Huntington’s disease affects not only movement, but also impairs a person’s ability to communicate. Studies have shown that 78 to 93 percent of patients with Huntington’s experience speech difficulties. Communication issues are more common in the later stages of the disease, although they also can be seen early on.
Types of communication issues
Communication is impaired in several ways in Huntington’s. Because the disease causes a loss of coordination in the throat muscles (dysarthria) responsible for speaking and breathing, speech changes such as hoarseness in the voice, slurred words, the inability to control speech volume, and inappropriate pauses between words, are common.
As the disease progresses, frontal regions of the brain may be damaged. This may interfere with speech organization, causing patients to appear to speak incoherently. The ability to process thoughts also may be affected. This means that although patients generally understand what is being said, they may take longer to respond in a conversation and struggle to translate their thoughts into words.
Huntington’s disease also causes changes in mood and personality, and this is reflected in communication difficulties. Patients may appear to be easily distracted during conversations, may become more apathetic and avoid conversations, and have a tendency to become fixated and repetitive on certain issues that seem important to them.
Strategies for improving communication
Following are some key tips to ease communication for those with Huntington’s disease:
- Reduce distractions during conversations. Try to speak in a quiet place, away from the television or noisy crowds.
- Speak slowly and talk about one thing at a time. This allows time for thought-processing and avoids “overloading” a person with too much information.
- Ask direct questions. Answering yes/no questions is much easier for those with Huntington’s because making decisions can be stressful.
- Use non-verbal communication. Hand gestures and facial expressions can be useful in getting your message across.
Having communication aids (also known as augmentative and alternative communication techniques, or AAC) are simple, effective methods to help those with Huntington’s convey their thoughts without having to speak. Examples include patients carrying personal introduction cards and having a chart where they can point to indicate hunger or mood.
Another example of a communication aid is the Talking Mat, which has been shown to benefit those with Huntington’s disease. The Talking Mat comes in the form of little pictures laid out on a physical mat or on a digital device such as a phone or tablet. The pictures are categorized into topics, options, and scales, allowing people to choose what they would like to talk about (topics), more specific questions on the topic (options). and their feelings on the subject (scales).
As speech deficits can occur randomly and unpredictably in Huntington’s, consulting with a speech and language therapist even before speech symptoms become obvious will allow for a proper speech assessment, which enables speech abilities to be tracked and early signs of impairments to be picked up.
Speech therapists can help identify areas of speech limitations in a patient and employ training methods such as breathing exercises (to help coordinate breath while talking, resulting in more consistent speech patterns). Therapists also can guide and educate patients, caregivers, family members, and friends on methods to optimize communication.
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