People with a Learning Disability and Dysphagia: A Cinderella Population?

Abstract

Dysphagia has been linked to many medical conditions but most studies are performed on mainstream populations, i.e., not those with dementia or other conditions with intellectual disability (U.S.) or learning disability (UK). Why this is so is perhaps rooted in arcane attitudes about participation in research and informed consent of so-called vulnerable populations, in addition to the usual research challenges that beset us all. This lack of knowledge undermines service planning and health-care provision for a considerable group of people who make up an increasing part of our caseloads. The signs and symptoms of swallowing problems in this population include coughing on food or drink or saliva accumulation, drooling, choking, difficulty triggering a swallow, chest infections, weight loss, dehydration, malnutrition, aversion to food, behavior changes, difficulties chewing, rushing food or long mealtimes, and difficulty taking medication. The problem with the learning disability population is that often these signs are attributed to the learning disability, not to a fundamental problem with the biomechanics of swallowing, i.e., diagnostic overshadowing. Health risks for people with learning disabilities include chest infections, chronic lung disease, asphyxia, obstructive sleep apnea, and hypoxemia in oral feeding [1–3]. Severe, chronic chest problems or choking can result in death [4]. Respiratory infection is a very common cause of death for people with learning disabilities. One study cites respiratory infection as a cause of death for 52% of adults with a learning disability [5]. Clearly there is overlap with our traditional world of dysphagia. There are no reliable reports on the prevalence of dysphagia in children or adults with learning disabilities. There are estimates of the proportion of people with learning disabilities who have dysphagia within restricted populations. These estimates vary from 36% [6] based on speech-language pathology caseload reports to 73% of an in inpatient population over 10 years ago [1]. More recently in the UK the National Patient Safety Agency [7] has identified dysphagia as one of five key risk areas for people with learning disabilities. They also identified that illness and disease in people with learning disabilities can be misor undiagnosed. When considering dysphagia within this framework, it should be acknowledged that estimates of the prevalence of dysphagia do not adequately represent true prevalence figures. In people with cerebral palsy, dysphagia is reported to be widespread, particularly in those who have profound and multiple learning disabilities. Again, figures vary due to different methodologies and different populations, but it P. Leslie (&) Communication Science and Disorders, University of Pittsburgh, 4033 Forbes Tower, Pittsburgh, Pennslyvania 15260, USA e-mail: pleslie@pitt.edu