Managing challenging behaviour

Most carers of people who have Huntington’s will notice behaviour changes in the person they’re caring for. This is due to changes in their brain and is not something they can do anything about. It can be difficult for the person themselves and also for the people around them.

  • Although there are some common behaviour changes that we often see, everyone’s experience of Huntington’s is different. As a family member or carer of someone with Huntington’s, the best thing you can probably do is to find out what triggers certain behaviours and develop some coping strategies for managing them.
  • The best way of managing a person’s challenging behaviour is often to learn to modify your own behaviour when you’re with them.
  • It’s also important to know, however, that some behaviour change can be modified with medications. If behaviour is becoming a problem, it’s worth speaking to your clinician about this.

Managing moods

There are some really simple but key things to think about in relation to behaviour that apply to all of us, whether or not we have Huntington’s disease. We all tend to be more grumpy or irritable if we are hungry, thirsty, in pain, tired etc. In the case of someone with Huntington’s, these changes may be more exaggerated and it may be harder for them to recognise there is a problem and do something about it.

You may also notice that if someone usually has involuntary movements (chorea), then if they are hungry, thirsty, tired or agitated, their movements may become worse. This can be an early sign that you should offer a snack or drink or look for another cause and solution from the following checklist.

Top ten checklist for managing challenging behaviour

  1. Nutrition - is the person hungry? Hunger can lead to an increase in movements and bad moods. Managed hunger can improve movements, lessen frustration and fatigue and improve overall wellbeing.
    Tip: Encourage eating and drinking little and often
  2. Pain - someone with Huntington’s might not tell you how they feel or if they are in pain.
    Tip: Always ask about pain
  3. Temperature - are they too hot or too cold? People with Huntington’s sometimes have difficulty regulating their body temperature and this can affect can affect their mood, motivation and overall well being. They might not tell you.
    Tip: Always ask and look for signs of heat or cold. Consider clothing, room temperature, ice packs, fans, blankets, etc.
  4. Communication - difficulty in communicating can increase anxiety and frustration and affect involuntary movements (chorea). People with Huntington’s communicate better when they are not hungry, not tired, not in pain, not too hot or cold, and when their moods are stable.
    Tip: Speech therapy can provide useful advice and exercises. Also look at our article on Managing communication difficulties.
  5. Moods - what’s their mood like? Are they feeling depressed, frustrated, irritable, angry or more impulsive than usual? If so, go through a moods checklist; are they hungry, in pain, too hot or cold, tired, not sleeping, frightened, constipated, nauseous, struggling to communicate? Has something changed in their routine?
    Tip: Go through this list of questions.
  6. Mobility - are they falling more?
    Tip: Check nutrition. Check for signs of infection.
  7. Sleep and fatigue - having Huntington’s can be hugely tiring. Poor sleep is quite common and can cause a drop in mood and overall wellbeing. Sometimes people with Huntington’s are more active at night and sleepy in the day, which can be difficult to cope with.
    Tip: Encourage short power naps in the day. Follow the Simple rules for a good night’s sleep in Huntington’s disease.
  8. Medication - are they over- or under-medicated? This can affect nutrition, moods, communication and behaviour. Has there been a recent change in medications?
    Tip: Ask for regular review of medications by GP or consultant. If behaviour has worsened following a change in medications, consult the prescriber.
  9. Emotional support and life enrichment - do they have opportunities to enjoy themselves and feel loved? How is their self esteem?
    Tip: Recreation, exercise and family support can all help mood and behaviour.
  10. Other health conditions - if none of the above factors apply, there might be another medical problem.
    Tip: Consider if any other health conditions might be affecting the person with Huntington’s and explore this possibility with your GP.

Adjusting your own behaviour

In the longer term, there are many changes you can make yourself to stop or prevent challenging behaviour. This isn’t easy and it can be exhausting, but some things can become habit.

We know that most people with Huntington’s find it hard to make choices.

  • Instead of asking “What do you want for dinner?” ask “Would you like fish and chips for dinner?”. Some people may even prefer it if you say “We’re having fish and chips for dinner”.
  • If you are in a restaurant it can be overwhelming for someone with Huntington’s to see a large menu. If you know what they usually like, try suggesting that they have this. This may make the experience more enjoyable for them.

Ask yourself if something is a problem, and if so, who it’s a problem for. For example, someone with Huntington’s may not want to be around other people. This can be upsetting as you may feel that they are missing out on social interaction. However, the person themselves may find being in a group overwhelming and may be much happier in a quiet place by themselves.

  • You might want to think about having fewer people to the home at one time or arranging things so the person you’re caring for has someone to talk to on a one-to-one basis, in a quieter place, away from the noise of a larger group.
  • Don’t feel bad if the person you’re caring for takes themselves away when people come over. Perhaps check afterwards if they are OK and then let them catch up on all the news in a more peaceful environment.

Further reading

There are many more strategies for managing behaviour in our fact sheet which looks at some common issues and solutions.

The book ‘Hurry up and Wait’ by Jimmy Pollard is very helpful in understanding why people with Huntington’s can behave in certain ways and offering useful solutions. It is available to purchase from our shop.

If your situation is more complicated and potentially abusive or putting anyone (including you) in danger, please look at our Carers Guide which gives advice on how to stay safe and protected.

Other sources of help

Alongside learning more about behaviour it can also be really helpful to talk to others in a similar position. Find out if there is a local HDA branch, support group or carers group in your area or use our on-line message board to talk to other people facing similar challenges.

Your local SHDA will also be able to talk through behavioural issues with you and look at possible solutions.

If you are struggling with any aspect of managing behaviour, please do contact us. We’re here to help.