Dysphagia
Dysphagia is the term used to describe eating and drinking disorders which may include difficulties in dealing with food or drink in the mouth, difficulties with movements of the mouth such as sucking and chewing that prepare food for swallowing, as well as the process of swallowing itself.83The
prevalence of dysphagia among people with learning disabilities is unknown but it is likely that estimates of dysphagia in the community of 5%-8%, based on dysphagia referrals, are likely to be under-estimates.84
Dysphagia is more common among adults with learning disabilities who have a physical disability such as cerebral palsy, those who have physical disability of the palate, teeth or tongue, and those with the greatest health needs.84
Dysphagia can lead to aspiration of food or fluid into the lungs, which causes coughing and gagging and which can also cause choking and death through asphyxiation.85
Aspiration is also related to respiratory tract infections and pneumonia, which are a leading cause of death among people with learning disabilities.14
It is frequently
acknowledged that dysphagia – despite its potential life- threatening implications for people with learning disabilities in terms of undernutrition and dehydration as well as choking and aspiration – is frequently under-diagnosed and poorly managed.86
For information on how to recognise and support swallowing difficulties, see page 74.
Information on how to modify the consistency of solids and liquids and manage the physical environment to support those with swallowing difficulties can be found on pages 133 and 112.
Dyspepsia (indigestion)
This is very common in children with complex neurological difficulties and common in adults with similar difficulties.87
There are three types of dyspepsia: gastro-oesophageal reflux disease (GORD); functional (dysmotility) dyspepsia; and structural (organic) dyspepsia.
Gastro-oesophageal reflux disease (GORD)
GORD is a major clinical problem in people with learning
disabilities and is frequently overlooked and under- estimated.88It has been estimated to occur in 48% of
people with learning disabilities,14but to occur more
frequently among those with cerebral palsy, severe learning disabilities, those taking anti-epileptic drugs and those with a history of rumination (see the next page).88It has also
been reported to occur in up to 75% of neurologically impaired children.89Factors which increase the risk of GORD
include cerebral palsy, use of anti-convulsant drugs, drugs which slow gastric emptying, benzodiazepines, and having an IQ less than 35. 38GORD is caused by acid from the
stomach entering the oeosophagus, causing pain and symptoms including heartburn, painful swallowing,
vomiting, vomiting blood and regurgitation and re-chewing of food. The very severe pain that can be caused by GORD can lead to challenging behaviour, particularly among individuals with learning disabilities who are unable to express themselves. If the symptoms go unnoticed or unreported and the condition untreated, the oeosophagus can be permanently damaged and oesophageal cancer can develop.38GORD is a highly treatable condition, so it is
essential that it is recognised and treated, as it would be for the rest of the population.
Functional (dysmotility) dyspepsia
This is due to abnormal movement of the stomach or oesophagus. Symptoms may include a poorly emptying stomach (which can be seen in the person as fullness, refusal to eat, abdominal pain, or effortless large-volume vomiting). Treatment is either to change or stop any drugs causing the abnormal movements, or to use drugs that encourage normal movements.
Structural (organic) dyspepsia
This is dyspepsia caused by damage to the lining of the stomach or duodenum, such as a gastric ulcer. The commonest cause is infection by the helicobacter pylori bacteria. People living in close proximity to each other are particularly prone to this – such as people living in a community home. An equally common cause is the use of non-steroidal anti-inflammatory drugs (NSAIDs) such as aspirin, ibuprofen and diclofenac. This type of dyspepsia is treated by treating the cause of the damage. The
symptoms of ulceration may be mild, or masked by communication difficulties. An untreated ulcer can perforate and result in death, so early diagnosis is crucial. Pica
Pica is the term used for eating non-food items such as plaster, coal, faeces, soil or cigarette ash. Pica, which is not normally seen in the general population (except
occasionally among pregnant women and children aged 1-6 years90), has been associated with severe learning
disabilities, schizophrenia, depression, large group living, younger age and male gender, autism, dehydration, and swallowing difficulties.71, 72 It has been reported among
between 9% and 25% of people in residential care and between 0.3% and 14% of people with learning disabilities living in the community.91Eating non-food items can
prevent the absorption of vital nutrients, cause lead or nicotine toxicity, block the colon, or produce medical problems if the ingested item is toxic or harmful.91There
has been debate as to whether pica may be associated with mineral deficiencies and there is some evidence that pica is more common among those with low iron and zinc status,92but whether this is the cause of pica or a
consequence of the pica itself has not been established. Strategies for dealing with problem eating behaviours among people with pica are considered on page 111. Polydipsia
Polydipsia is the excessive drinking of non-alcoholic drinks in the absence of the physiological stimulus to drink or a physiological condition such as diabetes. Acute excessive fluid consumption (which has been defined as more than 5 litres of fluid a day) can result in restlessness, confusion, lethargy, nausea, diarrhoea, vomiting, convulsions, seizures, coma and even death.93Chronic polydipsia may result in
long-term physical complications such as incontinence, renal failure, cardiac failure and dementia. This disorder has been noted in particular among schizophrenics and those with autism and pica, and a prevalence rate of 14.5% has been suggested among those with learning disabilities.93
There are likely to be behavioural aspects to polydipsia: it has been suggested that excessive drinking of fluid might be associated with agitation, stress or pre-menstrual stress, or might be a reaction to conditions such as toothache or constipation. Polydipsia may also be linked to lifestyle factors such as smoking or experience of limited availability of fluids, or to the side effects of some medication, but more research is needed to explore the factors which may contribute to this condition.
