5 things you might not know about dysphagia

The causes

This is why speech and language therapists and dietitians specialise in working with people who experience particular conditions. They provide the knowledge, skills and expertise needed specific to the needs of the person with dysphagia.

The act of swallowing requires a number of the body’s systems to work together. It involves the coordination of nerves, muscles, breathing/respiration and the digestive system. When there is a developmental or acquired difficulty in any of these systems, it can result in dysphagia.

For example, if an adult has a stroke, this means that the parts of the brain that control swallowing can be impaired. It is an acquired neurological condition. Some people cannot swallow without choking or aspirating shortly after a stroke. Many will improve with some spontaneous recovery, medical treatment and therapy. Between 40-78% of stroke survivors have dysphagia. 76% will continue to experience a moderate to severe dysphagia, and 15% a profound dysphagia.

Between 50-60% of head and neck cancer survivors have dysphagia. This might be because of the cancer itself, or as a result of surgery or radiation therapy. It is often worse initially and can improve.

People who have Chronic Obstructive Pulmonary Disease (COPD) may acquire dysphagia as it is difficult to coordinate breathing and swallowing and the disease can result in weakness and fatigue.

Dysphagia can also arise in people with Gastrooesophageal Reflux Disease (GORD), where the stomach contents can come back up the oesophagus and acid damages the oesophagus and throat. Around 28% of people with reflux may acquire dysphagia.

Children with cerebral palsy have a limited range of physical movement. They may find it difficult to bite, chew and swallow. The estimates for how many children with cerebral palsy have dysphagia ranges from 31 to 99%.

Infants born prematurely can also be affected. Between 27 to 40% of them could have dysphagia. This is because the body’s systems required for effective and safe swallow have not yet fully developed.

Dysphagia is not exclusive to the elderly

Dysphagia occurs across the whole age range from babies to the elderly. It is often thought of as an older person’s problem though. This is probably because it commonly occurs as a result of stroke and dementia and these conditions predominantly affect the elderly. It is also the result of frailty, another condition associated with being older.

Yet many people with dysphagia are younger.

For example, in one study of 407 patients with head and neck cancer, the average age was nearly 59 years old, and of them 45.9% had dysphagia. 59 is certainly not elderly these days!

The number of people with head injury needing hospitalisation in the UK occurs at the rate of around 275/100,000 population annually. There are peaks in age groups. One of those is the over 75s but the other is people aged 15 to 24. 25 to 78% of people with a brain injury will experience dysphagia and many of those will be young adults.

It also affects adults with learning disabilities. In another study, the average age of adults with a learning disability, who had needed a speech and language therapist to support them with dysphagia, was 40 years old.

Babies and children are also affected either as a result of developmental difficulties, or acquired disorders, disease and trauma.

Many of these younger people with dysphagia are at significant risk of malnutrition and require dietetic as well as speech and language therapy support.

The effects of dysphagia

Dysphagia can result in physical and psychological or social effects.

Physically, people may experience;

Psychologically and socially, people with dysphagia experience;

• Fear or anxiety when eating or drinking

• Avoiding the company of others due to embarrassment or worry when spilling, dribbling, coughing or choking

• Reduced motivation to eat and drink as it is too challenging or uncomfortable

• No longer enjoying food or drink

• Self-limiting or avoidance of particular foods or drinks

• Changes in routine and ability to take part in social events and integrate with others

• Low mood or depression

• Exacerbation of existing mental health difficulties resulting in challenging behaviours or self-neglect

The speech and language therapist and dietitian will work together with the person with dysphagia and/or their family or carers to ensure that they not only support them with their physical needs but also psychological and social.

Who can help – dietitians and speech and language therapists

Dietitians and speech and language therapists are allied health professionals. It is mandatory that they are registered with the Health and Care Professions Council (HCPC), and dietitians are also registered with the British Dietetic Association (BDA) and speech and language therapists with the Royal College of Speech and Language Therapists (RCSLT).

The letters RD mean ‘Registered Dietitian’ and MRCSLT mean ‘Member of the RCSLT’. You can have confidence that the person providing you with advice, support and therapy is an expert in their field.

Speech and language therapists and dietitians work together in hospitals, in rehabilitation units, outpatient services including home visits, and in private organisations. They may work for the NHS, be employed in private healthcare or be independent practitioners.

They often refer people with swallowing problems or malnutrition to each other.

The speech and language therapist’s role is to assess and manage swallow dysfunction. They recommend therapy exercises, strategies, manoeuvres, and compensatory measures such as the appropriate food and drink textures using the IDDSI Framework. They also provide education and training on how to support safer eating and drinking. If the person with dysphagia has a severe risk of choking or aspiration pneumonia, they could recommend ‘nil by mouth’ and seek alternative means of nutrition and hydration.

The role of the dietitian in dysphagia management is to ensure adequate nutrition and hydration. The dietitian assesses for the risk or existence of malnutrition, advise on nutritional support or supporting people requiring enteral feeding. They also work to help prevent skin breakdown or to support healing, as well as education for people with malnutrition and their family/carers, and prevention of weight loss and malnutrition. If a person has been advised to have thickened drinks, emphasis will be made on ensuring they don’t become dehydrated.

The speech and language therapist and dietitian may see a person with dysphagia jointly. If this isn’t practical, they will liaise with the multidisciplinary team or on a one to one. This provides the holistic care for the person with dysphagia that they deserve.

Joint working with the person with dysphagia and their family/carers, helps people to overcome acute illness but also to help with rehabilitation, and prevent future issues.