Causes and rates of death in adults with learning disabilities

Background
Previous studies have shown that adults with intellectual 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.

Aims
To find out the rates, causes, place, and risk factors for mortality in adults with learning disabilities.

What we did
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.

What we found
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.  

What this means for policy and practice
These findings may help health workers, carers, and policy makers in actions to reduce deaths at young ages. An example is training 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.

The original paper can be found online at https://bmjopen.bmj.com/content/10/5/e036465

Page updated 7th July 2020