Motor neurone disease may affect speech, communication and swallowing. It may also affect thinking and behavior. Speech and language therapists (SLTs) are a key part of the multidisciplinary health and care team supporting people living with motor neuron disease and their families and carers. They promote better quality of life both for people with the disease and their loved ones. They support people with changes in speech and communication, including through the use of a range of technologies to support or replace spoken communication. They support people to eat, drink and swallow safely. SLTs can also support the determination of mental capacity and contribute to support decision-making for those people living with motor neuron disease who experience cognitive and behavioral changes.
What Is Motor Neuron Disease?
Motor neuron disease (MND) is a progressive neurological condition. It describes a group of diseases that affect the nerves (motor neurons) in the brain and spinal cord that tell muscles what to do. In someone with MND, messages from these nerves gradually stop reaching the muscles, leading them to weaken, stiffen and waste. MND can affect how a person walks, talks, eats, drinks and breathes. Some people also experience changes to their thinking and behavior. However, everyone is affected differently by MND.so individualized assessments and regular reviews of the support needed are required.
Impact On Speech, Communication, Swallowing, Thinking And Behavior
Speech And Communication
• Speech problems (dysarthria) occur in more than 80% of people living with MND as the disease progresses.
• Approximately one third of people with MND experience bulbar motor neuron disease, a particularly aggressive form
affecting speech and swallowing muscles early in the disease process.
• Speech can deteriorate over a period of a few months and is cited by people living with MND as one of the most
problematic symptoms.
• There is an association between early augmentative and alternative communication (AAC) intervention for people
living with the disease and higher quality of life for patients and carers.
• Deterioration in intelligibility does not correlate with a perceived deterioration in social interaction.
• Respiratory weakness sometimes means that a non-invasive ventilation (NIV) face mask is worn, and this can
compromise intelligibility.
• Fatigue is a significant symptom of MND and this can cause an individual’s speech to deteriorate as the day
progresses.
Eating, Drinking And Swallowing
• Swallowing problems (dysphagia) occur in more than 80% of people living with MND as the disease progresses.
• Swallowing problems put people at risk of choking (asphyxiation), chest infections (aspiration pneumonia), malnutrition
and dehydration.
• Pleasure from eating and drinking may be reduced, which can impact on patients’ enjoyment of social occasions,
which often involve meals and drinks.
• Drooling is common in people with MND due to difficulties in managing saliva.
• Adequate adjustments to diet and changes to posture to preserve oral feeding can postpone the need for being fed by
tube. Adjustments can include changes to the consistency of food, fluids and medication.
Thinking And Behavior
• Around 35% of people with MND experience mild cognitive change – in other words, changes in thinking and behavior. A further 15% show signs of frontotemporal dementia. These changes can affect planning and problem-solving or lead to impulsive behavior.
The Role Of Speech And Language Therapists
SLTs play a key role in supporting people living with MND and their families and carers, including in preparing for changes
in speech, communication and swallowing. They can also contribute to support decision-making.
Communication: SLTs support all aspects of communication and changes to communication in partnership with people
living with MND. They also help people prepare for, and support the potential transition to, augmentative and alternative
communication (AAC). This may include anticipatory voice or message banking. AAC involves a range of technologies to
support or replace spoken communication, including: writing, gestures, signing, symbols and pictures, communication
boards, tablets and computers. How people access these systems physically is an important consideration (for example,
via switches or using eye-gaze technology). Regular reviews of AAC are required because as an individual’s condition
progresses, their physical ability to access a device may change.
Swallowing: SLTs help to minimize the physical, emotional and psychological effects of dysphagia. They promote quality
of life and safety in eating, drinking and swallowing and saliva management. They also collaborate with other members of
the multidisciplinary team such as dietitians, doctors and nurses to help advice patients when feeding tube placement
would be appropriate and timely. Due to fatigue, an individual’s swallow may deteriorate as the day progresses.
Decision-making: SLTs can contribute to supported decision-making and the determination of mental capacity where
changes to cognition and behavior impact on thinking or give the impression of impacting on thinking. This promotes
better planning and decision-making and reduces the risk of people being perceived as lacking capacity due to their
communication needs not being appropriately supported.