Dr Ken Barrett's Speech to
Huntington's Disease Association
(England and Wales)
National AGM and Family Conference

Saturday 19th SEPTEMBER 1998

MENTAL HEALTH PROBLEMS ASSOCIATED WITH HUNTINGTON'S DISEASE

In the last 2 decades there has been a significant change in the public attitude towards mental illness. Some people in the public eye, most notably Lady Diana, have been more open about the fact that they have suffered mental health problems. There is also a growing awareness that very traumatic events such as the Hillsborough disaster, produce mental health problems in most people. Most brain disorders increase the affected person's risk of getting mental health problems. Brain disorders can be stressful to cope with but also alter temperament, emotion and thought. This is true in the case of Huntington's disease, a condition in which 60-70% of people have clinically significant mental health problems at some time during the illness and all experience changes in personality and intellect. The parts of the brain most affected in Huntington's disease, the basal ganglia, have a complex role in movement thinking and feeling so a wide range of difficulties can occur. Sometimes the mental changes are noticed before problems with movement. This is usually a change in personality, a bout of anxiety or depression or more rarely a psychosis (that is to say, losing touch with reality). Problems with thinking including difficulty concentrating, remembering or reasoning things out also occur but in most cases such 'cognitive' problems are mild until the later stages and can seem worse than they are because of difficulties with communication.

Personality can change in a number of ways. A previously outgoing person can be quieter, less sociable and less interested in things. A placid, careful person can become more volatile and temper prone and become impulsive. As the condition progresses, though, people become quieter and tend to dislike change. There is also a tendency to have an incomplete awareness of how disabling the condition has become. This and the resistance to change can make people very reluctant to agree to necessary changes in care or support.

The most common mental health problem apart from a change in personality is a bout of depression. This can come on very gradually and has a tendency to be hidden by a person's lack of communication and the fact that their voice tends to become flat and facial expression somewhat unchanging. Depressive illness though, affects not only mood but also appetite, sleep and interests so every area of a person's life and function can be impaired. In most cases anti-depressant medication is effective in people with Huntington's disease. Much more rare is an episode of psychosis. Sometimes people develop odd beliefs and at times can even hallucinate or become somewhat mixed up in their thinking. Such problems can occur in any of us and are in most cases are able to be successfully treated with medication.

More recent drugs such as Supiride and Risperidone are particularly effective and have the added benefit in Huntington's disease of reducing chorea and restlessness. In fact these drugs can be used in the absence of psychiatric symptoms to reduce such movements. The oldest drug that is used for treating movement disorder is Tetrabenazine and this can be highly effective and suits some people very well, particularly in low dosage. However, in higher doses or in people who are sensitive to it, it can prove over-sedating or even make people more damped down emotionally. Fortunately, a number of alternatives are now available.

One of the biggest obstacles to getting good mental health care in Huntington's diseas is the relative rarity of the condition and the relative scarcity of professionals who have a specialist knowledge of the disorder. There is also an awareness that acute psychiatric wards do not provide the best range of care in most cases other than in the early stages of the illness. There is a need to educate health commissioners (Health Authorities) and providers (hospitals, specialists) in the needs of people with HD. I and a small number of colleagues who have a specialist interest are planning to meet next year at the Royal College of Psychiatrists to look at ways of improving training for psychiatrists and improving provision of services for people with Huntington's Disease. In addition, the 1997 Health Advisory Service Report. "Heading for Better Care" published by HMSO (ISBN 0-11-321937-7) contains much useful information on Huntington's Disease and has been well used by the Huntington's Disease Association as a way of flagging the needs of people with Huntington's Disease and their families to health professionals and managers. Our goal should be good mental health care for people with Huntington's Disease across the country. That goal is a little nearer now than it was 2 years ago.


Dr. K Barrett
Consultant Neuropsychiatrist
Haywood Hospital

October 1998

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