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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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Hygiene and Self Care

It is quite common for HD sufferers to show less interest in their personal hygiene and self-care decline. Loss of drive and initiative undoubtedly contribution to this change. Also of relevance is that HD can impair personal and social awareness and blunt emotions. The patient is likely to be unaware of the change in him/herself and insensitive to the effect that an unkempt appearance has on others. Moreover, he/she may not experience the feelings of shame or embarrassment which under normal circumstances act as a strong motivator to self-care. The patient may need to be prompted to bathe or change clothes. A prompt often suffices. However, some patients still adamantly refuse to change or change their clothes. It is worthwhile to try to establish bathing and clothing changes as part of a fixed routine - for example occurring at a specific time on specific days. It is also worth considering whether there are certain conditions which influence the patient’s level of cooperation.

The manner in which the prompt is given may be relevant. A patient may react badly to being told what to do, yet respond positively when he/she is encouraged to participate in making decisions. Patients who refuse, for example, to put on the clean clothes given to them, may be willing to put on clothes that they themselves help to select. Patients who participate in making decisions are less likely to be behaviourally disruptive than those from whom all choices have been taken.


Some HD sufferers may act in a disinhibited way which is embarrassing to others. Disinhibited behaviour may take a variety of forms. Patients may act impulsively or rashly without thought, such as making a sudden purchase of a car which they cannot afford. They may make socially in appropriate remarks, for example making personal comments about a person who is within earshot. They may behave in a sexually disinhibited way, such as making sexual advances to a partner in front of the children. Such behaviour results from a breakdown in patients’ social awareness and ability to think through and appreciate the social consequences of actions.

They do not see the repercussions of their own actions. HD patients may also no longer experience so acutely the feelings of embarrassment, guilt and shame which under normal circumstances place constraints on social behaviour. Patients cannot simply be "made to see" the consequences of their actions if the capacity to do so has been damaged by the disease process; nor can patients be made to feel guilt, shame or embarrassment if those emotions have been taken from them by the disease. Disinhibited behaviour may have the inevitable and unfortunate consequence that it leads to a restriction in a patient’s freedom; for example, a partner being obliged to take control of family finances. Some disinhibited behaviour, such as socially inappropriate sexual advances, are best managed by imposing limits, by letting the patient know what is acceptable and what is not, and as far as possible adhering to those "rules".

Sympathy and Empathy

HD sufferers may sometimes seem self-centred, uncaring and thoughtless. Patients’ apparent disregard for the emotional needs of a partner can be particularly hurtful, and is especially poignant when it contrasts with a former loving and caring relationship. The natural tendency is for a partner to feel personally slighted. It is important to emphasize the patients are not being deliberately awkward, wilful or unkind. Apparent self-centredness is in part a consequence of the loss of mental flexibility associated with HD: patients may no longer be able to put themselves in another person’s shoes, to see another’s point of view, to weight up all sides of an argument. They may genuinely fail to see how their remarks or actions affect others. More HD can impair the ability to experience the complex range of subtle emotions which contribute to inter-personal relationships, so that patients’ emotions are more shallow or ‘blunted’.

The adverse effect of HD on the patient’s capacity for sympathy and empathy with others is a major reason why HD can have such a devastating effect on families. Relationships which ought to be mutual may seem one-sided. There are no magical remedies; it is not possible to put back emotions and feelings that have been lost by disease. But remember it is the disease that it is at fault. The patient is not being deliberately uncaring. The motional changes are not under his/her control.

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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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