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.
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.
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.
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.
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.
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.
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.