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This publication is available at https://www.gov.uk/government/publications/reasonable-adjustments-for-people-with-learning-disabilities/swallowing-difficulties-dysphagia
1. Dysphagia or swallowing difficulties
Dysphagia is the medical term for swallowing problems. There are different causes and types of dysphagia. Some people have difficulty swallowing specific types of food or liquids. Some people cannot swallow at all. Difficulties in any of the main stages of the eating, drinking and swallowing process can be called dysphagia.
There are no reliable data on the prevalence of dysphagia in people with learning disabilities. Historically, estimates have ranged from 36% (based on speech and language therapy caseloads) to over 70% (based on inpatient populations). More recent studies have shown that about 15% of adults with learning disabilities require support with eating and drinking and 8% of those known to learning disability services will have dysphagia. This figure is likely to be an underestimate, as we know the signs of dysphagia (particularly when it is mild) are often missed. Therefore, not everybody with swallowing problems will be referred appropriately.
It is generally accepted that people with learning disabilities are more likely to have dysphagia than other people. As far back as 2004, the National Patient Safety Agency (NPSA) identified it as a significant health risk for people with learning disabilities. Dysphagia can result in choking and may lead to death. A multi-agency review in Hampshire was commissioned following 5 cases of choking resulting in death. This review noted the difficulty in obtaining national figures for premature deaths of people with learning disabilities caused by choking and concluded that there is a lack of understanding of the issue. Research analysing both locally and nationally reported choking incidents concluded that many choking incidents in people with learning disabilities are being missed, leading to an underestimate of choking episodes.
The Mazars report into the deaths of people with learning disabilities in an NHS trust highlighted particular concerns around dysphagia assessments and the management of eating and drinking difficulties.The report made a number of recommendations, including the need to investigate the quality, timing and follow-up of dysphagia assessments.
Swallowing problems can result in people breathing in food or drink, which can then lead to aspiration pneumonia. Figures show that 40% of people with learning disabilities and dysphagia experience recurrent respiratory tract infections. The confidential inquiry into premature deaths of people with learning disabilities (CIPOLD) identified aspiration pneumonia as a significant cause of death.
Analysis of information from death certificates has shown that people with learning disabilities are much more likely to die of the consequences of solids or liquids in their lungs or windpipe than those in the general population. The analysts concluded that this is a common, possibly preventable cause of death.
Dysphagia has been linked to avoidable hospital admissions such as dehydration and constipation, as well as aspiration pneumonia. In addition to the significant health risks posed by dysphagia, there is also a huge impact on quality of life for individuals. Eating and drinking are fundamental aspects of people’s lives. Dysphagia may prevent people from being able to enjoy the taste and textures of food they like, as well as the social aspect of shared meals. Modified meals and eating and drinking apparatus can make people feel different and excluded at mealtimes. In some cases dysphagia can contribute to malnutrition.
Therefore, successful management of dysphagia has the potential to improve physical health, psychological wellbeing and to reduce hospital admissions. Despite this, there has been a lack of clinical guidance around dysphagia in people with learning disabilities. To address this, a multidisciplinary group of clinicians worked together to draw up the Guideline for the Identification and Management of Swallowing Difficulties in Adults with Learning Disability. This resource provides information about the recognition, diagnosis and management of dysphagia in adults with learning disabilities.
2. Assessment of dysphagia
There are two main types of dysphagia. One is caused by problems with the mouth or throat and occurs when a person has difficulty moving the food or fluid to the back of the mouth and starting the swallowing process (oropharyngeal). The other is related to problems with foods or liquids passing from the top of the oesophagus and into the stomach (oesophageal dysphagia). They can occur together but as they have different causes and different symptoms most clinicians will consider them separately. There are four stages of swallowing and any (or all) of these can be affected by dysphagia. It is important to pinpoint which phase of the swallow is impaired in order to assess risk and plan the most suitable intervention.
Since many adults with learning disabilities who have dysphagia will have limited verbal communication it is important that their family carers or paid supporters are asked about their symptoms when eating and drinking. It is also likely that a speech and language therapist or a nurse will observe the person during a meal. A detailed referral pathway can be found in the Guideline for the Identification and Management of Swallowing Difficulties in Adults with Learning Disability.
