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Key points

  • Dysphagia describes eating, drinking and swallowing difficulties in infants, children and young people and adults
  • It often occurs with other health conditions, such as being born prematurely, having learning disabilities, dementia and stroke
  • It may also affect the person’s quality of life, as eating and drinking is important for social life
  • If not treated appropriately, dysphagia can lead to other health complications and in worst case can result in death
  • Speech and language therapists play a key role in the identification and management of dysphagia
 

 

What is dysphagia?

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Dysphagia describes eating, drinking and swallowing difficulties in infants, children and adults. People with dysphagia often have other health conditions that they are being treated for which affects their eating, drinking and swallowing abilities. 

Infants, children and young people

Dysphagia in infants, children and young people can be associated with a number of different conditions:

  • being born prematurely
  • neurological deficits, e.g. 
    • acquired traumatic brain injury
    • Rett syndrome
  • oncology/tumours
  • cerebral palsy
  • infectious diseases, e.g.
    • meningitis
  • neuromuscular disorders, e.g. 
    • muscular dystrophy
  • respiratory difficulties, e.g.
    • chronic lung disease,
  • cardiovascular disorders, e.g.
    • congenital heart disease
  • gastrointestinal difficulties, e.g.
    • gastro-oesophageal reflux
  • craniofacial conditions e.g.
    • cleft palate
    • Pierre Robin sequence
  • congenital syndromes, e.g.
    • Prader-Willi
    • Down’s syndrome
  • learning disability

In some combinations, children may experience dysphagia when transitioning into adulthood.

The size of the problem

Infants, children and young people with neurodisability and those born prematurely are most likely to be at risk of dysphagia, but feeding difficulties also occur in typically developing children. Recent research has found the incidence of feeding difficulties is:

  • between 25-45% in a typically developing paediatric population
  • between 31-99% for children with cerebral palsy
  • between 21-44% for children with general neurodevelopmental disabilities
  • between 26.8-40% of infants born prematurely
  • between 68-72% of children with acquired conditions during the acute phase of care.

For references to these statistics, please see our factsheet on Supporting infants, children and young people with feeding and swallowing difficulties.

Adults

Dysphagia in adults can occur as a result of any of the following medical problems:

  • neurological disorders, e.g. 
    • stroke
    • dementia
    • Parkinson’s Disease
    • motor neurone disease
    • multiple sclerosis
    • progressive supranuclear palsy
    • Guillain-Barré syndrome
    • brain tumour
    • subarachnoid haemorrhage
    • Wilson’s disease
    • Polyneuropathy
    • head injury
  • head and neck cancer, e.g. 
    • laryngeal cancer
  • oncology, e.g. 
    • lung cancer
  • cardiopulmonary disorders, e.g. 
    • chronic obstructive pulmonary disease
  • autoimmune disorders, e.g. 
    • HIV
    • lupus
    • rheumatoid arthritis
  • connective tissue disorders, e.g. 
    • scleroderma
  • general medical disorders, e.g. 
    • UTI
  • disorders associated with the elderly, e.g. 
    • cervical osteophytes
  • disorders caused by trauma, e.g. 
    • smoke inhalation
  • vascular disorders, e.g. 
    • Bechet’s disease
  • swallow disorders as a result of surgery, e.g. 
    • base of skull surgery
    • thyroid surgery
  • tracheostomy
    • ventilator dependent individuals, e.g. 
    • post-extubation related dysphagia
  • drug related causes, e.g. 
    • long-term use of some anti-psychotic medications.; 
  • psychogenic causes

The size of the problem

As dysphagia often happens at the same time as other health conditions, it is difficult to be certain of the prevalence rate. However, research has found the following rates of prevalence and incidence of dysphagia is:

  • Between 50-75% of nursing home residents
  • Between 50-60% of head and neck cancer survivors
  • Between 40-78% of stroke survivors – of those with initial dysphagia following stroke, 76% will remain with a moderate to severe dysphagia and 15% with profound dysphagia
  • In 48% of patients undergoing cervical discectomy and fusion
  • In 33% of the people with multiple sclerosis
  • In 27% of those with chronic obstructive pulmonary disease
  • In 10% of acutely hospitalised older people
  • In 5% of adults with a learning disability, 5% of community-based individuals with learning disabilities and 36% of hospital-based individuals.

For references to these statistics, please see our factsheet on Giving voice to people with swallowing difficulties.

Elderly people may experience difficulty eating, drinking and swallowing due to the loss of muscle mass and strength, which is a normal part of the ageing process. This is called sarcopenia and is separate from dysphagia. However, the treatment of it may be similar. 

Can dysphagia be treated?

Treating dysphagia depends on what underlying condition or conditions a person may have. Some people experience dysphagia for only a short period of time, whereas others might have it for a longer period of time.

