Coping with Behavioural Disturbances
by Pete Ellis
in Huntingtons Disease
Department of Psychological Medicine
Wellington School of Medicine
A presentation delivered to the Wellington Conference 1997
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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.
The key principles though all this are to:
retain respect for the individual with HD
help establish routines
maintain sympathy for the sufferers situation
protect the carers and childrens health
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
cant 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.