Dysphagia and eating, drinking and swallowing needs ​overview

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

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

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

 

Adults

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

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

 

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. 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
  • weight loss

It can also make taking medication more difficult and result in hospitals admissions. In the worst cases, dysphagia can result in death.

Many of these instances can be avoided if the dysphagia is treated timely and appropriately.

As well as 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 multidisciplinary to ensure safe and effective outcomes.

Prevalence statistics

Within the population in general, issues with eating drinking and swallowing occur in:

  • up to 100% of people with motor neurone disease (Panebianco et al., 2020)
  •  85% of people with dementia (Espinosa-Val, 2020)
  •  42% of people who have had a stroke (Banda et al., 2022)
  •  50% of people with Parkinson’s disease (Panebianco et al., 2020)
  • 31% of people with multiple sclerosis (Panebianco et al., 2020)
  • 8-17% of people with a learning disability (Public Health England, 2016)
  • 55% of people with head and neck cancer (Zebella et.al., 2021)
  • 79% of people at the end of their lives (Bogaardt et al. 2015)
  • up to 90% of people in Intensive Care Units (Macht et al., 2013)
  • up to 40% of infants born prematurely (Uhm et al., 2013)
  • up to 99% of children with cerebral palsy (Calis et. al., 2008; Mirrett et. al.,1994; Reilly et. al. 1996; Waterman et. al, 1992, Wright et.al.,1996)

The size of the problem amongst infants, children and young people

Infants, children and young people with neurodisability and those born prematurely are most likely to be at risk of dysphagia. However, 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, see our Giving Voice factsheet on supporting infants, children and young people with feeding and swallowing difficulties.

 

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
  • 48% of patients undergoing cervical discectomy and fusion
  • 33% of the people with multiple sclerosis
  • 27% of those with chronic obstructive pulmonary disease
  • 10% of acutely hospitalised older people
  • 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, see our Giving Voice factsheet about people with swallowing difficulties.

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

 

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 Giving Voice factsheet on people with swallowing difficulties.

RCSLT work on dysphagia

The RCSLT recognises that a system-wide approach is necessary to improve 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.

Read about our current dysphagia projects.

Eating, drinking and swallowing competency framework

The eating, drinking and swallowing competency framework (EDSCF) is an assessable competency framework. It is aimed at carers and other professionals working with people with dysphagia, rather than SLTs.

About the framework

It informs strategies for developing the skills, knowledge, confidence and ability of individuals to contribute more effectively in the identification of people with, and in the management of eating, drinking and swallowing difficulties (dysphagia).

It can be applied to all client groups and age groups in a variety of locations across the UK.

The framework provides an update to the Interprofessional Dysphagia Framework (IDF), first published in 2006. This update, funded by Health Education England, responds to the significant changes to the healthcare system with:

  • an increase in the number of referrals for dysphagia
  • SLTs moving to a more consultative role within the healthcare team
  • recognition that dysphagia is a significant corollary of other medical conditions, eg head and neck cancer and at the end of life.

This requires the wider healthcare team to develop expertise in the management of dysphagia, particularly as an individual’s difficulties may alter over a 24-hour period.

The framework has been developed by an iterative process of inter-collegiate consultation with dysphagia experts, the private and voluntary healthcare sectors, and the wider profession.

The updated framework seeks to:

  • provide the flexibility that meets the needs of different working environments, e.g. community, hospitals, schools, hospice and care homes, enabling individuals to apply guidance for managing stretched services
  • set out the knowledge and skills needed to screen, assess, support and refer for further assessment to support patients with eating, drinking and swallowing difficulties
  • define the levels of decision making to promote consistency in the approach to eating, drinking and swallowing management and thereby improve standards of care
  • offer direction to individual training establishments to identify what training would be appropriate for practitioners at each level.

This framework identifies six levels of decision making and identifies competencies that are requisite to each member of the team, acknowledging the role of the specialist carer who may have considerable knowledge regarding the individual with eating, drinking and swallowing difficulties. The levels include competencies specific to dysphagia that can be cross-referenced with those of the dysphagia competencies from Skills for Care and the Royal College of Speech and Language Therapists.

The RCSLT is grateful to our speech and language therapy experts (both lead and supporting authors) for their time and leadership informing the development of this framework: Dr Elizabeth Boaden; Dr Sue Pownall; Dr Hannah Crawford; Catherine Donnelly; Dr Alison Stroud; Tracy Lazenby-Paterson.

