Managing communication difficulties

When we talk about the symptoms of Huntington’s, we tend to talk about physical and movement changes, cognitive changes (difficulties with planning and thinking) and behavioural changes. All of these have an impact of the way someone with Huntington’s communicates.

  • Physical Changes – people with Huntington’s can’t control the muscles used for speech as well as they could before. You might notice that their speech is a little slurred, or they are struggling with volume control.
  • Cognitive changes – changes in the brain usually mean that people struggle to put their thoughts into words. Often they find it hard to start a conversation. They may become focused on one topic and not be able to move on from it (this is particularly common if there is a change to the normal daily routine e.g. if there is a clinic appointment and they are worried about getting there). They may repeat certain words that seem important to them.
  • Emotionally – they may become more apathetic; they simply don’t have the same ‘get up and go’ anymore, and this can affect their communication skills. If someone feels anxious or depressed, whether due to Huntington’s or another reason, it’s also likely to have an impact on their communication. They may find it hard to be in a group of people which may mean they avoid social situations, start to withdraw and feel socially isolated. This can create a cycle of decreasing communication.

When we break down the issues affecting communication like this, it can help us think about how we can support people to communicate.

Key tips around communication are:

  • Talk about one thing at a time. Keep it simple and don’t overload the person you’re caring for with information. Sticking to a single topic helps people with Huntington’s to process information and respond. Use short sentences and even pictures or visual cues, such as showing them an item you’re offering them.
  • Give more time. Remember it takes time for people with Huntington’s to process information and form a response. Ask a question, then wait for an answer – don’t interrupt the thought process by repeating your question or putting it another way.
  • Avoid distractions. Try and focus on the conversation. Get the person’s attention and then tell them what you would like to say. Avoid talking to someone if the TV is on. Where possible, keep them away from noise and hubbub when talking to them. Don’t expect them to walk and talk or eat and talk at the same time. This can be hard as we are used to using meals as a time for conversation. It may take a bit of time to see what works best for them: they may, for example, enjoy going for a coffee and a cake but want to chat first, then have a quiet time to eat and drink, then the conversation can be picked up again.
  • Limit choices. Ask closed questions (i.e. ones that require a ‘yes’ or ‘no’ answer) so they don’t have to search for the answer. This may feel counterintuitive as we think of choice as being empowering, but for people with Huntington’s making a choice can often feel difficult and stressful. It’s the same for most of us; we would prefer a multiple choice test than having to write an essay - it’s much easier to respond when the answer is already there.
  • Listen. It can take a lot of effort for people with Huntington’s to speak, so try to listen to what they’re saying. This can become tricky if there is a lot of repetition.

A speech and language therapist (SALT) can also help with difficulties with communicating, as well as eating, drinking or swallowing. You can get a referral to a SALT through your GP or a specialist Huntington’s clinic.

For more information on managing communication difficulties, download our fact sheet.