Why do people get distressed?
General issues

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 Huntington’s disease as well. I won’t 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.

Emotional problems

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 Gray’s 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 Huntington’s 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 isn’t 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.