The person with HD who enters a long-term care facility or who is in your care at home has already experienced a tremendous number of losses. He has already lost his ability to drive a car, to manage his finances and to relate to his family as he did in the past. As the disease progresses, more losses will occur. If this person saw his parent or another relative in the later stages of HD, he has an idea of what is in store for him. No wonder he may seem angry or depressed or uncommunicative much of the time!

For the person with HD to keep control of what's done to and for him requires enormous effort. To express his feelings and needs is a struggle of monumental proportions. There are many ways we exert some degree of control over our surroundings. However, HD has entangled every one of them. Difficulty in speaking makes it hard to clearly state wishes and needs. Anticipating the future and planning any activity is hindered by the inability to organize information. Undertaking even the simplest movement is hampered by trouble getting started. His capacity for hope that he can maintain some control is compromised by periods of depression and even more losses. If you remember the struggle he goes through, you will understand that every time he freely chooses which shirt he'll wear, what time he'll get out of bed, or how he'd like his eggs cooked, it is a significant victory in his great struggle to control his world. Help him do it!

SPEAKING... AND LISTENING!

Obviously, nothing is more important in your relationship with the person for whom you're caring than communicating with one another. This becomes more and more important as it becomes more and more difficult. The movement disorder affects speech in several ways. In the mid-stages of HD, people lose precision in making sounds, control of the volume of the sounds they make, and coordination of the speech and breathing mechanisms. This creates speech that is varied in volume, interrupted by grunting or breathing sounds, and hard to understand. In the most advanced stages, people express their range of needs and emotions with a few intelligible words or sounds.

Caregiver Tips Have the person with HD: Slow down, especially if his speech has a "racing" quality to it. Repeat/rephrase. Say the main word. Spell the word. Write the word, even if he can write only a few letters. Show you. You, the caregiver should: Try to rephrase the main idea. Use short sentences. Ask for feedback. Allow plenty of time. Wait... for up to a few minutes... for a reply. Try not to repeat or rephrase a question while you're waiting for a response. Use touch to help keep him focused on the conversation. Ask for help from others when needed. Never pretend to understand! Consider using a simple communication board. The family can: Make a scrapbook or memory book. Tell you about facial expressions or phrases that they understand. Continue to call or write even if he cannot respond clearly.

Just as the movement disorder affects speech, the cognitive disorder affects the content of what is said. The ability to form ideas, organize thoughts, and present them in an orderly sequence is compromised in HD. Some people have difficulty starting a conversation, staying on the topic, or switching from one topic to another. Some may get stuck on one topic and have difficulty getting off it. As clear speech becomes more difficult, it takes great effort for people with HD to carry on a conversation. They will have a tendency to rely on a very small vocabulary of more easily understood words. This allows you to take on a more active role in a conversation, picking up on those key words, anticipating the idea, and expanding on it on his behalf. At the point where it is extremely difficult to be understood, some people simply stop talking. Your familiarity with a persons likes, dislikes, career, interests, hobbies, and relatives will keep the conversation going or allow you to become his "interpreter" with others. It can be humiliating and frustrating for the person with HD, and embarrassing for you, when you have difficulty understanding his words. One way to show him respect is to put the burden of understanding firmly on you. Ask him for clarification. Ask his permission: "Do you mind if I repeat your words to you from time to time so you will know how I'm doing?" Communication boards are commonly introduced to people who are having difficulty being understood. As well-intended as they may be, boards are not often adopted by people with HD as an alternative form of communication. Speaking, as impaired as it is, is easier than learning to use the unfamiliar board. As with other adaptive devices such as helmets and wheelchairs, introducing the communication board early, before it is actually needed, gives the user more time to learn how to use it, practice with it, grow fluent in its use, and possibly adopt it.

Some families find it helpful to assemble a book or picture album full of photographs that represent his interests, hobbies, family, career, and preferences. Since non-family caregivers may first meet him when he has difficulty expressing himself or recalling events from the past, the album serves two purposes. First, the album is a communication aid which allows him or you to point to pictures when you don't understand each other. Second, it serves as a treasury of interests, children, grandchildren, relatives, hobbies, achievements, pets, home or apartment, and favourite sports teams so you can better know who this person is. Simply knowing the sports teams he rooted for in past years can be the basis for hundreds of conversations in your years together.

Please remember that people with HD can comprehend our speech and understand all that's going on around them to a far greater degree than most people may at first suspect. How effectively they communicate through spoken words is not an accurate predictor of how well they understand what you say.

Family members and caregivers agree that people, even in the most advanced stages of HD, somehow manage to communicate with their caregivers very effectively through facial expressions, eye gazes, and other subtle movements that may only be understood by those closest to them. Look and listen carefully!

IN SUMMARY...

HD impairs communication in many ways. Speech is affected. The ability to organize thoughts and present them in an orderly way is compromised. Sometimes individuals with HD speak to you through the nonverbal messages of anger, withdrawal, and short temper. Remember that the messages are there for you. To communicate you will need to develop skills in decoding both verbal and nonverbal messages to you and others around.