What does evidence-based practice look like when the disease is progressive, fatal, and relentlessly complex?

This week on Speech Talk, Emily and Eva discuss clinical management of Huntington’s disease in long-term and residential care settings. Using a comprehensive 2007 primer for speech-language pathologists, we explore dysphagia progression, dysarthria, AAC challenges, behavioral supports, staff training, and the importance of early education.

We also reflect on real-world clinical decision making with a late-stage patient — including thickened liquids, unintelligible speech, low-tech and high tech AAC, impulsivity, weight loss, and the emotional weight of progressive decline. Because sometimes evidence-based practice isn’t about fixing — it’s about guiding, adapting, and supporting with intention.

Note to our listeners: Your headphones are not broken, the audio on this episode is a little funky (all Emily's fault). It is still worth a listen and we promise it won't happen again :)

Citations

Klasner, E. R., & Yorkston, K. M. (2007). A primer for speech-language pathologists managing clients with Huntington’s disease in a residential care facility. Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders, 17(2), 59–64. https://pmc.ncbi.nlm.nih.gov/articles/PMC4958906/

George Huntington (1872). On chorea. The Medical and Surgical Reporter.

Huntington’s Disease Society of America. History of Huntington’s Disease. https://hdsa.org/what-is-hd/history-and-genetics-of-huntingtons-disease/history-of-huntingtons-disease/

BBC News. (2024). Experimental gene therapy slows progression of Huntington’s disease. https://www.bbc.com/news/articles/cevz13xkxpro

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