The Screening Tool of Feeding Problems (STEP) was developed to identify eating and drinking problems in people with learning disabilities. It is based on an interview with someone who knows the individual well and includes items such as feeding skill deficits and food refusal. The Dysphagia Disorders Survey (DDS) is another measure of feeding and swallowing disorder in people with learning disabilities. This involves mealtime observation and is administered by a certified professional.
The more formal types of tests that may be used to diagnose dysphagia include:
- bedside swallowing assessment
- videofluoroscopy/modified barium swallow
- fibreoptic endoscopic evaluation of swallowing (FEES) or nasendoscopy
- diagnostic gastroscopy
Further information about these assessments can be found at on the NHS website
It is also important to consider the need for nutritional assessment of someone who has problems with eating and drinking. This might be a formal assessment by a dietitian or it might include weighing someone, taking blood tests or the use of an assessment such as the Malnutrition Universal Screening Tool (MUST).
3. Management of dysphagia
Appropriate management of dysphagia can improve patient care and has the potential to reduce associated healthcare costs. Supporting people with dysphagia has become a growing proportion of the clinical work of speech and language therapists (SaLTs). A multidisciplinary approach is often taken to the management of dysphagia and may include input from dieticians, physiotherapists and nurses.
The Inter-professional Dysphagia Framework provides guidance around the skills, knowledge and abilities needed in identifying and managing feeding/swallowing difficulties. It stresses a holistic approach to the assessment and management of dysphagia and highlights issues beyond a physical assessment of the swallow such as:
- levels of alertness
- behavioural issues
- psychological issues
- cultural issues
This framework also emphasises the importance of the role of the specialist carer who may have considerable knowledge about the individual’s swallowing difficulties.
The NPSA produced a guide which identifies the factors that increase the risk of negative health consequences arising from a person’s dysphagia.
These include factors, such as:
- level of learning disability/cognitive function
- fatigue and seizure activity
- behavioural difficulties
- unmanaged pain and staffing levels
Each factor can affect the individual’s risk of problems such as choking, aspiration, dehydration and malnutrition and should be considered in a management plan.
The type of treatment will depend on the cause and type of dysphagia. The most common interventions are described here.
3.1 Eating and drinking guidance
SaLTs will assess the swallow of an individual in order to ascertain the most suitable food texture for them. Modification of the consistency of food and liquid is one of the most common interventions and can reduce the risk of choking and aspiration. There are nationally recognised descriptors for texture modification which are used by dieticians and SaLTs.
Some people will require a soft textured or a puréed diet. Individuals will have specific requirements dependent upon their swallowing problems. It is essential that expert advice is sought in order to ensure the food is an appropriate texture. Some people with dysphagia struggle to drink liquids safely and they may need these to be thickened. It is important to monitor the intake of food and drink in order to guarantee that the person’s nutritional needs are being met and that they are sufficiently hydrated.
Eating and drinking guidance should address the use of specialist equipment. This might include adapted spoons, plates and cups. Such equipment can help people to feed themselves independently. It is paramount that any equipment needed by an individual is available to them in all the environments in which they eat and drink. Guidance may also include advice on appropriate pacing which may be crucial in the prevention of aspiration for an individual. Research suggests that pacing, as a strategy, is the most difficult for non-family members to comply with.
Eating and drinking guidance needs to be accompanied by appropriate training for all family carers or support staff. Supporters do not always follow eating and drinking guidelines. Evidence suggests that they are better at sticking to tangible guidance, such as using specialist equipment and altering the food texture. Supporters are less good at remembering guidance about pacing, prompting and social interaction during meals. Guidance should be as short and simple as possible and training should include opportunities to modify food/drink textures. It is essential the training and guidance are clear about the reasons for modifications to the food. There is a better chance of compliance if people understand the reasoning behind the guidance. It has also been shown that it is important that there are regular refresher sessions for supporters.
