Dysphagia & Quality of Life: The Never-Ending Balancing Act.

During the first few weeks of National Dysphagia Awareness Month, I gave an overview of the impacts of dysphagia and its implications on health, safety, and overall well-being for those with ID across their lifespan. In this issue, I’ll focus on vital aspects of the multidisciplinary team in ensuring that individuals with ID and dysphagia are experiencing the highest quality of life possible. With this lens, I’ll also explore the dynamics of feeding vs. swallowing disorders often encountered in this population. Finally, I’ll review some specific assessment and treatment options often used to address the dysphagia care needs of those we serve.

A comprehensive dysphagia team: We are all a vital link in the chain!

Although most settings provide minimal dysphagia care services to persons with ID, a unique feature of caring for those with intellectual disability and dysphagia who live at our SSLCs is the opportunity to work with such a dynamic team of professionals. While the speech-language pathologist typically takes the lead in dysphagia care, other members vital to this interdisciplinary team (IDT) include occupational and physical therapists, physicians, dieticians, nurses, nursing case managers, and behavioral health specialists. Despite the valuable insights of these professionals, not all are trained in dysphagia evaluation and treatment. As such, collaboration amongst all professionals with specialization in dysphagia care is essential to ensure proper identification of feeding/swallowing problems and their associated etiologies.

“Monitoring complex chronic and acute issues in those with ID requires periodic interdisciplinary screening to determine functional status for adequacy of feeding and swallowing skills”– Sheppard, 1991

Feeding vs. swallowing disorders: Can we solve this puzzle?

Persons with ID often face difficulties at mealtime, ranging from minimal to significant problems throughout their lifespan. Sometimes, feeding disorders and dysphagia may go together and can cause a variety of challenges. Other times, these two disorders are separate and must be addressed differently. This is the puzzle that dysphagia clinicians are charged to solve in identifying what symptoms are attributed to feeding versus dysphagia.

In my experience, neither clinical nor instrumental assessments are sufficient to correctly identify feeding disorders vs. swallowing impairments without information on overall mealtime management, as this knowledge is essential to determine how the environment impacts safe oral intake. Additionally, there is little evidence of a direct correlation between the individual’s cognitive status and feeding or swallowing efficiency. Namely, some individuals with severe ID may be able to self-feed or swallow without difficulty, while others with mild ID may have numerous and varied feeding and swallowing impairments.

Feeding Disorders: Issues involving feeding disorders include a broad range of eating activities that may or may not accompany difficulty swallowing food or liquid. Feeding disorders in adults with ID are characterized by difficulty getting food from the plate to the mouth. However, other behaviors such as food refusal, disruptive mealtime behaviors, extreme selectivity in food preferences, or the absence of self-feeding skills are also classified as feeding disorders [1].

Dysphagia: Swallowing disorders can result from difficulties in one or more of the phases of swallowing, which include the oral preparatory phase, oral phase, pharyngeal phase, and esophageal phase. Impairment in any or all these phases may or may not lead to airway protection issues such as penetration, aspiration, or post-swallow residue patterns. Because each stage is independent, each one must be carefully assessed to understand the full extent of the swallowing disorder in that individual [2].

Let’s keep putting the pieces together!

Although we strive to support the best quality of life for each person with an intellectual disability, the reality is that individuals with ID and dysphagia are severely underserved in this country and worldwide. Reasons for this include a dire lack of professionals with specialized training to work with this population, poor funding for research to reduce risks of choking and pneumonia, and significant gaps in the research literature on how feeding skills and swallowing physiology change in those with ID as they age. As such, much more work is needed to provide a complete picture of the dysphagia care needs in this vulnerable group of people!

The scoop of the week: References

  1. Arvedson JC. Assessment of pediatric dysphagia and feeding disorders: Clinical and instrumental approaches. Dev Disabil Res Rev 2008; 14(2): 118-27.
  2. Linscheid P, Seboek D, Nylén E, Langer I, Schlatter M, Becker KL. In vitro and in vivo calcitonin-1 gene expression in parenchymal cells: a novel product of human adipose tissue. Endocrinology 2003; 144(12): 5578-84.
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