Communication challenges in a patient with Huntington's disease

As Huntington's disease progresses, you may find it increasingly difficult to communicate with the affected individual. You may not understand what the person is trying to say to you. Or, it may seem that he or she does not understand you. Frustration and angry outbursts may accompany communication problems.

Problems with communication vary in type and severity among individuals with Huntington's disease. Be aware that these problems can be particularly scary, frustrating, embarrassing and isolating for the affected person. Common speech-related problems include:

• Weakness and inability to coordinate the lips, tongue and throat
• Disruption in muscle movements that coordinate speech
• Talking too slow or too fast
• Difficulty putting thoughts into words
• Incorrect pronunciation of words
• Inability to initiate conversation
• Inappropriate loudness
• Hoarse or strained voice
• Replying in only one or two words
• Repeating words and phrases
• Stuttering
• Trouble understanding information
• Difficulty with reading and writing

Your understanding, patience, sensitivity and creativity can help ease communication problems. Be aware of your body language and what it says to the patient. Without saying a word, you may be communicating frustration, impatience and displeasure. Try to keep your body language positive and open. Also, keep in mind that many people with Huntington's disease stop initiating conversation, therefore, you will need to take a more active role in communication.

Tips for better communication

1. Realize that you are responsible for managing the conversation.
2. Reduce noise and other distractions such as groups, radios and TVs.
3. Speak simply and try to stick to familiar topics.
4. If you feel that the person didn't understand you, repeat or rephrase your words.
5. Be patient when the person is trying to speak and give him or her plenty of time to respond. Offer one or two cue words, if necessary, but be careful not to speak for him or her. Ask the person to describe what he or she is trying to say, if he or she can't think of the word.
6. If you don't understand what the person has said, as for clarification.
7. When necessary, ask the individual to speak more slowly, repeat words or sentences, or rephrase sentences.
8. Encourage the individual to speak louder and use gestures.
9. Pay attention to body language-gestures, facial expressions, cues.
10. If the person is having difficulty stating or deciding what he or she wants, give specific choices. For example, rather than ask "Where do you want to go out to eat?," you can ask "Would you like Chinese or Mexican food?"
11. If the individual is having severe communication problems, technical communication devices can help, as well as alphabet boards, word boards, picture boards, and signal or yes-no cards.
12. Communication may deteriorate to the point where you can no longer understand the person at all. You can help prevent feelings of isolation and despair by continuing to talk to him or her.

If communication problems are too frustrating and upsetting, a speech-language pathologist can help. Speech-language pathologists can work with individuals at every stage of Huntington's disease.