Coping Strategies For Communication

Although we are unable to stop the progression, we can manage the speech difficulties associated with HD, thus enabling the individual to maintain communication as long as possible. It is important to remember that the disease process can be as long as twenty years or more. Maintaining communication from the beginning is essential. Some professionals have described the late-stage HD patient as “locked in,” meaning that the individual is unable to communicate the most basic requests or desires despite relatively normal understanding of his or her surroundings. When people cannot control the muscles or find the words to express their own thoughts, it can be painful, frustrating and embarrassing for everyone.

Suggestions For Communications

  • Allow the person enough time to answer questions or express him/herself. Remember, it is not necessary to speak slowly yourself, since the person with HD generally understands well. He or she just needs additional time to respond.
  • Offer cues and prompts to get him or her started. Fill in words that may be on the tip of the tongue, but be sensitive about “putting words in someone’s mouth.”
  • Give choices. Rather than asking, “What do you want for dinner?” give specific choices like, “Do you want lasagna or spaghetti?” or, “Would you like Mexican or Japanese food?”
  • Break the task or instructions down into small steps. Remind yourself that most of our daily tasks are very complex activities.
  • If the person is confused, modify what you are saying by making it simpler and shorter.
  • If asking a question, phrase it in a “yes or no’ or a “this or that” format.
  • Ask the person to repeat what you did not understand; don’t fake it.
  • Ask them to give you the first letter of of a word you don’t understand or to spell the word.
  • Modify the steps of a request as the person becomes more impaired. Use simple words and short sentences.
  • Demonstrate what you are saying or use visual cues.
  • Alphabet boards, yes/no cards or other technical communication devices should be made available to every person with HD to allow for at least a simple method of communication.
  • Once a person with HD loses the ability to communicate verbally, do not stop talking to them. This can intensify the feelings of isolation that accompany losing speech.
  • Request speech therapy.