Hyperphagia
Hyperphagia, also known as polyphagia, is an abnormally increased or excessive appetite which is insatiable. The person is continually seeking food, often to the point of gastric pain or vomiting. It is often linked to damage to the hypothalamus. This condition is frequently seen in people with Prader-Willi syndrome55and can lead to excessive
weight gain. Rumination
Rumination involves the continuous regurgitation, re- chewing and sometimes re-swallowing of food. It has been
associated with hiatus hernia, infections of the gastrointestinal system or congenital abnormalities.94
Drooling
The escape of saliva from the mouth as drooling can result from problems with the facial and palate muscles. It is possible that the main causes are inadequate swallowing and lip closure and head-forward posture. Drooling can cause chronic irritation of the facial skin, infections around the mouth area, halitosis (bad breath), and dehydration due to fluid loss, and can be undignified and unpleasant. Many management techniques – surgical, non-surgical and pharmacological – have been used, but none appear to be universally successful, and many of the drugs have
problematic side effects. Management is mainly aimed at alleviating the symptoms and maintaining the head in an upright position.95Some strategies to support those who
have difficulties with drooling are outlined on page 110. Bruxism
Bruxism, or the grinding of teeth, can lead to tooth wear and in severe cases can lead to tooth pain, infections and oral wounds when it is also associated with cheek chewing. Bruxism has been reported among people with learning disabilities, particularly among people with cerebral palsy where it is suggested it may be linked to anxiety and communication problems.96Bruxism is also associated with
Rett syndrome and Down’s syndrome as well as gastro- oesophageal reflux and to the long-term use of some drugs including some given for treating depression or behavioural problems.97Teeth-grinding requires careful individual
assessment to prevent damage to the teeth and oral tissues and to treat any pain which might interfere with eating and drinking.
Other difficulties associated with eating among people with learning disabilities
Regurgitation, vomiting, binge eating, selective eating and spitting out of food are all difficulties that have been associated with those with learning disabilities, and without treatment may cause dehydration, electrolyte imbalance, malnutrition and possibly increased mortality.71
Strategies to support those who have difficulties with eating and
drinking can be found on page 108. Asphyxiation and choking
In long-stay hospital wards it used to be common for people to eat their food very quickly in an attempt to ensure no-one else ate it, especially if they were often hungry and had no access to snacks. Some people with learning disabilities in residential care still have this behaviour and it has been linked to increased risk of
asphyxiation and choking.85Risk of choking can also be
associated with bolting food – for example, in people who take food from someone else’s plate and bolt it to avoid detection.98For information on how to handle choking
incidents see page 75, and for strategies to deal with problem eating behaviours see page 108.
Posture and mobility
There are high rates of mobility difficulties among people with learning disabilities that increase with age and which contribute to nutritionally-related ill-health such as chronic constipation, gastro-oesophageal reflux disease and osteoporosis.14People may also have postural difficulties
and be unable to sit up straight or hold their head up, making eating and drinking more difficult. For advice on positioning for eating and drinking, see page 107. Sensory disabilities
An individual with learning disabilities is very likely to have difficulties with communication. It is estimated that about 40% of people with learning disabilities have a hearing impairment99and an association between people with
Down’s syndrome and hearing impairment has been well established.100However, it can be difficult to diagnose and
recognise hearing problems among people with learning disabilities and this is particularly true for age-related hearing loss. Older people with learning disabilities and hearing loss may appear difficult and uncooperative and exhibit challenging behaviour, or they may be
misdiagnosed with dementia, so careful, regular and patient assessment of hearing ability is essential.101
Among adults with learning disabilities, almost 50% have some degree of visual impairment either at near or long distance, and 1%-5% have severe impairment or blindness.102
There will also be age-related deterioration of vision. People with Down’s syndrome have a higher prevalence of sight problems than other people with learning disabilities. People who cannot see well are likely to find tasks of daily living more challenging. They may find it harder to prepare food, may not see if food is unfit to eat, or may be unable to read food labels, or cooking and preparation instructions. It is important to ensure that people with learning disabilities have their sight tested regularly, that corrective glasses are available and that these are worn.