Behavioural Problems in Huntingtons 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 Huntingtons Disease Association
Page 1 |
Page 2 |
Page 3 |
Page 4 |
Page 5 |
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 patients 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 patients 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 persons shoes, to see anothers 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 patients
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.