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Drive & Initiative Loss
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Drive and Initiative
Understanding Challenging Behavior In HD  
by Dr Julie S Snowden 

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.

Mental Flexibility

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.