How to manage challenging Huntington’s behaviour
If you are a family member or carer of someone affected by Huntington’s disease you know that sometimes the behaviour of the person affected can be hard to manage. Challenging behaviour is rather common with people diagnosed with Huntington’s, this is due to changes in their brain and is not something they can control. It can be difficult for the person themselves and also for the people around them. In this article, we will be giving advice on how to manage challenging Huntington’s behaviour and how to alter your own behaviour to stop or prevent challenging conduct.
What type of changes should you expect?
Although there are some common behaviour changes that we often see in people diagnosed with Huntington’s, everyone’s experiences will most likely be different. As a family member or carer of someone with Huntington’s, the best thing you can do is to find out what triggers certain behaviours and develop some coping strategies for managing them. Common behavioural issues include:
- Anxiety and depression
- Disinhibition
- Irritability
- Apathy
- Psychosis
- Social cognition
The above issues can manifest in many different ways from milder social and behavioural problems such as speaking out of turn, lack of motivation and crankiness to hypersexual behaviour, aggression and obsession. The best way of managing the individual person’s behaviour is to learn how to modify your own behaviour when you’re with them. It is also important to know that some behaviour change can be modified with medications. If behaviour is becoming a problem, it’s worth speaking to your clinician about this.
How to manage moods
There are some really simple things to consider when thinking about moods and they apply to all of us! We all tend to be more grumpy or irritable if we are hungry, thirsty, in pain or tired. 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, that’s where you come in.
You may also notice that people affected by Huntington’s choreic movements may become more pronounced if they are hungry, thirsty, tired or agitated. This can be an early sign that you should offer assistance. Below is a comprehensive list of things to look out for when managing moods.
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 their mood and they might not tell you they are too hot or cold.
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 choreic movements. People with Huntington’s communicate better when they are content and 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 every day to ensure they are comfortable.
6. Mobility - are they falling more?
Tip: Check nutrition. Check for signs of infection. Remove any obstructions.
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 HD Buzz’s ‘Simple rules for a good night’s sleep in Huntington’s disease’ article.
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 a regular review of medications by your 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.
How to adjust your own behaviour
There are many changes you can make 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. There are several tacks you can try to cater for this, these include:
- 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”. Help by giving the answer before asking the question.
- 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. Some tips to aid with this include:
- 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.
Additional sources of support
You can learn more about managing behaviour in our fact sheet which looks at some common issues and solutions. There are also helpful books such as ‘Hurry up and Wait’ by JimMY Pollard which aids in understanding why people with Huntington’s can behave in certain ways and offers useful solutions. The book is available from our shop.
If your situation is more complicated and potentially abusive or putting anyone (including you) in danger, please look at our fact sheet called Advice for people in a potentially abusive domestic situation which gives advice on how to stay safe and protected. Please contact us on 0151 331 5444 if you find yourself in an abusive situation for advice on what to do next.
Talking to others in a similar situation to yourself can be a massive help. You can find out if there is a local HDA branch, support group or carers group in your area or use our online message board to talk to other people facing similar challenges. If you are struggling with any aspect of managing behaviour, please contact us on 0151 331 5444 or email info@hda.org.uk. We’re here to help.
If you are a family member or carer of someone affected by Huntington’s disease you know that sometimes the behaviour of the person affected can be hard to manage. Challenging behaviour is rather common with people diagnosed with Huntington’s, this is due to changes in their brain and is not something they can control. It can be difficult for the person themselves and also for the people around them. In this article, we will be giving advice on how to manage challenging Huntington’s behaviour and how to alter your own behaviour to stop or prevent challenging conduct.
What type of changes should you expect?
Although there are some common behaviour changes that we often see in people diagnosed with Huntington’s, everyone’s experiences will most likely be different. As a family member or carer of someone with Huntington’s, the best thing you can do is to find out what triggers certain behaviours and develop some coping strategies for managing them. Common behavioural issues include:
- Anxiety and depression
- Disinhibition
- Irritability
- Apathy
- Psychosis
- Social cognition
The above issues can manifest in many different ways from milder social and behavioural problems such as speaking out of turn, lack of motivation and crankiness to hypersexual behaviour, aggression and obsession. The best way of managing the individual person’s behaviour is to learn how to modify your own behaviour when you’re with them. It is also important to know that some behaviour change can be modified with medications. If behaviour is becoming a problem, it’s worth speaking to your clinician about this.
How to manage moods
There are some really simple things to consider when thinking about moods and they apply to all of us! We all tend to be more grumpy or irritable if we are hungry, thirsty, in pain or tired. 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, that’s where you come in.
You may also notice that people affected by Huntington’s choreic movements may become more pronounced if they are hungry, thirsty, tired or agitated. This can be an early sign that you should offer assistance. Below is a comprehensive list of things to look out for when managing moods.
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 their mood and they might not tell you they are too hot or cold.
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 choreic movements. People with Huntington’s communicate better when they are content and 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 every day to ensure they are comfortable.
6. Mobility - are they falling more?
Tip: Check nutrition. Check for signs of infection. Remove any obstructions.
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 HD Buzz’s ‘Simple rules for a good night’s sleep in Huntington’s disease’ article.
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 a regular review of medications by your 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.
How to adjust your own behaviour
There are many changes you can make 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. There are several tacks you can try to cater for this, these include:
- 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”. Help by giving the answer before asking the question.
- 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. Some tips to aid with this include:
- 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.
Additional sources of support
You can learn more about managing behaviour in our fact sheet which looks at some common issues and solutions. There are also helpful books such as ‘Hurry up and Wait’ by JimMY Pollard which aids in understanding why people with Huntington’s can behave in certain ways and offers useful solutions. The book is available from our shop.
If your situation is more complicated and potentially abusive or putting anyone (including you) in danger, please look at our fact sheet called Advice for people in a potentially abusive domestic situation which gives advice on how to stay safe and protected. Please contact us on 0151 331 5444 if you find yourself in an abusive situation for advice on what to do next.
Talking to others in a similar situation to yourself can be a massive help. You can find out if there is a local HDA branch, support group or carers group in your area or use our online message board to talk to other people facing similar challenges. If you are struggling with any aspect of managing behaviour, please contact us on 0151 331 5444 or email info@hda.org.uk. We’re here to help.