, Craig Melville.
Anna set up the Scottish Learning Disabilities Observatory with funding from the Scottish Government. She wants the Observatory to make Scotland fairer and healthier for people with learning disabilities and their families, by: Finding out the health problems people have Finding out how good or bad health care is Telling people about health and health care problems Finding ways to make health and health care better Checking if health gets better or worse over time Helping the Scottish Government, and staff who provide health and social services, to get it right for people with learning disabilities Anna is a doctor. She has done a lot of studies on the health of people with learning disabilities. Anna’s full name is Professor Sally-Ann Cooper.
Deborah is the Director of the Scottish Learning Disabilities Observatory and Professor of Health and Neurodevelopmental Conditions, in the School of Health and Wellbeing, at the University of Glasgow. Deborah is passionate about her research which aims to improve the health of people with learning disabilities and their families. She has worked on many different projects about people with learning disabilities including: cancer incidence, cancer screening, multi-morbidity (having two or more health conditions), oral health and COVID-19, to name a few. She has also worked on projects about the physical and mental health of family members who support someone with a learning disability. Deborah is committed to conducting research that has impact and works closely with self-advocates with learning disabilities, family carers and third sector organisations who are pivotal in all of her work and who have a shared vision of ensuring the human rights of all people with learning disabilities are recognised, supported and upheld. Read more about Deborah here.
Angela was formerly the Director for Policy and Impact for the Scottish Learning Disabilities Observatory and remains an affiliate team member, having moved in 2024 to work with the Scottish Government leading the development of annual health checks and learning disabilities data. Angela is interested in how evidence is used in policy making and was involved in many projects at the Observatory. These included: Understanding the impact of Covid-19 on people with learning disabilities The Research Voices Project Helping to set up the SPIRE learning disabilities data project Analysing information about drug prescribing for people with learning disabilities
Craig is a Professor of Neurodevelopmental Psychiatry in the School of Health and Wellbeing at the University of Glasgow. His work focuses on using evidence from research to inform the development of interventions and policy to improve the health of people with neurodevelopmental conditions. Craig has worked on clinical trials of complex interventions, such as psychological therapies, weight management and health checks in primary care. Evidence from epidemiological research has been central to the development of these clinical trials and his work with SLDO centres on how to use Scotland’s national datasets to understand and tackle the health inequalities experienced by people with neurodevelopmental conditions.
