Huntington’s disease is a brain disorder that can affect various functions, including the ability to swallow — particularly as the disease progresses.

Huntington’s disease is a neurogenerative disorder that causes a breakdown of nerve cells within the brain. As nerve cells controlling different functions are lost, people with Huntington’s disease may experience a wide range of symptoms related to movement, balance, and cognitive function.

Dysphagia (difficulty swallowing) is a common symptom of Huntington’s disease. Some estimates suggest it can affect upward of 90% of people with advanced disease. Dysphagia is a progressive symptom that typically worsens or becomes more prominent as the disease progresses. Eventually, it can lead to other serious health concerns.

This article examines why people with Huntington’s disease develop swallowing problems, what effects they can have on a person’s health and well-being, and which strategies can help manage dysphagia.

In Huntington’s disease, nerves within the brain are slowly destroyed. As nerves affecting muscle control are affected, this can lead to various symptoms related to loss of motor function and control of movement.

When the nerves controlling the oropharyngeal (throat) or esophageal muscles are affected, it can lead to problems with swallowing. The muscles do not respond as they should because the nerve cells controlling them are either injured or gone, leading to the discoordination of the swallowing process.

Different challenges related to swallowing may develop over the course of the disease as symptoms worsen. Some of these may not be noticeable right away if they are mild, and some people may adapt without realizing what they are experiencing is a symptom of Huntington’s disease.

Difficulty swallowing can cause gagging or coughing while eating, which may be some of the most easily recognizable symptoms of dysphagia. Some symptoms may be less easily recognized.

Individuals with Huntington’s disease have reported symptoms such as:

  • dry mouth
  • excessive salivation or drooling
  • increased appetite often due to reduced food intake)
  • reduced appetite, potentially due to complications of swallowing
  • requiring longer times for meals
  • involuntary movement of the neck, body, or arms when swallowing
  • over- or under-active gag reflex
  • impulsive, rapid eating
  • inability to completely close lips, which can lead to food falling out of the mouth
  • excessive chewing
  • belching, reflux, or vomiting while eating

A variety of other effects can develop that a person may not notice. For example, the function of gastrointestinal structures that control the flow of food into and out of the esophagus may also be impaired. This may cause food to move more slowly through the digestive tract.

Swallowing problems in people with Huntington’s disease can progress from bothersome to serious as the disease progresses. Difficulties with swallowing can cause some people to eat less, which can contribute to weight loss and may eventually lead to malnutrition.

Loss of coordination of swallowing can also lead to choking, particularly if individuals are eating too quickly or not chewing enough. Choking itself is serious, but it can also lead to significant stress. A 2022 study found that up to 59% of people with Huntington’s disease and 78% of caregivers reported fear of choking, which may also contribute to anxiety around eating.

Dysphagia can also affect the muscles that block the trachea in the throat while swallowing. This means food or liquids may pass into the airways rather than the esophagus. This is known as aspiration.

When these materials get into the lungs, it can cause an infection and lead to aspiration pneumonia. Aspiration pneumonia is a serious concern in people with Huntington’s disease. It represents the leading cause of death in this population: Older research suggests that up to 87% of people with Huntington’s disease die from aspiration pneumonia.

Management of dysphagia in people with Huntington’s disease can be complicated.

Many of the medications to help manage Huntington’s disease symptoms, such as antipsychotic medications and tetrabenazine, can also lead to dysphagia. If someone is experiencing dysphagia while taking these drugs, their doctor may be able to determine whether their medication is contributing to the dysphagia.

In general, dysphagia due to problems with the nervous system can be difficult to treat with medications. The main types of therapies doctors use instead include:

  • swallowing therapy, often with a speech-language pathologist
  • dietary changes
  • feeding tubes

Under the direction of a dietitian, dietary changes can make eating easier. Depending on the issues a person is having, a dietitian may recommend:

  • eating softer or thicker foods to help with swallowing
  • eating smaller, more frequent meals
  • creating a relaxing, distraction-free eating environment
  • resting before meals
  • sitting upright in a chair with arms

An occupational therapist can also provide tips on adaptive cutlery, plates, and cups that can make mealtimes easier and less stressful.

Feeding tubes may be placed through the nose or, more likely, the stomach. These tubes do not help with swallowing but can provide nourishment if swallowing becomes too difficult to maintain nutritional or hydration needs. Nasal tubes are typically for short-term use, whereas gastric tubes are intended long term.

Swallowing problems are common in Huntington’s disease and may worsen as the disease progresses.

Swallowing issues can range from bothersome to very serious. Aspiration pneumonia due to dysphagia is among the leading causes of death for people with Huntington’s disease.

Treatment for swallowing difficulties can involve lifestyle changes and adaptive techniques. Speech-language pathologists, dietitians, and occupational therapists all play an important role in managing these symptoms of Huntington’s disease. They can help make mealtime less stressful for those with difficulty swallowing.