If dysphagia is not treated appropriately, it can result in choking, pneumonia, chest infections, dehydration, malnutrition and weight loss. It can also make taking medication more difficult and result in hospitals admissions. In the worst cases, dysphagia can result in death. However, many of these instances can be avoided if the dysphagia is treated timely and appropriately.

As well as resulting in medical complications, dysphagia can also lead to a poorer quality of life for the individual and their family. This may be due to embarrassment and lack of enjoyment of food, which can have profound social consequences.

It is important that the treatment of dysphagia is multi-disciplinary to ensure safe and effective outcomes.

Role of speech and language therapy in dysphagia

Speech and language therapists support infants, children and adults who have dysphagia to eat, drink and swallow safely.

They:

  • Play a key role in the diagnosis of dysphagia
  • Help people regain their swallowing through exercises, techniques and positioning 
  • Promote patient safety through modifying the texture of food and fluids, reducing the risk of malnutrition, dehydration and choking
  • Promote quality of life, taking into account an individual’s and their families’ preferences and beliefs, and helping them adjust to living with swallowing difficulties
  • Work with other healthcare staff, particularly dietitians, to optimise nutrition and hydration
  • Educate and train others in identifying, assessing and managing dysphagia, including families and the wider health and care workforce.

Impact of speech and language therapy

Early identification and management of dysphagia by speech and language therapists improves quality of life, and reduces the possibility of further medical complications and death. Improved nutrition and hydration have an impact on physical and mental wellbeing.

In addition, speech and language therapy for those with dysphagia also produces economic benefits and savings for the wider health economy, including through avoided hospital admissions.

Economic impact research has shown that every £1 invested in low intensity speech and language therapy for adult stroke survivors with swallowing problems generates £2.30 in healthcare savings through avoided cases of chest infections.

15% of hospital admissions of people with dementia with dysphagia could be prevented by contributions from a speech and language therapist at an earlier point.

For references to these statistics, please see our factsheet on Giving voice to people with swallowing difficulties.

RCSLT work on dysphagia 

The RCSLT recognises that a system-wide approach is necessary to improve the management of dysphagia as well as the quality of life and outcomes for people living with dysphagia.

The RCSLT therefore works with key partners to ensure the wider health and care system has the appropriate guidance and resources to upskill the workforce to meet the current demand of dysphagia management.

We also work to ensure that the speech and language therapy profession working with dysphagia receives adequate support to continue their key role in dysphagia management.

Please see the current projects page to see a list of our current dysphagia projects.

International Dysphagia Diet Standardisation Initiative (IDDSI) Framework 

About the Framework

The International Dysphagia Diet Standardisation Initiative (IDDSI) have published international standardised terminology and definitions for texture modified foods and thickened liquids for people with dysphagia. 

The framework consists of a continuum of eight levels (0-7) and includes descriptors, testing methods and evidence for both liquid thickness and food texture levels.

For more information about the initiative and the framework, please visit IDDSI’s website.

RCSLT involvement

The RCSLT was part of a UK Expert Reference Group which was initially set up by NHS England in 2015. Subsequently the chairmanship of the group was transferred to the RCSLT and the British Dietetic Association (BDA). The group comprised of: RCSLT, BDA, HCA, NACC, BSNA, manufacturers of thickening agents and products designed specifically for people with dysphagia and manufacturers of modified texture pre-prepared meals.

The group spent over a year gathering evidence to determine whether or not to adopt the IDDSI Framework. This work included literature reviews, pilots, a pros and cons exercise and surveys of healthcare professionals. The RCSLT and the BDA consulted with expert advisors and their members through surveys disseminated via member networks. The results of these surveys informed the decision by both organisations to adopt IDDSI in October 2017. The RCSLT and the BDA provided updates via their professional magazines to members on this work.

The UK Expert Reference Group agreed to a phased implementation plan which commenced in April 2018 with full implementation by April 2019.

The UK Expert Reference Group has now ceased to exist.

The RCSLT continues to be involved in IDDSI developments and escalate member concerns to relevant stakeholders.

Keep up-to-date with the latest developments of IDDSI.

Sign up to IDDSI’s monthly e-bites to receive the latest information on IDDSI.

Please contact us if you have any other questions.  

Resources

For more information read our Dysphagia factsheets

Inter-professional Dysphagia Framework (IDF) 

The Interprofessional Dysphagia Framework (IDF) is an assessable competency framework. It was developed in partnership with other professions to clearly set out the competencies and knowledge required by healthcare professionals and staff working in dysphagia management in different professional settings across the UK.

Videos

Edna’s story - the impact of speech and language therapy

Benefits of FEES (National tracheostomy safety project)

Giving Voice - Communication & Swallowing in the Hospital

 

Giving Voice - Communication & Swallowing in Mental Health

 

Giving Voice - Communication & Swallowing in the Community

 

Adult Speech and Language Therapy at Darent Valley Hospital, Kent, UK

 

 

For more videos visit the RCSLT YouTube channel.

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Key organisations