E09 Dysphagia In Developmental Disabilities "They Don't Read the Textbook" with Jen Biener
Dysphagia Research BitesShow Notes
What does it actually look like to assess swallowing difficulties in an adult who has eaten a certain way their entire life, and whose "textbook" may look nothing like yours? In this episode of Dysphagia Research Bites, Chantelle sits down with Jen Biener, a speech-language pathologist specialising in adults with developmental disabilities, to dig into a Dutch retrospective study on the prevalence and associated factors of swallowing difficulties in adults with intellectual disabilities aged 50 and over — and to unpack what it really means to assess and support this often-overlooked population.
In this episode we cover: Why the terminology we use — dysphagia vs. feeding and swallowing difficulties — matters clinically and in research, and why both terms have a place depending on the setting How to conduct a meaningful mealtime assessment, including the value of observing familiar caregivers feeding the person rather than jumping straight to a formal evaluation Why mealtime dependency needs to be understood differently in people who have always been dependent for feeding, compared to someone who acquired that dependency after a stroke Choking risk assessment in this population, including the limitations of existing tools and the power of instrumental assessment as a biofeedback tool How to set people up for success before and during instrumental swallowing studies The importance of clinical language: writing what you observe, not what you assume, and why "did not follow one-step commands" is very different from "cannot follow one-step commands" Assessment tools and approaches Jen recommends, including the Dysphagia Disorder Survey, the Choking Risk Assessment, and the Functional Communication Profile - Revised Why there is so little research on adults with intellectual disabilities, and why this population is, in many ways, historically new
The publication this episode is based on: Sanders KJV, Elbers RG, Bastiaanse LP, Echteld MA, Evenhuis HM, Festen DAM. Prevalence of swallowing difficulties and associated factors in older people with intellectual disabilities. J Appl Res Intellectual Disability. 2024 May;37(3):e13209. doi: 10.1111/jar.13209. PMID: 38382915: https://pubmed.ncbi.nlm.nih.gov/38382915/
Other resources mentioned in this episode: Dysphagia Disorder Survey (DDS) & Dysphagia Management & Staging Scale: https://sites.google.com/view/dysphagiaorg/the-dysphagia-disorder-survey Choking Risk Assessment & Pneumonia Risk Assessment: https://pubmed.ncbi.nlm.nih.gov/28822297/ Article on mealtime supports for people with ID: https://pubmed.ncbi.nlm.nih.gov/21988217/ Functional Communication Profile — Revised: https://www.wpspublish.com/fcp-r-functional-communication-profile-revised
For comprehensive evidence-based dysphagia education beyond the podcast, head to: https://www.dysphagiabites.com/clinical-swallow-evaluation-course
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