Nutritional support for patients with intellectual disability and nutrition/dysphagia disorders in community care

Abstract

Patients with intellectual disability and neurological handicaps associated with swallowing difficulties are vulnerable to dehydration and undernutrition. Some patients are severely undernourished, a condition which is usually associated with recurrent food aspiration and respiratory infections. Underweight patients are usually provided with adequate dietary protein by carers: their low energy intakes reflect inadequate intakes of fat and carbohydrate. Many patients gain weight following the provision of easily assimilated energy-dense fat- and sugar-containing foods. Where these measures fail, the provision of a percutaneous endoscopic gastrostomy (PEG) tube may be life-saving. Optimal supervision of patients with severe nutrition/dysphagia problems requires a support network linking carers at home or in community care facilities with the primary health care team and the local district general hospital.

People with intellectual disabilities and dysphagia

“…In a study of 318 patients at a large hospital for people with intellectual disabilities and 99 living in the community, over 60% of children and adults with intellectual and neurological handicaps (usually cerebral palsy) were underweight (body mass index (BMI) 20 or less) as a result of swallowing difficulties [10]. In a study of adults with dysphagia where risks were reported based on clinical, videofluoroscopic and case history information, 67/99 (67.7%)…”

“…A prospective longitudinal controlled and nonrandomised (quasi-experimental) trial using an occlusal orthotic appliance for the mandibular arch in adults with Down syndrome to increase inter-arch contacts found that increasing the number of posterior functional units (PFUs) led to a decrease in bolus particle size, to fewer masticatory cycles needed to produce a bolus ready for swallowing and to a decrease in the occurrence of food refusal, while mean chewing frequency did not vary [46]. A fluid programme aimed at providing 2.5 litres of fluid daily for patients with nutrition/dysphagia disorders led to an immediate fall in acute hospital admissions with hypematraemic dehydration [10]. Finally, an intervention in an educational setting found that a combined dysphagia treatment and behaviour management program was more effective than either program used alone for target feeding skills in children with intellectual disabilities [45].…”

“…Aspiration pneumonia is considered by many to be the main complication of dysphagia and is of significant concern due to its link with subsequent morbidity and mortality in people with intellectual disabilities [1,2,3,4]. Other health complications include choking and airway blockage [5,6,7] and compromised nutritional status and dehydration [8,9,10,11,12]. In addition, urinary tract infections, headaches, constipation, oesophagitis and reduced ability to combat infections have all been associated with dysphagia [13,14,15].…”

Should they have a percutaneous endoscopic gastrostomy? The importance of assessing decision-making capacity and the central role of a multidisciplinary team

“…8 Other diffi culties with eating and drinking can occur as result of psychological issues, physical restrictions, poor dentition or behavioural problems. 4,6,9,10 The consequences of diffi culties with eating and drinking can be serious and potentially life threatening. If left unrecognised or untreated, dysphagia can lead to choking and aspiration pneumonia.…”

“…3,4 Estimates of the prevalence of dysphagia in older adults range from 15% of those living in the community 3 to 40-60% of those living in a care home. 4 Dysphagia also occurs in younger populations such as those with neurodegenerative disorders, 5 intellectual and developmental disabilities, 6 acquired brain injuries such as stroke 7 and those being treated for cancer, in particular head and neck cancers. 8 Other diffi culties with eating and drinking can occur as result of psychological issues, physical restrictions, poor dentition or behavioural problems.…”