Caring for someone with motor neurone disease at the end of life

Motor neurone disease (MND) is a fatal, rapidly progressing disease that affects the brain and spinal cord. MND attacks the nerves that control movement so muscles no longer work. It does not usually affect senses, for example sight, sound and touch.

There is no cure for MND, but there are interventions such as non-invasive ventilation and gastrostomy that can help manage symptoms. A third of people with MND die within a year of diagnosis, and more than half die within two years.

Up to half of all people with MND will be affected by some degree of cognitive or behavioural change. A proportion will be diagnosed with frontotemporal dementia (FTD). Some people will experience cognitive changes, or be diagnosed with FTD, before they are even diagnosed with MND. These changes can affect behaviour, decision-making and the way they use language.

How can MND affect people at the palliative and end of life stage?

MND affects each person differently, so symptoms, progression and what to expect at the palliative and end of life stage can vary from person to person. Some of the symptoms that may affect a person in the later stages of MND are listed below, but it’s important to note that these symptoms could occur throughout the course of the disease. 

  • Muscle weakness: Widespread muscle wasting will affect a person’s mobility and their ability to undertake daily tasks. Most people with MND eventually need to use a wheelchair and will require support from carers. 
  • Respiratory problems: Most people with MND will experience breathing difficulties late in the course of their disease, because their diaphragm and accessory muscles will be affected. Some people may choose to have assisted ventilation. More information can be found on the Motor Neurone Disease Association’s website  .
  • Dysphagia: Weakness of the bulbar muscles (tongue, mouth, and throat muscles) can lead to swallowing problems. Eating and drinking can become more difficult, which may lead to episodes of coughing and sometimes to choking and aspiration. Some people may choose to have a gastrostomy. More information can be found on the Motor Neurone Disease Association’s website   . 
  • Dysarthria: Bulbar weakness may lead to slurred or quiet speech. In rare cases, the person may lose their speech completely. People with MND may use a range of alternative and augmentative communication strategies and devices. More information can be found on the Motor Neurone Disease Association’s website   .
  • Pain: People with MND may experience pain, usually as a result of muscle cramps or spasticity.

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