People with learning disabilities are dying, on average, 22 years younger than the general population, according to the latest LeDeR report.1
The reasons behind this are complex, but it is estimated that roughly half (49%) the deaths recorded in the 2021 report were avoidable.1
The five most frequently reported long-term health conditions for people who died in 2021 and received an initial review were: epilepsy (33%), cardiovascular conditions (33%), mental health conditions (32%), sensory impairment (25%), and dysphagia (23%).1
Dysphagia – the medical term for swallowing difficulties – is therefore a common condition experienced by people with learning disabilities. But despite its prevalence among this group, too many people with learning disabilities are dying from the complications associated with dysphagia, which can be avoided with the right care and management.
So why are so many people with learning disabilities dying from these complications? And what can be done to prevent these avoidable deaths?
Further reading: Common conditions made complex: let’s talk about constipation
Difficulties at any stage of the swallowing process are classified as dysphagia, but there are two main types:2
Both types can occur together but as they have different causes and symptoms most healthcare professionals will consider them separately.
Dysphagia can disrupt the normal process of feeding, eating and drinking and can lead to increased risk of choking, aspiration and asphyxiation.3
The signs of dysphagia include:4
However, many of those who aspirate do so silently (without any of the above signs), which may go unnoticed and have chronic health implications.
Dysphagia is strongly associated with poor nutritional status and weight loss,5 and can result in avoidable hospital admissions through dehydration, constipation and aspiration pneumonia, which can be fatal.2 Dysphagia is therefore associated with increased morbidity, mortality and reduced quality of life.
Aspiration occurs when something you swallow ‘goes down the wrong way’ and enters either your airways or your lungs. If food or drink becomes lodged in the lungs, harmful bacteria can grow, which can cause pneumonia.6
Most people can prevent aspiration by aggressively coughing up the food or drink, but some people with learning disabilities have an impaired coughing ability which makes this much more difficult to do.
For this reason, aspiration pneumonia is also common in older people and in patients with neurological or upper gastrointestinal conditions.7
Recent studies estimate that about 15% of adults with learning disabilities require support with eating and drinking and around 8% have dysphagia. However, this figure is likely to be an underestimate, as the signs of dysphagia (particularly when it is mild) are often missed.2
Dysphagia is more common in people with learning disabilities than the general population because people with learning disabilities may have certain behavioural factors such as pica (eating inedible objects), issues with ‘cramming’ food, or eating and drinking quickly.8
People with learning disabilities may also have physical, medical, or behavioural issues associated with their condition. Low muscle tone, sensory problems, food refusal, low endurance, or issues with oral motor skill development can all lead to problems that make eating and drinking difficult.9
People who have conditions which are associated with learning disability, such as Down’s syndrome and Prader Willi Syndrome, are also at high risk of dysphagia.9,10
According to Public Health England, the issue of dysphagia in people with learning disabilities may be complicated by co-occurring physical health issues, psychiatric, communicative, cognitive and behavioural issues.
One study found a link between the side-effects of neuroleptic medications and dysphagia, and since people with learning disabilities are more likely than others to be prescribed these types of anti-psychotic medication, this puts them at higher risk of complications.11
Adverse outcomes may be more likely in people with learning disabilities who are unable to verbally communicate their dysphagia related experiences, as they are less likely to receive the support they need to eat and drink safely.8
Having a learning disability may also make it more difficult to learn compensatory strategies and retain skills, which may also increase the risk of adverse events.8
An examination of cause of death certificates in 2012 found that on average, people with learning disabilities were nine times more likely to die from lung inflammation caused by solids or liquids or foreign bodies in the windpipe (aspiration pneumonia) than people who do not have learning disabilities.3
In 2018, the number of people with learning disabilities dying from dysphagia complications remained high, and the LeDeR report found that 16% of deaths were attributable to aspiration pneumonia.12
As a result, NHS England and NHS Improvement created a national working group that has developed and promoted resources to improve dysphagia management and reduce preventable mortality resulting from the condition.12
The group is co-chaired by a person with a learning disability, and membership includes representation from NHS England, NHS Improvement, NHS provider trusts and social care.
NHS England also collaborated with Skills for Care and held a national event which focused on improving awareness and knowledge of dysphagia in people with a learning disability. Furthermore, as part of Learning Disability Week 2019, the group developed a communication strategy to spread information on prevention, risk management and treatment of dysphagia.12
As a result of these measures, in 2021, the number of deaths due aspiration pneumonia dropped to just 3.1% of all respiratory deaths.1
While it is positive that deaths from aspiration pneumonia have significantly reduced in recent years, aspiration pneumonia caused by dysphagia is still a major risk for people with learning disabilities. But this risk can be significantly reduced when the good practice is learnt and implemented.
Appropriately managing dysphagia can improve patient outcomes and reduce the risk of adverse events from occurring.
Managing dysphagia often requires a multidisciplinary approach, and may involve input from dieticians, physiotherapists and nurses, however, speech and language therapists (SaLTs) nearly always play a key role.2
SaLTs will assess the individual’s swallowing abilities, and then create a diet plan. While some people will require a pureed diet, others will be able to manage soft textured foods. Some may also require liquids to be thickened to be able to drink them, for example.
SaLTs can also help people with dysphagia to control the speed and pace at which they eat, as well as guiding postural care to help with swallowing and decrease the risk of aspiration.
They will work closely with support workers and carers and teach them how to modify diet and provide tips and tricks to help to reduce the risk of aspiration (i.e. ensuring the person eats in a calm, distraction-free environment).
The guidance should be short and simple so that it is easy to remember and follow, and carers should be told the reasoning behind the guidance and refreshed on the guidance regularly, as this has been linked to better compliance.2
Whatever the requirements, expert advice is essential to ensure that food and drink can be managed and the complications of dysphagia are avoided.
The Royal College of Speech and Language Therapists warn that dysphagia cannot be managed by speech and language therapy services alone, and should be managed in collaboration with care homes community organisations where appropriate.13
The college recommends that SaLTs highlight to care homes (or other relevant care leaders) their requirement to manage dysphagia, and inform them about:
Care homes should also be informed about the number of staff who are required to be able to identify the signs and symptoms of swallowing disorders.
Staff should then be trained on how to optimise nutrition and hydration for their residents with dysphagia, with one key worker named to champion appropriate dysphagia assessment and management.
The Royal College of Speech and Language Therapists has created a guide known as the ‘Feeding Safely Routines’, which highlights how to support adults with dysphagia to safely eat and drink.13
The guidance highlights the importance of eating and drinking with minimal distractions, allowing the person time to consume meals, sitting properly, the importance of oral hygiene and a modified diet.13
Dysphagia is a common condition in people with learning disabilities which is made complex due to co-occurring physical health issues, psychiatric, communicative, cognitive and behavioural issues.
These complications can be avoided, however, when the correct guidance and management in implemented. Speech and Language Therapists play a key role in advising families and carers about how to manage dysphagia, and their professional advice should always be sought if dysphagia is suspected.
While adverse events as a result of dysphagia appear to be declining, it is vital that these outcomes are closely monitored and good practice continues to be shared far and wide.
The 2022 LeDeR report is expected to be published in the coming months, and deaths as a result of dysphagia complications should be closely analysed.
If deaths due to dysphagia complications (such as aspiration) appear to be rising, a refreshed communication strategy should be created and spread amongst families and carers of people with learning disabilities to ensure they know how to manage the condition and reduce the risk of adverse events from occurring.
