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7 Sep 16

Behavioural Problems in Huntington’s Disease

by Dr Julie S Snowden

The following article by Dr Julie S Snowden has been taken from Issue 50 - Winter 1996 edition of the Huntington’s Disease Association Newsletter (London)
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Denial of Illness

The onset of HD inevitably leads to life changes, which require accommodation and adjustment from both sufferers and their families. The process of adjustment is made difficult if the sufferers refuses to accept that there is anything wrong. To an external observer, the involuntary movements may be obvious, and it may be evidence that the person no longer carries out occupational and domestic tasks as efficiently as before. It is easy to assume therefore that these changes must be equally apparent to the sufferer. The conventional interpretation of lack of acceptance of illness is that the person is ‘in denial’, that the patient at a sub-conscious level is aware of the reality which he or she refuses consciously to acknowledge. Such as interpretation can be an over simplification. Research suggests that HD sufferers may not have normal experience of their involuntary movements: if patients’ own direct physical experience does not ‘match’ with their perception of the illness in others. There are additional factors which may contribute to non acceptance. The disease itself can impair the ability to self monitor and to reflect on one’s own performance: sufferers may genuinely be unaware of mistakes which are evident to others. It can impair too the ability to draw inferences: a persona may be aware of clumsiness or forgetfulness, yet fail to see the implications of these symptoms for HD. Refusal to accept illness is not simply a result of obstinacy on the part of the patient - it is a feature which occurs in some (not all) sufferers as a consequence of the disease process itself.

Carers and professionals may need to accept that confronting patients with a diagnosis of HD will not always induce immediate acceptance. An approach which focuses on specific symptoms rather than diagnosis can sometimes be helpful (for example, a suggestion that the patient is ‘a bit clumsy and coordination is not so good’ may be accepted more readily as a reason for curtailing driving than ‘having HD’). Most patients do come to accept the diagnosis given time.

Behaviour and Disease Progression

Certain aspects of behavioural change become more pronounced with disease progression. For example, patients patients typically show less and less initiative over the course of the disease; they show progressively less concern over their own appearance; they become systematically less aware of the feelings of others. However, there is not an inevitable association between the length of time that the patient has been ill and the severity of the behavioural disturbance. Indeed, some behaviours may become more manageable as the disease becomes more advanced: for example, irritability and aggression may gradually give way to apathy and unconcern. Similarly, disinhibited behaviour may be most pronounced early in the disease when the patient is most active, and diminishes and becomes less of a problem later as the patient loses drive and initiative. Mood disturbances such as depression tend to occur sporadically and are unrelated to the duration, severity or progression of the disease.

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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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