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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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Speaking to the experts

I would like to start by pointing out that the greatest expertise in how to cope with behavioural problems in the home lies in the collective experience of those who are doing this every day, both sufferers and their supporters. The Huntington’s Associations play a crucial role in passing on effective strategies to others, as do other professionals, but we all need your help in having new ways of coping brought to our attention.

In general, an ounce of prevention is worth a pound of cure, but even with the most favourable circumstances in the world, prevention is not always possible.

In this talk. I will start off by defining what I mean by behavioural disturbances and how they may arise. I will then describe some of these briefly, and outline some ways of coping with them. To start with some definitions,


Behavioural disturbance is a vague term and can cover a range of different problems. These problems can be due to a number of different causes, and it is important to identify these so that treatment of management is appropriate. The cause include the effects of psychiatric illness, the effects of Huntington’s disease on the brain, the effects of personality, both the person’s long standing personality and changes in this due to disease, effects of circumstances, such as relationship problems, money problems, tragedies in the family or community, and also the effects of clear decisions which others may not agree with. For example, most parents do not agree with everything their adolescent sons do, but not all of it would be behavioural disturbance - I hope!

Effects of Huntington’s Disease

It is interesting that although there is a clear relationship between the severity of movement disorder and memory problems, there is no clear relationship between these and the severity of emotional problems. There are two ways of looking at this. The first is that perhaps some of the emotional distress associated with the disease is not inevitably part of the condition, and that with less stigma, more information and more support we might be able to make some difference to this. On the other hand we must remember that The more clear cut psychiatric problems are now being associated with changes in particular areas of the brain, so that some of the problems may well be part of the genetic condition. Even so, they don’t affect everyone.

Now, when thinking about emotional problems I think it is useful to bear in mind both general problems that can affect everyone with a serious illness before looking at the specific issues related to Huntington’s.

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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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