Behaviour Problems Associated with Hydrocephalus

People with hydrocephalus often exhibit behaviour problems that are mistakenly attributed to disruptive tendencies.

If the person’s behaviour deteriorates rapidly, think shunt; (see hydrocephalus management chart (html Link) if the onset is insidious, it is likely to be due to the damage caused by the hydrocephalus.

Examples of problematic behaviou may include:

Hyperactive / inattentive

The hyperactive persion can be disruptive and if inattentive may get up from their seat and wander around, may hum and tap their fingers etc.

Both problems are often associated with poor short term memory and may improve if strategies to overcome this are employed. These strategies can include reminders (verbal and written), setting work to be done in short bursts, trying to increase   memory span by “memory games”.

Verbal aggression

Verbal aggression - threats, demands etc. - is also distressing and often shocking, again is also seen as a way of controlling people.

Bizarre behaviour

A good example is the person that laughs loudly for long periods (sometimes several hours) with no trigger and often in the middle of the night. there is no explanation,? To them this is quite usual.

Role play

Where the person really believes that he is the person whose persona has taken on e.g. the boy who is an airline pilot and talks jargon obviously learnt from old films - “Chocks away”, “Roger and out” etc.

Threatened suicide

This is, fortunately, uncommon and usually involves long, convoluted accounts of how he is going to commit suicide - mostly unrealistic. For example “I shall jump out of the window and run across the road under a car and then I'll go to the railway line and chuck myself under a train and then I'll drown in the river and you'll be really really sorry”.

Obsessions

People with hydrocephalus are often obsessive with objects and shapes (often circles), colours (particularly primary colours) and people.

People may be overprotective towards their chosen obsession and unable to share: they may become aggressive to people they are obsessed with and this can increase if this person is seen to prefer another person or even if they just talk to another person.

As you can imagine, life can be difficult if the person is obsessed with a family member (particularly mother) or friend as the situation will, of course, arise when this person has to be shared. The concept of sharing people's attention needs to be talked through with the person (and often repeated)

Robotic behaviour

The person may exhibit complicated rituals at home, at clubs, etc. Everything has to be done in the same order by the same person: it can start insidiously with more components gradually included. It has been known for a person to stretch bedtime out to include 17 separate actions!

No sense of danger

The person will but them selves in dangerous situations.

Temper tantrums

There is often a ‘trigger' which starts this mode of behaviour but this can be so subtle that it is difficult to identify - often a change of routine, a perceived insult, a change in weather. Commonly, the person will have to continue the tantrum until it reaches a natural end: they seem incapable of stopping the behaviour despite the parents/cares applying ‘usual' distractions or discipline.

Mood swings

“From angel to devil” in a matter of minutes. This can be a daily (or many times daily) occurrence - keeping a diary will help note the regularity.

Social isolation

Many people have no friends of their own age and this can be due to many factors; but remember, some people like being on their own.

Inappropriate sexual behaviour

Adults may make sexual remarks, may touch other people sexually and may even make sexual approaches . This may be because nothing was done about the situation when the person was a child (parents find it embarrassing and shocking and difficult to address). If you are uncomfortable with broaching the subject, do ask for professional help from your GP or ASBAH adviser.

The need to follow a pattern of behaviour to its conclusion

Unless you can identify the trigger which provokes the behaviour, you will not stop the person until he is ready to stop.

It is as though, once started, the person has to progress through certain stages and is powerless to interrupt the process or allow it to be interrupted.

Lying

People  with hydrocephalus believe that what they say is the truth however improbable or outrageous the lie is. Unlike most, they will, however, often change their story when challenged.

Manipulating - people and situations

People soon learn the best method to get their own way and how to maintain their position of dominance. Using their condition (hydrocephalus) is so easy and so effective!

Once a behavioural poblem has been identified, look for possible reasons

First:

  • is this a shunt related problem?
  • Did it start post shunting?
  • Do you know that the person’s shunt is working efficiently?
  • When did the person last see a neurosurgeon? (If no check in the last year or if the behaviour has started since his last check, make an appointment now).
  • does the behaviour fluctuate?
  • Is it cyclical? If yes, keep a diary and show it to the surgeon.

Then:

  • is there associated epilepsy? If yes, check medication for side effects.
  • has any medication been started or stopped?
  • is the person taking unprescribed (even herbal) or “social” drugs?
  • and is the behaviour related to short term memory problems? Spatial awareness? Concentration?

Now, look at the time of day:

  • is the person feeling harassed? Are you hurrying him? (Try to allow more time if this is the case).
  • has the daily routine changed?
  • do you think the person’s blood sugar is low. (Glucose drink or glucose tablets may help).
  • is the person tired?

Has there been a change in circumstances?

  • New sibling? 
  • New surroundings?
  • New person?
  • Even new furniture can affect some people.

Stress may be a factor:

  • exams or test of any kind.
  • arguments with friends.
  • appointment with doctor/dentist/ optician etc.

Regular behavioural changes first thing in the morning or at the end of the day may signify pressure changes.

What do we do?

There are no simple solutions - if only there were! However, a few simple suggestions may help:

  • family, friends and carers need to work together and appear united.
  • do not discuss your anxieties in front of the person, friends and family.
  • make eye contact with the person when you are speaking to him.
  • give one instruction at a time; ask one question at a time. Keep it all in simple steps.
  • acknowledge good behaviour.
  • be positive.......when you can.
  • avoid difficult situations which may trigger poor behaviour. This could involve a different route to school to avoid road works etc. Or you could try diversionary tactics.

Try to discuss what has happened after the event

  • What triggered the behaviour?
  • Why?
  • What could you or the parent have done to help?

Avoid:

  • threats. The person will only retain the last part of the sentence and will therefore assume that he will not be eating tonight.
  • using sarcasm e.g. ”oh well done” - it will be taken literally.
  • ridiculing the person.
  • verbal overload: a long lecture is a waste of your time and energy. The person will soon lose interest or will forget what he is being lectured about.

Hydrocephalus is a complex condition, no two people are alike. Many will have few or no behaviour problems; others will, unfortunately, demonstrate far more difficulties although not necessarily all at once.

Further information

1) Hydrocephalus and You - published by ASBAH

2) Your neurosurgical unit may have a neuro psychologist with an interest in hydrocephalus.

If you have a problem or query you can ASBAH’s Helpline on 0845 450 7755 Monday – Friday at local call rates or email via helpline@asbah.org. 

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