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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
Page 1 | Page 2 | Page 3 | Page 4 | Page 5 | Page 6

Issues for Spouses

Confronting HD as a spouse is always difficult. How difficult will be affected by the spouses own personality, how much information they have had about the condition and when they got this information, and the age of onset of the condition, among other factors. It requires changes in thinking and behaviour in relation to their partner, changes in financial plans, change in marital relationship and has implications for any children

Probably the biggest change as the disease advances is in roles. Gradually one often sees a conflict between the role of carer or nurse, and that of lover and partner.

The affected person may become much more irritable or depressed than before, or have other psychological problems.

Sexual relationships also tend to change, sometime becoming more active, sometime less, and these changes are not always desired by the spouse.

Ways of coping with all these changes include support from other spouses, time out for days or weekend or longer with supportive friends, professional advice and involvement of other members of the extended family.

Effects on Children

It is important not to forget the effect of all of this on the children. Obviously this varies with their age. I will not expand on this at this stage but we might discuss it more later.

Key Principles

The key principles though all this are to:
    retain respect for the individual with HD
    help establish routines
    maintain sympathy for the sufferer’s situation
    protect the carer’s and children’s health

Specific Problems

Irritability is common, and can sometimes be reduced by decreasing the complexity of the environment. By this I mean perhaps reducing the number of tasks that the person is expected to do. Perhaps they are finding it difficult to deal with the time management issues around preparing a meal, but still want to contribute to cooking. Perhaps they could be given the task of preparing the vegetables and someone else can take over ensuring they go on the stove at the relevant times. Some people benefit from medications to reduce irritability, but this is not a consistent finding with everyone.

Many people get anxious when they feel that they can’t do all that is being asked of them. I know I do. Strategies to help the person with HD in this situation include decreasing the demands, such as by stopping work perhaps, and developing and sticking to predictable routines. Anti-anxiety medication can also be helpful.

Other problems include depression. Exploring the reasons behind the depression, and trying to work these through, is essential, and there are also a range of antidepressants which are effective in treating the physical aspects of Depressive illnesses.

Hallucinations and delusions are less common, but do respond to antipsychotic medication.


So, in conclusion, the main aims are to help the sufferer:

    to maintain as much independence and autonomy as possible,
    by fostering respect for the sufferer and the carers
    by ensuring that there is support available as and when needed and wanted
    to accept the need for continuing adjustments

Finally, going back to some original comments, HD has come a long way out of the closet, from being an unmentionable family disgrace to an acknowledged physical illness. I believe that there is hope that research is going to make a significant impact on management of this condition in the foreseeable future and that in any event the changed attitudes about the condition will lead to some decrease in the level of psychiatric and psychological disability which has been associated with the illness in the past.

Page 6

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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