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.
Doing Two Tasks at Once
Many everyday situations involve people doing more than one activity at a
time e.g. answering the childrens questions while cooking or watching the television while doing the ironing. Doing two things
at once requires the mental flexibility to switch attention rapidly between tasks - however engrossed in the television program
one may be it is essential to keep switching attention back to the ironing to avoid burning the clothes. HD can impair rapid
switching of attention, making it difficult for sufferers to carry out two tasks at once effectively. In contrast many HD
sufferers are very good at sustaining attention on a single task, provided they are not distracted. "One thing at a time"
is a good general rule. Overloading what the patient can cope with at one time may be one source of patients irritability
and disruptive behaviour.
It is worth remembering that a physical activity such as walking, requires much more conscious attention
for the HD sufferer than for other people. An HD patient may find it difficult to carry on a conversation at the same time
as walking and may sometimes be noted to stop walking before answering a question. This is because both activities require
conscious attention. To carry out both simultaneously would require rapid switching of attention from one to the other. The
HD patient who has difficulty rapidly switching attention is obliged to stop one activity before embarking on the other.
Quality of Performance
It is not uncommon for HD sufferers to carry out everyday tasks less efficiently
than before. For example, in writing a letter a patient may miss out words; in washing dishes, plates may not be properly
cleaned. Indeed, for many sufferers reduced efficiency is the precipitant of medical retirement from work. The poorer quality
of performance on tasks may be a source of irritation to patients families who may perceive the sufferer as being slapdash
or not bothered. It is not the case that the patient is simply not trying. In fact many patients put an enormous amount of
effort into their activities. The errors arise as a result of the changes that take place in the brain. HD patients do not
forget how to do a task. What becomes impaired is the ability to self motivate and check the results of ones own performance.
The patient is often is aware of errors that are apparent to others.
Encouraging the patient to carry out tasks is a good thing. However, it is
worth being aware of - and trying to accommodate - the patients possible limitations. In the case of the patient who lacks
initiative, it falls on other family members to act as a stimulator to action. So too, in the case of a patient who carries
out tasks inefficiently checking procedures are dependent upon others.