By Helen Giddins
Motor Neurone Disease (MND) is a progressive neurological condition. This means that symptoms gradually get worse over time.
MND affects the nerves (motor neurones) in the brain and spinal cord. These motor neurones tell your muscles what to do. They are involved in everyday activities such as speaking, walking, swallowing and breathing. As MND progresses, it leads to muscle weakness, wasting, and eventually paralysis.
While the exact cause of MND remains unclear, ongoing research continues to explore potential genetic, environmental, and lifestyle factors that may contribute to its development.
How Motor Neurone Disease Affects Communication
As MND advances, the communication challenges can become multifaceted and profound.
Speech Production
Many people with MND will experience a speech condition known as Dysarthria. Dysarthria presents as slurred or slow speech that can be difficult to understand.
This occurs because MND progressively weakens the muscles involved in articulation, phonation (voicing), and respiration (breathing).
Clear articulation becomes more difficult as the muscles controlling the lips, tongue, and jaw weaken, making it hard to pronounce words clearly. Phonation (voicing) issues arise due to the weakening of the vocal cords, leading to a soft, breathy, or strained voice.
Respiratory muscle involvement (breathing) further impacts speech production, as adequate breath support is necessary for volume and speech continuity.
Non-Verbal Communication Challenges
Non-verbal communication includes facial expressions, gestures, and body language. The loss of muscle function in the face can lead to a lack of facial expression, making it harder for individuals to convey emotions or reactions through facial cues.
Similarly, limb weakness or paralysis can restrict gestures and/or the ability to access commonly used communication aids (see below).
Cognitive and Linguistic Considerations
Around half of those diagnosed with MND will experience changes to thinking and behaviour. These cognitive impairments can influence language processing, decision-making, and the ability to formulate coherent speech – further complicating communication.
Whilst cognitive changes are usually mild and have little impact on day to day life, a small number of people may develop frontotemporal dementia (FTD), which is more severe and will need additional care and support.
Emotional and Psychological Impact
The communication difficulties associated with MND also have significant emotional and psychological repercussions. The frustration associated with communication and mobility difficulties can lead to social withdrawal, depression, and anxiety. The effort required to communicate effectively can also prove exhausting and individuals may become tired quickly.
Adjustments for Effective Communication with Someone with MND
Communicating with someone who has Motor Neurone Disease (MND) requires several adjustments to accommodate their evolving needs as the disease progresses.
These adjustments span from environmental modifications to the use of advanced communication aids, ensuring that interaction remains as effective as possible.
1. Environmental Modifications
- Quiet Environment: Reduce background noise to help the person with MND hear and be heard more clearly.
- Positioning: Ensure the person is comfortably positioned and has easy access to their communication devices or aids.
- Access needs: wheelchair access or specialist seating may need to be considered.
- Proper Lighting: Good lighting is crucial for lip-reading and seeing facial expressions.
- Access to electrical sockets: This may be necessary if a client is using an electronic AAC device to support communication.
2. Communication Strategies
- Allow More Time: Conversations may take longer. Speech may be effortful to produce and AAC users may require some time to respond using their electronic device or low tech communication aid. Be patient and give the person ample time to express themselves. Time for breaks will need to be considered.
- Active Listening: Pay close attention, listen carefully, and avoid interrupting. Nod or use simple acknowledgments to show you are engaged.
- Clarification: If you don’t understand something, ask for clarification or rephrasing in a respectful manner. Do not attempt to guess.
- Regular Breaks: communication can be effortful for a person with MND and is likely to result in fatigue. Regular breaks should be taken to allow the person to rest.
- Simple Sentences: if necessary (for example, if cognitive changes are evident), use clear and simple sentences to facilitate understanding.
- Yes/No Questions: If appropriate, frame questions that can be answered with a yes or no. This can make it easier and less effortful for the person to communicate.
- Repeat and Confirm: Repeat back what you understand to confirm accuracy.
3. Other Considerations
- Medication:meetings and court hearings may need to be scheduled around a client’s medication regime. Consideration will need to be given on how medication impacts their communication and levels of alertness.
- Remote Hearings: if there are access issues, or if travelling is difficult, a service user with MND may find it easier to attend a hearing remotely. Conversely, communication via a computer screen or telephone may prove more difficult.
- Emotional Regulation: Support to alleviate the frustration and anxiety associated with communication difficulties.
Augmentative and Alternative Communication (AAC) Tools
As the disease progresses, Augmentative and Alternative Communication (AAC) systems often become crucial. These range from low-tech solutions like alphabet boards and picture communication boards to high-tech devices that use eye-tracking technology or brain-computer interfaces to generate speech.
The implementation of AAC requires a tailored approach, considering the individual’s physical capabilities, cognitive function, and personal preferences. Regular reassessment and adjustments are necessary to ensure the AAC system remains effective as the individual’s condition evolves.
Involvement of Specialists
The Intermediary may need to contact relevant specialists, such as the service user’s Speech and Language Therapist or Occupational Therapist, to identify any adaptations that have proven useful for the client in the community. This information can be crucial to consider during court proceedings.
Education and Raising Awareness
Within the Intermediary Cooperative, we have several Intermediaries who are Speech and Language Therapists specialising in clients with neurological conditions. We are committed to raising awareness and educating people about neurological conditions, such as MND, and how communication can be facilitated. Please contact us if you are interested in arranging a bespoke training package.
In the meantime, if you would like more information about MND, please visit the MND Association website.
Final Words
In conclusion, the impact of MND on communication is profound and multifaceted, affecting both verbal and non-verbal modalities. Communication skills are likely to deteriorate, possibly even during the court proceedings. It is therefore, particularly important that a dynamic and ongoing approach to assessment is taken, and the Court is sensitive, and adapts to, a service user’s changing needs.
Need an Intermediary Assessment? Refer to TIC!
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Click here to visit our website and complete a simple referral form. You will receive a direct response from an Intermediary within 3 working days.