Communication Strategies for those with Huntington's disease
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:
- impaired respiration for speaking
- hoarse and strained vocal quality
- inappropriate loudness and rate
- imprecise articulation
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:
- initiating conversations
- spontaneity in communication
- putting thoughts into words
- a reduced number of words available to the person
- limited ability to respond within a conversation
- understanding complex information
- slow response time
- impaired skills in reading and writing, ranging from physical to comprehension difficulties.
Persons with HD also have problems:
- learning new information and new skills
- reduced short term memory skills
- poor attention and concentration abilities
- lack of ability to organize, reason and problem solve.
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:
- Speak Slowly
- Repeat or Re-phrase the message
- Simplify the Message-Offer Cues
- Try to Gain Topic Knowledge
- Spell Part of the Message
- Use Yes/No Questions
- Refocus Person on Topic
- Monitor Behavior and Provide Feedback
Some additional strategies are:
- Provide a Predictable Environment
- Allow Adequate Time for
- Communication
- Reduce Distractions
- Use Communication Aids
- Monitor Listening and Attending ability
- Provide and Ask for Feedback
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:
- Get to Know the Person
- Keep the Person Informed
- Be Innovative & Perceptive
- Establish a Routine for Care
- Recognize and Use Gestures and Facial Expressions as Communication tools
- Inform Others of Your Strategies
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.
