Communication Strategies for those with Huntington's disease

Jeff Searle, MS, Department of Hearing and Speech
Kansas University Medical Center

Huntington's disease affects many skills which are necessary for effective communication. Disturbances of speech production, or the mechanics of speaking, include:

Cognitive language skills, or the thought process we need in order to formulate what we want to say, are also affected by the disease. Difficulties include such things as:

Persons with HD also have problems:

Because Huntington's Disease is a degenerative brain disorder, these difficulties occur randomly as the disease progresses. This unpredictability can be extremely frustrating for the person. For example, they may make a request clearly at one moment but have tremendous difficulty articulating the same request only a few seconds later.

As a caregiver, it is important to understand that the person has no control over this; they are not being stubborn or making a conscious choice not to remember or repeat a task. It is the degenerative unpredictable nature of Huntington's disease that is the root of the problem.

Strategies for Communication

The principal guide-line in achieving effective communication is for the listener to consciously accept the responsibility for the conversation exchange. Because of the many deficits which frequently occur, the person with HD often needs to rely on external cues and guidance from the listener to achieve communication. It is also important to realize that while you accept the responsibility for the exchange, you must not control the conversation.

When working with a person with Huntington's disease who has communication difficulties, it is recommended that you speak with a speech/language pathologist to help you implement, monitor and adjust the following strategies:

Some additional strategies are:

Strategies for Communication During Advanced Stages of Disease

An individual in the advanced stages of Huntington's disease may well be non-verbal, yet interacting with another human being may be the only connection the person has with his/her environment. One of the biggest mistakes you can make is to assume that because a person has lost the ability to speak they have also lost the ability to understand. We know that persons in the later stages of the disease have a high degree of comprehension of ordinary conversation, therefore, maintaining communication at any level during this stage is extremely important .The following strategies will help you in your efforts:
Individuals in the advanced stages of the Disease still have much to share. It is the caregivers' responsibility to see that non-verbal persons remain in touch with their environment and those around them. It can make an enormous difference to that person's quality of life if they feel connected and affirmed as an individual.

Return to the introduction page of Caring for People with Huntington's Disease
KUMC Pulse This home page is supported by the Department of Neurology at the Kansas University Medical Center and by the Huntington's disease support groups.
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