The incidence of healthcare use, ill health and mortality in adults with intellectual disabilities and mealtime support needs.
Lung infections—not food—are the top killer of adults with ID who need mealtime help, so screen for cough and fever at every visit.
01Research in Context
What this study did
The team followed adults with intellectual disability who need help at meals.
They used UK medical and death records to see how often these adults visit doctors, get sick, or die.
The goal was to learn if eating problems lead to poor health or if other issues are at play.
What they found
Adults who need mealtime support use the doctor twice as much as other adults.
They also die twice as often, but the main cause is lung infections, not food or choking.
In other words, coughs and fevers kill more than diet does.
How this fits with other research
Garwood et al. (2021) looked at US death records and found the same pattern: lung and airway illness top the list.
Kovačič et al. (2020) tracked the same group in Australia and saw heavy ER use and quick bounce-backs to hospital, matching the high care load.
Rose et al. (2000) warned about poor diet and weight gain in UK residential homes, yet Perez et al. (2015) show diet is not the main killer—an apparent contradiction that clears up when you see death records point to infection, not food.
Why it matters
If you serve adults with ID who need mealtime help, add a quick lung check to every routine visit. Ask about cough, listen to breath sounds, and push for fast flu shots. You may prevent the real cause of early death while still handling diet goals.
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02At a glance
03Original abstract
BACKGROUND: Adults with intellectual disabilities (ID) experience a wide range of eating, drinking and/or swallowing (EDS) problems, for which they receive diverse mealtime support interventions. Previous research has estimated that dysphagia (difficulty swallowing) affects 8% of all adults with ID and that 15% require some form of mealtime support. People with ID (whether they require mealtime support or not) also experience a greater burden of ill health and die younger than their peers in the general population with no ID. METHODS: Using an exploratory, population-based cohort study design, we set out to examine health-related outcomes in adults with ID who receive mealtime support for any eating, drinking or swallowing problem, by establishing the annual incidence of healthcare use, EDS-related ill health, and all-cause mortality. This study was conducted in two counties in the East of England. RESULTS: In 2009, 142 adults with mild to profound ID and a need for any type of mealtime support were recruited for a baseline survey. At follow-up 1 year later, 127 individuals were alive, eight had died and seven could not be contacted. Almost all participants had one or more consultations with a general practitioner (GP) each year (85-95%) and, in the first year, 20% reportedly had one or more emergency hospitalizations. Although their annual number of GP visits was broadly comparable with that of the general population, one-fifth of this population's primary healthcare use was directly attributable to EDS-related ill health. Respiratory infections were the most common cause of morbidity, and the immediate cause of all eight deaths, while concerns about nutrition and dehydration were surprisingly minor. Our participants had a high annual incidence of death (5%) and, with a standardized mortality ratio of 267, their observed mortality was more than twice that expected in the general population of adults with ID (not selected because of mealtime support for EDS problems). CONCLUSIONS: All Annual Health Checks now offered to adults with ID should include questions about respiratory infections and EDS functioning, in order to focus attention on EDS problems in this population. This has the potential to reduce life-threatening illness.
Journal of intellectual disability research : JIDR, 2015 · doi:10.1111/jir.12167