Download the framework

Download the full eating, drinking and swallowing competency framework (PDF)

You can also download each level separately:

EDSCF eLearning

Health Education England e-Learning for Healthcare (HEE e-LfH) has worked in partnership with Sheffield Teaching Hospitals NHS Foundation Trust, RCSLT and industry experts to develop the Dysphagia Guide e-learning resource for those working with people living with dysphagia.

The resource, which was co-developed with care home staff and is relevant to others in the health and care workforce, informal carers and people with dysphagia themselves.

It can be used to support people working in care to gain the relevant level of competency for their role as outlined in the eating, drinking and swallowing competency framework.

This resource is also a useful guide for managers in policy and workforce development.

The Dysphagia Guide eLearning resource, which has been adapted by HEE e-LfH, is made up of five sessions that cover the following topics:

  • essentials
  • food
  • quality and safety
  • training and resources
  • workforce

For more information about the elearning resource, including access details, visit the e-LfH website.

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 download our dysphagia factsheets:

You may also find the following content useful:

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.

To celebrate Swallowing Awareness Day RCSLT, Care Inspectorate Scotland and Scottish Care announced publication of jointly endorsed new guidance on supporting people with eating, drinking and swallowing difficulties in Scotland. Download the guidance (PDF). The guidance highlights:

  • good practice
  • helps inspectors identify signs where a care service’s practice can be better and support them to improve
  • support care providers to better understand and implement good quality care
For more information see Care Inspectorate on Twitter

Related topics

Key organisations

  • Banda K.J, Chu H,  Kang X.L, Doresses Liu,  Pien LC.,  Jen HJ.,  Hsiao ST. S. and Chou KR., (2022), ‘Prevalence of dysphagia and risk of pneumonia and mortality in acute stroke patients: a meta-analysis’ BMC Geriatr 22, pp 420. Available at: https://doi.org/10.1186/s12877-022-02960-5
  • Calis EAC, Veugelers R, Sheppard JJ, Tibboeli D, Evenhuis HM, Penning C., (2008), ‘Dysphagia in children with severe generalized cerebral palsy and intellectual disability’, Developmental Medicine and Child Neurology 50(8), pp 625-630
  • Espinosa-Val, M.C.; Martín-Martínez, A.; Graupera, M.; Arias, O.; Elvira, A.; Cabré, M.; Palomera, E.; Bolívar-Prados, M.; Clavé, P.; Ortega, O., (2020), ‘Prevalence, Risk Factors, and Complications of Oropharyngeal Dysphagia in Older Patients with Dementia’ Nutrients 2020, 12, 863. Available at:  https://doi.org/10.3390/nu12030863, (Accessed 29 February 2024)
  • Mirrett PL, Riski JE, Glascott J, Johnson V., (1994), ‘Videofluoroscopic assessment of dysphagia in children with severe spastic cerebral palsy’ Dysphagia 9(3), pp.174-179
  • Panebianco M, Marchese-Ragona R, Masiero S, Restivo DA.  (2020), ‘Dysphagia in neurological diseases: a literature review’ Neurol Sci. Nov;41(11):3067-3073. doi: 10.1007/s10072-020-04495-2, PMID: 32506360; PMCID: PMC7567719. (Accessed Epub 2020 Jun 7)
  • Public Health England (2016), People with learning disabilities in England 2015: Main report,  Available at : https://assets.publishing.service.gov.uk/media/5a81e329ed915d74e3400976/PWLDIE_2015_main_report_NB090517.pdf , (Accessed 29 Feb 2024).
  • Reilly S., Skuse D.H., Poblete X., (1996), ‘The prevalence of feeding problems and oral motor dysfunction in children with cerebral palsy: a community survey’  Journal of Paediatrics 129(6), pp. 877-882.
  • Waterman E.T., Koltai PJ., Downey JC., Cacace AT. (1992) ‘Swallowing disorders in a population of children with cerebral palsy’ International Journal of Pediatric Otorhinolaryngology 24(1), pp. 63-71.
  • Wright R.E.R., Wright F.R., Carson C.A. (1996). Videofluoroscopic assessment in children with severe cerebral palsy presenting with dysphagia. Pediatric Radiology 26(10), pp. 720-722.
  • Zebralla, V., Wichmann, G., Pirlich, M., Hammermüller C., Berger T., et al. Dysphagia, voice problems, and pain in head and neck cancer patients. Eur Arch Otorhinolaryngol 278, 3985–3994 (2021). Available at: https://doi.org/10.1007/s00405-020-06584-6
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