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Supporting Swallowing and Communication for People with Huntington’s Disease

Huntington’s disease is a progressive, neurodegenerative disease that causes nerve cells in parts of the brain to die. It is estimated that around 2,160 Australians have a diagnosis of Huntington’s disease. People diagnosed with Huntington’s disease experience a range of symptoms that affects their movement and cognition, as well as significant changes to their speech, language, and swallowing. People with Huntington’s disease often require support from a speech pathologist to help with communication and swallowing as the disease progresses. As Speech pathologists play a key role in supporting those with Huntington’s disease, let’s take a look at how we can support swallowing and communication goals for people with Huntington’s Disease.

What is Huntington’s Disease?

Huntington’s disease is an inherited disorder that is passed on from parent to child. When a parent has Huntington’s disease, they have a 50% chance of passing it on to their child.

Huntington’s disease is caused by mutations in a single gene called HTT that interferes with the body’s ability to produce a protein called huntingtin. Although the genetic mutation is present at birth, symptoms do not appear until around 40 years of age. However, in rare cases symptoms may be experienced during childhood or adolescence. People with Huntington’s disease live approximately 10-30 years after initial symptoms appear.

Sadly, there is currently no cure, however symptoms can be managed through pharmacological and therapeutic approaches. This may be supported by a doctor, neurologist, and allied health professionals such as an occupational therapist, physiotherapist, dietitian, and speech pathologist.

Supporting Swallowing and Communication for People with Huntington’s Disease speech pathologist

Symptoms of Huntington’s Disease

As Huntington’s disease affects the areas of the brain that control voluntary movement, a hallmark symptom of Huntington’s disease is chorea, where an individual experiences uncontrollable and involuntary jerking movements in the limbs and facial muscles. People with Huntington’s disease may also experience changes in body posture caused by involuntary muscle contractions also known as dystonia. Alongside physical changes, people with Huntington’s disease experience a variety of changes to their behaviour, emotion, thinking and personality. These changes affect individuals at different rates and levels of severity.

People with Huntington’s disease may experience:

  • Difficulties with executive functioning (eg. Memory, attention, impulse control, and emotional control).

  • Apathy, irritability, and/or depression.

  • Changes to mood and personality.

  • Difficulties with emotional processing.

  • Difficulty coordinating and controlling movements.

  • Involuntary jerking (chorea).

  • Involuntary muscle contractions (dystonia).

  • Problems with swallowing, speech and language, and communication.

Impact of Huntington’s Disease on Swallowing

Eating and drinking plays a vital role in our lives. It not only supports our overall health, but also increases our social wellbeing. When we eat and drink, we are often joined by family and friends in a social setting,  thereby making mealtimes an integral part of our psychological and emotional wellbeing.

As symptoms worsen in Huntington’s disease, individuals may begin to experience swallowing difficulties, also known as dysphagia, when eating and drinking. Individuals with Huntington’s disease may experience reduced chewing ability, difficulties with self-feeding, inattentiveness and be impulsive when eating. These changes to their swallow may increase the risk of choking episodes and increase the risk of food and fluid entering the airway, also known as aspiration . Not only does increased episodes of choking and aspiration pose risks to an individual’s health, such as aspiration pneumonia, malnutrition, dehydration, or even death, it can also make mealtimes uncomfortable, challenging, embarrassing and may cause anxiety and social withdrawal at mealtimes.

Speech Pathologists' Role in Supporting Swallowing Changes

Although speech pathologists are unable to reverse the deterioration of an individual’s swallow function, they are able to conduct swallow assessments, provide diet and fluid modifications according to the International Dysphagia Diet Standardisation Initiative (IDDSI) framework, educate individuals with Huntington’s disease, their family, and/or carers about safe swallow strategies, and teach compensatory strategies to make mealtimes safer, more enjoyable and to promote positive participation during mealtimes.

Safe Swallow Strategies

  • Sit upright during mealtimes.

  • Stay upright for 30 minutes after a meal/snack/drink.

  • Take smaller mouthfuls (consider eating with a teaspoon over a tablespoon).

  • Alternate mouthfuls of food and fluid.

  • Reduce distractions when eating or drinking (eg. Turn off TV, reduce noise).

  • Ensure that there is no food or fluid left over after each mouthful.

  • Be sure to maintain oral hygiene (rinsing mouth with water after meals and brushing/flossing teeth daily).


Impact of Huntington’s Disease on Communication

As Huntington’s disease progresses, individuals gradually lose the ability to control the muscles in their mouth, throat, and tongue. Not only does this affect swallowing, but it also affects speech. Speech may become slurred, less intelligible and there may be changes to the rate of speech and volume. Alongside changes to speech, people with Huntington’s disease will experience changes to their cognition which affects their ability to communicate and understand others. This can make conversations more difficult to follow, and lead to increased frustration as a result of miscommunication, and even strain relationships with others.

Speech Pathologists' Role in Supporting Communication

As speech, language, and communication become more difficult, people with Huntington’s disease may have trouble communicating their needs and wants and be misunderstood by others.  This can lead to individuals with Huntington’s disease withdrawing from social engagement and participation in activities which can lead to feelings of social isolation, loneliness, depression, and anxiety. Losing the ability to speak and communicate with others can be incredibly difficult for people with Huntington’s disease and those close to them. However, with support from a speech pathologist, those with Huntington’s disease can feel supported throughout their attempts to communicate, maintain social interactions, and participate in their daily activities.

Speech pathologists can help to identify strengths and weaknesses in speech, language, and communication through speech and language assessment, providing   communication strategies for people with Huntington’s disease and their family and/or carers, supporting the use of augmentative and alternative communication (AAC) through communication cards or electronic devices and supporting social communication.

The following strategies can be used by a communication partner of an individual with Huntington’s disease, to reduce the risk of communication breakdowns occurring.

Communication Partner Strategies

  • Approach the person front on and introduce yourself.

  • Speak slowly and clearly.

  • Allow the person time to process and respond.

  • Ask simple yes/no questions or multiple-choice questions.

  • Make use of gesture when communication.

  • Make use of picture or communication supports (eg. Picture cards, communication cards, AAC devices).

  • Observe and use non-verbal cues to understand what the person is trying to communicate (eg. Facial expression, gestures)

  • Reduce distractions (eg. Closing doors, turning off the TV, reducing noise).


Find a Speech Pathologist

Although there is no cure for Huntington’s, support from a team of health professionals, family, friends, and carers can help support individuals with Huntington’s disease to continue to live meaningful lives.

A speech pathologist’s role in supporting those with Huntington’s disease is more than modifying their diet. They can help support people with Huntington’s disease to continue to eat and drink safely and comfortably, continue to communicate meaningfully with others, maintain social relationships, and support choice and independence as the disease progresses.

If you need help with your communication or having swallowing concerns, reach out to our Team of Speech pathologists. We offer telehealth, In-home Services and appointments within our Mulgrave Clinic.


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