3.2 Swallowing therapy and re-education
Guidance emphasises the benefits of encouraging individuals to be as independent as possible when eating and drinking. This can help them to control the speed and the pace at which they eat. Hand-over-hand prompting involves physical guidance with utensils and this can help prepare the individual for the next swallow.
3.3 Postural care
Posture is an important factor to consider. Poor posture can negatively affect breathing and swallowing. Careful positioning can help with swallowing and can decrease the risk of aspiration and choking.
3.4 Modifying the environment
There should be minimal distractions when someone who has difficulties in swallowing is eating. Modifying the environment will involve consideration of how the individual is positioned in the room in relation to noise, heat and light. Such issues should be addressed in a management plan for eating and drinking.
Medication particularly antipsychotic medication can contribute to, or even be the main cause of, dysphagia and therefore a medication review is an important aspect of dysphagia management. A structured review process can help to ensure the quality of a medication review. Guidance recommends the NO TEARS tool which considers the need for the medication as well as monitoring and adverse events.
People with dysphagia may struggle to swallow tablets and need some adjustments to ensure they are taking their prescribed medication. This might involve swapping to a liquid or an alternative administration method such as suppositories or patches. Some tablets can simply be crushed but it is necessary to consider the impact of this upon taste. More importantly, this can affect the timing of the release into the body and some medications such as alendronic acid are contraindicated for chewing or crushing. It is essential there is clear guidance about medication and this should be written into a care plan. There are guidelines about the best practice in the medication management of adults with swallowing difficulties.
3.6 Alternative feeding methods
For some people, their swallowing difficulties are so severe that it may be concluded oral feeding is unsafe or not providing sufficient nutrition. In these cases, a percutaneous endoscopic gastrostomy (PEG) may be necessary. If someone has to receive medication via a PEG this must be assessed by a suitable clinician. Some people with a PEG will continue to have small amounts of food orally. There’s limited evidence around decisions about pleasure feeding and it can be a difficult balance between the risks and benefits.
4. Consent and capacity
Consent must be sought before any investigation or treatment. The Mental Capacity Act 2005 applies to individuals aged 16 and over and sets out the law regarding capacity and consent. It is underpinned by five key principles which must be considered when assessing capacity:
- a person must be assumed to have capacity unless it has been clearly established that they lack capacity regarding the specific decision under consideration at that point in time
- a person is not to be treated as unable to make a decision unless all practicable steps to help him/her to do so have been taken without success
- a person is not to be treated as unable to make a decision merely because he/she makes what is considered to be an unwise decision
- an act was done, or decision made, under the Mental Capacity Act for or on behalf of a person who lacks capacity must be done, or made, in his/her best interests
- before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action
It’s important to remember that capacity can fluctuate with time and an individual may lack capacity for a decision at one point in time, but be able to make the same decision at a later time. If an individual is judged to lack the capacity to make a decision then the decision should be made for them in their best interests. The Mental Capacity Act Code of Practice contains guidance on this process and emphasises the need to encourage participation. The individual should be supported to be as involved as possible in the decision and their feelings and beliefs should be taken into consideration.
