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7 Sep 16

Coping with Behavioural Disturbances
in Huntington’s Disease

by Pete Ellis
Department of Psychological Medicine
Wellington School of Medicine

A presentation delivered to the Wellington Conference 1997
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Anxiety is generally agreed to be very common, although the surveys I reviewed for this talk did not quote any specific figures. Anxiety is a common feature of many other conditions, such as depression, and when the underlying condition is treated, it usually improves at the same time. However, when anxiety is the main issue, it usually responds to appropriate anti-anxiety medication


Depressive illnesses affect some 30% of those with HD. This is not periods or unhappiness and dissatisfaction, but persistent periods of low mood, all day every day for at least a fortnight, which also affects appetite, sleep, concentration and makes the person feel helpless, hopeless and worthless. It is more common in those with a later onset of HD. This is a serious condition that requires treatment, both to relieve suffering and because there is an 4-6 fold increased risk of suicide, especially in the elderly.

In HD it may be due to involvement of caudate nucleus in brain. It does responds to treatment with antidepressants.

Mania or Hypomania

Mania is a condition where the person has a markedly elevated mood, boundless energy, a lack of need for sleep, pressured speech so that you can’t interrupt them, increased appetites for food, social relationships, sex, and possessions, and a tendency to rapidly get into all sorts of difficulties.

It affects some 1% of the general population but 10% of those with HD. Episodes can be brief or more enduring, and tend to be recurrent. Hypomania is a less severe form of the same condition, which tend to persist for weeks or months, while mania last for days or weeks.

Both conditions respond to treatment with mood stabilising medication such as carbamazepine


Psychosis is a term used to refer to those conditions in which people are out of touch with reality and suffering either hallucinations, where they are hearing or seeing things which are not actually there, or delusions, where they have beliefs that are not shared by others of their social and cultural background. It affects some 6% of those with HD. It is more common in early onset illness. Treatment should include antipsychotic medication. However, there are some problems with the older antipsychotic drugs and the recently available newer drugs may be more effective.

Before going on to look at coping strategies, I would like to go back to the beginning, as it were. I would like to say a few words about predictive testing.

Predictive Testing

When this first became available, there were initial concerns about the impact of bad news on those in the programmes around the world. Although there were some early reports suggesting that this fear was appropriate, currently, it seems that the level of serious psychiatric problems following testing is low. However, this doesn’t really answer the question of whether the existing support structures and particularly the psychological assessment process is the reason for this, or not. Personally, I think it is mainly a tribute to robustness of those choosing testing, but also to the level of support they receive form family and friends, the Association and the genetic services.

Some recent studies have shown that Most of those who did have problems had mild depression at time of testing and something else went wrong in their life soon after, usually some unpredictable event.

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Appreciation and thanks must go to Judy Lyon for compiling the wealth of information available
on this site, and to Graham Taylor for maintaining the original site for so long.

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