Huntington's disease

Huntington’s disease is an inherited genetic condition that causes dementia. It causes a slow, progressive decline in a person’s movement, memory, thinking and emotional state. Huntington’s affects about 8 in every 100,000 people in the UK. It usually affects people aged between about 35 and 45, but symptoms can appear in younger adults and children.

Huntington’s disease is normally diagnosed when a person starts to have problems with controlling their movements. Many people with Huntington’s disease may have been having emotional and behavioural symptoms for years before this, such as:

• severe depression
• apathy
• irritability
• obsessive–compulsive behaviours.

They are also more likely to misuse alcohol or drugs, or to self-harm.

In the early stages of Huntington’s, some people may develop symptoms of dementia such as problems with their thinking and perception. They may be less able to recognise other people’s emotions. They may also find it difficult to concentrate, plan and remember things. Because of these symptoms and emotional problems, the person may have difficulties with their relationships and work.

The memory problems that people with Huntington’s disease have are often different to the memory problems that people with Alzheimer’s disease have. For example, people with Huntington’s may have a good memory of recent events but often forget how to do things (known as ‘procedural memory’). Those affected may continue to recognise people and places until the very late stages of the disease, unlike people with Alzheimer’s disease.

During the later stages of Huntington’s disease, the person may have a lot of difficulty with moving, eating or speaking. They will be likely to need more personal care and support.

Huntington’s is a genetic condition. If a person has one parent who carries the faulty gene that causes Huntington’s disease, they will have about a 1 in 2 chance of inheriting the condition. If people are worried that they may carry the gene, they can ask their GP to refer them for genetic testing and counselling. For more information see Genetics of dementia.

There is no cure for Huntington’s disease. Research is currently being carried out to try to switch off the gene that causes the condition. It is hoped that this will reduce the symptoms of Huntington’s disease, including dementia.

The Huntington’s Disease Association has a website and a helpline that provide information and support for people affected by the condition. For more information see Rarer types of dementia - other resources.