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.
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
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.
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.
There are many more strategies for managing behaviour in our fact sheet which looks at some common issues and solutions.
The books ‘Understanding Behaviour in Huntington’s Disease,’ by Jane Paulsen and ‘Hurry up and Wait’ by Jim Pollard are both very helpful in understanding why people with Huntington’s can behave in certain ways and offering useful solutions. They are both 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.
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.