Managing communication and swallowing difficulties in motor neurone disease

Patients with motor neurone disease develop communication and swallowing difficulties; early involvement of a speech pathologist is essential for regular assessment of swallowing and optimisation of communication. The patient’s own voice can be recorded for a voice synthesiser while they are relatively well.

Difficulty swallowing may be due to poor lip seal, difficulty manipulating food within the mouth, poor chewing ability, difficulty triggering swallowing and inadequate airway protection, which can result in choking attacks, dehydration, weight loss, and aspiration pneumonitis or pneumonia.

An occupational therapist can assist with nutrition support planning and functional aids. A dietitian can assist in assessing nutritional requirements and modifying nutrition as the disease progresses. Specialist services should instigate early and ongoing discussion with patients and carers about interventional nutrition support and the eventual withdrawal of this support. Referral to a gastroenterologist at the onset of swallowing difficulties ensures monitoring and timely placement of medically assisted nutritional devices such as a percutaneous endoscopic gastrostomy (PEG) tube, if appropriate.

Some patients with motor neurone disease may choose not to start nutritional interventions, while others may request withdrawal of medically assisted nutrition and hydration in the late stages of their illness—see Nutrition and hydration in the last days of life. For management of these various options, seek specialist palliative care advice.

The combination of muscle weakness and reduced swallowing ability can result in dribbling, drooling and an increased risk of choking attacks. Educate patients and their carer(s) on appropriate actions to alleviate choking attacks if they occur. Management of excessive saliva depends on whether saliva is thick and tenacious, or thin and of ‘normal’ consistency. For thick tenacious saliva, patients may benefit from:

• adequate hydration
• drinking dark grape juice—200 mL twice daily, orally or administered via PEG tube
• inhaling nebulised sodium chloride 0.9% solution to moisten secretions and aid expectoration
• having their room humidified.

For thin saliva of normal consistency, prompt the patient to clean up secretions. Drug treatment may be trialled to dry excess secretions—see the Neurology guidelines for dosage regimens.