If you're a carer

If you are helping someone with Huntington’s to manage daily life, you may gradually be taking on the role of ‘carer’. Many people who look after a member of their family or a partner don’t see themselves as a ‘carer’ because first and foremost they are a son, daughter, partner or parent to the person with Huntington’s. As the disease progresses, however, the person with Huntington’s will need increasing amounts of support, and the caring role increases.

Caring can become difficult, tiring and stressful. This can have a big impact on relationships.

In addition, because of the genetic nature of the disease, some Huntington’s carers may may have cared for others in their family, or may be at risk of the disease themselves.

How you feel about your caring role will vary greatly depending on your individual circumstances, but all carers are likely to find that there are times when they struggle practically and emotionally.

  • Caring can be very isolating, partly because it is so demanding, but it is not an uncommon situation. Carers UK estimates that across the UK today 6.5 million people are carers, supporting a loved one who is older, disabled or seriously ill.
  • As a carer, it is important to do whatever you can to look after yourself. Many carers wait until they are at breaking point to seek help, but it is much better for the person you care for, as well as for you, to seek support before you reach that point.
  • Many carers have found it can help them to feel less isolated, and to get advice and support, by connecting with others in a similar situation, either in person or online. There are also various kinds of practical support that you can apply for.

In our Support for carers section, we explore some of the different kinds of support available, but a good starting point is Carers UK, the UK’s national membership charity for carers. It offers advice, support and a collective voice for carers. You can contact Carers UK via its advice line: 0808 808 7777.

Your local Specialist Huntington’s Disease Adviser (SHDA) can also give advice and support, as well as explaining the situation to other professionals involved, if they lack knowledge or experience of Huntington’s. We also have local branches and support groups and an online message board that enable people affected by Huntington’s to support each other.

Living with Huntington’s disease can be very difficult, for you as a carer, as well as for those who have it. The right support can make a big difference and we’re here to help.

Getting help and support

Support for carers

If you are looking after someone with Huntington’s, it is very important to do what you can to look after yourself, as well as the person you are caring for.

Managing communication difficulties

When we talk about the symptoms of Huntington’s, we tend to talk about physical and movement changes, cognitive changes and behavioural changes.

Managing challenging behaviour

Most carers of people who have Huntington’s will notice behaviour changes in the person they’re caring for.

Getting emotional support

Because Huntington’s is a rare condition, living with it can feel quite isolating at times. It can also be difficult to cope with all the changes it brings about.

Family stories