HD sufferers may show a loss of drive and initiative. If left to their
own devices they may do nothing, stay in bed or spend the day watching television. This behaviour can be highly frustrating
for family members, who may perceive the behaviour as "laziness" or the patient as "not pulling his/her weight". It can be
a great source of family conflict when the patients partner is under stress from multiple responsibilities - for example,
acting as breadwinner, caring for a young family, carrying out domestic chores.
It is important to recognize that the patients behaviour is not due
to laziness. HD affects the part of the brain (the deep part of the brain or subcortex and its connections to the regions
at the front of the brain) which are crucial for drive and initiative. These are the parts of the brain which allow
us to think ahead, to make plans, to generate the actions appropriate to those plans, and to persevere on tasks until
goals are achieved, the drive or foresight to self-initiate activity is severely compromised, even though the skill to carry
out the activity is still retained.
The patient may potentially be capable of carrying out a task, yet
is unable to generate the motivation or initiative to embark on it.
Arguing with the patient will not overcome his/her difficulty. Encouraging
joint participation in activities e.g. helping with the washing up, may be helpful and is generally more successful than assigning
the patient solitary pursuits. This is because the other participants in an activity act as an external stimulator or motivator.
The patient does not have to rely on his/her own drive and initiative.
Participation is important. Not only does it help to keep the patient active, it also helps to provide a sense of worth -
that the patient is able to make a constructive contribution.
HD sufferers may sometimes seem rather inflexible and mentally rigid.
They may adhere to set behaviour patterns or routines and appear unwilling to adapt to new situations or altered circumstances.
They are not being deliberately obstinate. The brain changes that occur
in HD can impair the ability to think flexibly and to adapt easily to novel situations. Patients generally feel most comfortable
and confident in highly familiar situations, involving a fixed routine.
If the patients appears to need routine, then it is worthwhile trying
to accommodate this; it does not mean that variety or a stimulating environment is inevitably sacrificed, it is simply that
a structure is imposed on the patients day so that he/she knows what will happen and when.