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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Why do people get distressed?
I think that anyone with a serious illness is
likely to experience Distress at the diagnosis of their condition and what it means to
them. This includes fear of future losses of health, relationships and financial security,
fears of incapacity, the need to come to terms with the need to give up some ambitions and
hopefully find others, and changes in responsibilities both in the family and at work. The
exact nature of these will depend on where the person is in their own family life cycle.
Life cycle issues
Many people will have a role as a spouse or
partner, also as a parent, most as a child and a sibling. The issues facing those early in
a new relationship are obviously different to those who have been together many years;
just as the challenges for those with young children differ from those whose children have
left home and have established their own independence.
Obviously, there are specific issues related to
Huntingtons disease as well. I wont dwell on these as they are all too
familiar to people here. They include the genetic aspects and
implications for siblings, children and partners, and the core features of the disorder,
the chorea, the memory problems and the emotional changes.
While the emotional aspects were recognised
early on, it is surprising that the figures for the rate of these problems vary widely. I
would also like to note that the impact of the condition on both spouses and children is
largely unresearched, although Alison Grays research is a major exception to this.
I would also like to stress again that there is no
link between other aspects of illness and emotional problems.
The figures on this slide may seem a bit
foolish to start with. You might well ask if psychiatrists can count. However, they come
from a range of studies of different groups, some based on all the people known to very
good services for people with Huntingtons Disease where one would expect that a
fully representative range of people with the disorder would be surveyed, and some from
services where only those brought to their attention, presumably berceuse of some problems
would be included. I hope this provided some explanation for the statement here that
psychiatric symptoms are the presenting feature of the disorder in a quarter to three
quarters of sufferers and that one third to three quarters of sufferers have some
psychiatric symptoms at any time. The influence of the setting is perhaps most obvious in
the finding that in one US residential facility, one third had aggressive behaviour. That,
of course, may have been why they were admitted, so it isnt that useful a figure. It
is rather like saying that the average level of football skills of those playing sport in
the winter is high.