Severe intellectual disabilities linked to 24-year shorter life expectancy, study finds

The researchers analyzed data from the Office for National Statistics and the Learning Disabilities Mortality Review (LeDeR) programme covering 1,301 adults with severe or profound intellectual disability who died in England between 2021 and 2023. They compared these with 2,626 adults with mild or moderate intellectual disability and 536,311 adults from the general population who died in 2022.

People with severe or profound intellectual disability died at an average age of 58, compared with 65 for those with mild or moderate intellectual disability and 82 for the general population. Avoidable deaths were defined as those occurring before age 75 from preventable or treatable causes. Pneumonia and epilepsy were the leading avoidable causes, with rates notably higher than in the other two groups, followed by cerebrovascular disease.

The analysis also found stark ethnic disparities within the group. Those from Black, Asian and other minority ethnic backgrounds were likely to die 14 years younger than their white peers. The researchers said this variance may reflect additional barriers to healthcare for ethnic minorities and how compounding inequalities worsen outcomes for people with disabilities.

Jon Sparkes, chief executive of the learning disability charity Mencap, called the findings shocking but "sadly unsurprising." He said much more must be done to ensure people with the most complex needs can access care. "Organisational failings were identified in more than 40% of deaths reviewed last year, showing the way the NHS just isn't designed to work for people with a learning disability," he said.

Dr Michael Kwan Leung Yu, the study's first author and a postdoctoral research associate at King’s College, said the LeDeR programme provides a unique national lens. "Its scale allows us, for the first time, to examine avoidable deaths among adults with severe or profound intellectual disabilities through a population-based analysis and explore this in greater detail," he said. He called for targeted interventions including annual health checks, vaccination programmes and timely management of pneumonia and epilepsy, with particular attention to ethnic minority groups.

Dr Rory Sheehan, co-first author and senior clinical lecturer at King’s institute of psychiatry, psychology and neuroscience, said pneumonia and epilepsy are largely treatable. "Seeing them as leading causes of avoidable death in this group points to a gap between the care people could receive and the care they are getting," he said. Closing that gap means ensuring basic interventions, health checks, vaccination and timely treatment reliably reach these adults.