Dysphagia In Developmental Disabilities "They Don't Read the Textbook" with Jen Biener

<p>What does it actually look like to assess swallowing difficulties in an adult who has eaten a certain way their entire life, and whose &quot;textbook&quot; 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.</p><p> </p><p><strong>In this episode we cover:</strong></p><ul><li>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</li><li>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</li><li>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</li><li>Choking risk assessment in this population, including the limitations of existing tools and the power of instrumental assessment as a biofeedback tool</li><li>How to set people up for success before and during instrumental swallowing studies </li><li>The importance of clinical language: writing what you observe, not what you assume, and why &quot;did not follow one-step commands&quot; is very different from &quot;cannot follow one-step commands&quot;</li><li>Assessment tools and approaches Jen recommends, including the Dysphagia Disorder Survey, the Choking Risk Assessment, and the Functional Communication Profile - Revised</li><li>Why there is so little research on adults with intellectual disabilities, and why this population is, in many ways, historically new </li></ul><p> </p><p><strong>The publication this episode is based on:</strong></p><p>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: <a href="https://pubmed.ncbi.nlm.nih.gov/38382915/">https://pubmed.ncbi.nlm.nih.gov/38382915/</a></p><p><em> </em></p><p><strong>Other resources mentioned in this episode:</strong></p><ul><li>Dysphagia Disorder Survey (DDS)  &amp; Dysphagia Management &amp; Staging Scale: <a href="https://sites.google.com/view/dysphagiaorg/the-dysphagia-disorder-survey">https://sites.google.com/view/dysphagiaorg/the-dysphagia-disorder-survey</a></li><li>Choking Risk Assessment &amp; Pneumonia Risk Assessment: <a href="https://pubmed.ncbi.nlm.nih.gov/28822297/">https://pubmed.ncbi.nlm.nih.gov/28822297/</a></li><li>Article on mealtime supports for people with ID: <a href="https://pubmed.ncbi.nlm.nih.gov/21988217/">https://pubmed.ncbi.nlm.nih.gov/21988217/</a></li><li>Functional Communication Profile — Revised: <a href="https://www.wpspublish.com/fcp-r-functional-communication-profile-revised">https://www.wpspublish.com/fcp-r-functional-communication-profile-revised</a></li></ul><p> </p><p>For clinical resources and evidence-based dysphagia education beyond the podcast, head to: <a href="http://www.dysphagiabites.com/">www.dysphagiabites.com</a></p>