5. Further resources
5.1 Guidance about the management of dysphagia
- Adults with learning disabilities (ALD): Position Paper this paper dentifies the role of SaLTs in adult learning disability services across the UK. It presents a tiered model for speech and language therapy service delivery in adult learning disability services with expected outcomes and risks identified for each tier
- Guidelines for the Identification and Management of Swallowing Difficulties in Adults with Learning Disability provides information that professionals need to recognise, diagnose and manage dysphagia. It addresses issues such as medication, care planning and capacity to consent
- Guideline on the medication management of adults with swallowing difficulties provides guidance on the best practice in medication management for those with swallowing difficulties. It is not specific to adults with learning disabilities but it provides a thorough overview of the issues and includes an algorithm for the medication management of adults with swallowing difficulties
- Reducing the risk of choking for people with a learning disability aimed at commissioners or providers of services for people with learning disabilities. It suggests simple strategies that providers can use to identify individuals at risk of choking and to ensure their staff are trained to address these risks
- Dysphagia in the Social Care and Healthcare Sectors are descriptors that detail the types and textures of foods needed by individuals with dysphagia. The descriptors provide standard terminology to be used by all health professionals and food providers when communicating about an individual’s requirements for a texture modified diet
- Eating well: children and adults with learning disabilities. Nutritional and practical guidelines is an evidence-based report summarising available information on the nutritional needs of children, young people and adults with learning disabilities. It looks at issues around food choice and eating well, and provides practical information. This includes recognising and managing swallowing difficulties, modifying food textures and managing the physical environment
5.2 Resources for professionals/family members and carers:
- Problems Swallowing? Resources for healthcare staff outlines the issues facing adults with learning disabilities who have dysphagia and includes support materials that can provide practical help for these people
- Oral health care advice for carers: Individuals with swallowing problems is a leaflet designed for family carers, residential and nursing staff who support individuals with learning disabilities and/or mental health issues who have problems with chewing and swallowing or who are fed by tube
- Dysphagia and Oral Health makes recommendations to help inform and support the dental team when providing oral health care for children and adults who have dysphagia. It is based on published research and guidance, and on expert advice and best practice
- Mouth care for children with swallowing problems
- Advice To Support Mouth Care For Adults With Swallowing Problems
- NHS Choices provides an overview of dysphagia, including information on causes, diagnosis, treatment and complications
- Swallowing difficulties website is designed to provide an easy to use and up-to-date source of information for prescribing and administering medicines to patients with dysphagia, the availability of alternative formulations and guidance on the appropriateness of tablet crushing and dispersion
- Looking after the mouth three videos provide practical advice and information for health and care professionals who perform mouth care. They can be used on a personal basis or for staff training
- In my best interests - Michael’s story is a 30-minute film about when the MCA was used to take a best interest decision about whether or not Michael should have a PEG
- Eating and drinking risk assessment is a single page risk assessment tool with space for recommendations pertaining to each identified risk
- Communicating at meals is a short, accessible booklet with top tips about supporting someone at mealtimes and drink times. This includes advice on involving the person and giving them choices
- Supporting people who eat or drink too fast is a leaflet with advice on supporting people to swallow safely and not cough or choke
- Supporting people with enteral feeding has some top tips to consider when supporting a person who is being tube fed
- Foods with a higher risk of choking lists foods that should be avoided for people with swallowing difficulties
- Tips to help eating and drinking for someone with dementia
- Working together on pacing when eating is a tool is to help the person or family/carers and the health worker to write an effective plan to manage rushing
- Help stop choking is a website to increase awareness of choking, promote safe eating strategies and reduce avoidable mortality and adverse harm effects from choking. There are video clips, advice leaflets, posters and forms to download and use.
5.3 Easy read resources:
- Dysphagia describes what dysphagia is. It also covers the warning signs and what to do about it
- Me at Mealtimes was designed to help make eating more enjoyable and fun for those who find mealtimes difficult. The book encourages people to score their mealtimes using the Me at Mealtimes scorecard and provides advice on who to contact for help with eating, drinking or swallowing problems. This resource comes with a Scorecard that has 14 questions about how someone feels when eating and drinking
- NHS Inform Easy-read web pages with information about the causes and signs of dysphagia. There is also information about what you should and should not do
- About Tube Feeding answers common questions about tube feeding
- Food Choices Booklet was developed for an individual who needed some additional support to understand foods that are/are not safe to eat
- Video Fluoroscopy explains what a video fluoroscopy is. There is also a consent form as part of this.
5.4 Smartphone apps related to dysphagia:
- SmallTalk Dysphagia provides a vocabulary of pictures and icons that talk in a natural human voice
- SmallTalk Oral Motor Exercises is for people with weak mouth, tongue, and lip muscles and/or poor oral coordination. It contains videos illustrating cheek, tongue, palate, lip, and jaw exercises that help strengthen the oral musculature
- St John Ambulance First Aid is the latest first aid advice and protocols for dealing with emergency situations. It is simple to follow with illustrated guides and voiced instructions. Choking and resuscitation are two of the emergency situations covered