Huntington's disease - Features of Huntington's disease

The clinical features of Huntington's disease can include psychiatric problems and difficulties with behaviour, feeding, communication and abnormal movements.

People can start to show the features of Huntington's disease at almost any age, but most will develop problems between the ages of 35 and 55.

The condition usually progresses and gets worse for around 10-25 years, until the person eventually dies. Signs and symptoms may vary between individuals and there's no typical pattern.

Early features, such as personality changes, mood swings and unusual behaviour, are often overlooked at first and attributed to something else.

Some people with Huntington's disease may not recognise that they have any problems.

Behavioural changes

Behavioural changes are often the first features to appear in Huntington's disease and can be the most distressing. These changes often include:

• a lack of emotions and not recognising the needs of others in the family
• alternating periods of aggression, excitement, depression, apathy, antisocial behaviour and anger
• difficulty concentrating on more than one task and handling complex situations
• irritability and impulsiveness

A person with Huntington's disease may appear to have a lack of drive, initiative and concentration, making them seem lazy. However, this isn't the case – it's just the way the condition affects the brain. As part of this, they may also develop a lack of interest in hygiene and self care.

The Huntington's Disease Association has more information about the behavioural problems (PDF, 219kb) associated with the condition.

Psychiatric problems

Many people with Huntington's disease have depression. This occurs as part of the condition, not just as a response to the diagnosis. Symptoms of depression include continuous low mood, low self-esteem, a lack of motivation or interest in things, and feelings of hopelessness.

A few people may also develop obsessive behaviours and schizophrenic-like problems, although this is relatively rare.

Studies have shown that people with Huntington's disease are more likely to consider suicide, particularly near the time of diagnosis when the condition is becoming apparent, and when they start to lose their independence.

Find out how to get help if you think someone you care for is suicidal.

Movement problems

Huntington's disease affects movement. Early features include slight, uncontrollable movements of the face, and jerking, flicking or fidgety movements of the limbs and body. These move from one area of the body to another and can cause the person to lurch and stumble.

These features are often first seen when the person is walking or resting (sitting in a chair or lying in bed).  

As the condition progresses, the uncontrollable movements will become more frequent and extreme. However, over time this may change and in the advanced stages of the condition a person's movements may become slow and their muscles more rigid.

Feeding problems

People with Huntington's disease tend to lose weight, despite having a good appetite. They can find eating tiring, frustrating and messy because the mouth and throat muscles don't work properly, due to the loss of motor control. In some cases, this can lead to choking and recurrent chest infections.

Loss of coordination can lead to spilling or dropping food. Swallowing is a problem, so choking on food and drink, particularly thin drinks such as water, can be a common problem.

A referral to a dietitian or a speech and language therapist may be necessary if there are difficulties with swallowing. In some cases, a feeding tube can be inserted. 

Read more about living with Huntington's disease.

The Huntington's Disease Association has more information about the eating and swallowing difficulties (PDF, 320kb) associated with the condition.

Communication problems

Communication and cognition (perception, awareness, thinking and judgement) are affected by Huntington's disease.

People with the condition often have difficulty putting thoughts into words and slur their speech. They can understand what's being said, but may not be able to respond or communicate that they understand. However, with time, a person with Huntington's disease will become less responsive, more withdrawn and communicate little.

Sexual problems

People with Huntington's disease can have problems with sexual relationships, particularly during the early stages of the condition. This is usually a loss of interest in sex or, less commonly, making inappropriate sexual demands.

The Huntington's Disease Association has more information about sexual problems (PDF, 193kb) associated with the condition.

End of life

In the later stages of Huntington's disease, the person will be totally dependent and need full nursing care.

Death is usually from a secondary cause, such as pneumonia or another infection.

You may find the end of life care guide useful if you're caring for someone who's dying, or if you want to plan your end of life care in advance.

Juvenile Huntington's disease

Juvenile Huntington's disease is an uncommon form of the condition that can occur in people younger than 20 years old. Common signs include:

• a rapid decline in school performance
• changes in handwriting
• problems with movement, such as slowness, stiffness, tremor or muscle twitching (similar to the features of Parkinson's disease)
• seizures (fits)