Management of Speech, Language and Communication Difficulties in Huntington’s Disease

Degenerative Neurological and Neuromuscular Disease

Hamilton, A., Ferm, U., et al. (2012).

Degenerative Neurological and Neuromuscular Disease, 2(1), 67-77.

This guideline provides recommendations for the management of communication needs of individuals with Huntington's disease. Since evidence pertaining to communication interventions is limited for individuals with Huntington's disease, recommendations are also based on consensus and clinical experience of the European Huntington's Disease Networks Speech and Language Therapy Standards of Care Working Group.

European Huntington's Disease Network Standards of Care Speech and Language Therapist Group






<p>Language assessment for individuals with Huntington's disease should include:</p> <ul> <li>processing and retention of information;</li> <li>comprehension of complex language;</li> <li>spontaneous speech;</li> <li>length of utterance, sentence structure, and grammatical accuracy;</li> <li>naming;</li> <li>perseveration; and</li> <li>reading and writing.</li> </ul> <p>Assessment should also consider the individual's communication skills (including strengths and needs), communication in varying environments, skills of the individual's communication partner, and emotional, psychological, and psychosocial impact of communication impairments, and timing and need for ongoing reassessment.</p>

<div>Given the progressive nature of Huntington's disease, ongoing assessment of communication and need for augmentative and alternative systems should be competed. Augmentative and alternative communication can be used with individuals with late-stage Huntington's disease. Consideration should be based on the individual's motivation, learning capacity, and previously learned skills. Education and training should be provided to conversational partners and multidisciplinary team members to maximize opportunities for engagement and communication.</div>

<div>Individuals with dysarthria associated with Huntington's disease should receive a speech assessment. Assessment should include evaluation of oral facial movements, respiratory function, coordination, and control and assessment of phonation, articulation, prosody, resonance and intelligibility.</div>

<div>Care partner training should begin with observation of the individual with Huntington's disease and his/her communication partners. In the mid stages of the disease, communication strategies regarding the communication environment and coping with cognitive changes should be provided.</div>

<div>Early referral to speech-language pathology services is preferable for individuals with Huntington's disease.</div>

<div>Given the progressive nature of Huntington's disease, individualized treatment approaches and therapeutic techniques should be considered to maintain communication skills as long as possible. In the early stages of Huntington's disease, dysarthria can be managed with a symptomatic approach. In the late stages of Huntington's disease, natural speech (with support and use of communication strategies) should be encouraged. Treatment focus should be on supporting participation in communication activities and limiting communication breakdowns.</div>