Communicating with a person with MND

Motor neurone disease (MND) is a progressive and terminal disease that attacks the motor neurones, or nerves, in the brain and spinal cord. This information is for you if you’re a care worker – someone who is paid to provide care for people who are unable to look after their own care needs.

If a person with MND has weak muscles in the lower face, jaw, tongue and throat (bulbar muscles), this can affect speech. Speech problems are known as dysarthria.

It may take great effort for a person with MND to communicate, so it’s important to make it as easy as possible for them. A speech and language therapist can assess the person’s needs, provide therapy techniques and recommend suitable communication aids.

Speech and communication aids are often referred to as Augmentative and Alternative Communication (AAC).

A person’s voice can also become weaker if respiratory problems mean they do not have enough breath to help them produce strong sounds.

A member of the specialist respiratory team may teach breathing techniques, such as breath stacking, which can make it easier for people with weak respiratory muscles to cough more effectively and produce a stronger sounding voice.

Some care workers will be involved in helping with this type of therapy. The carer will need to have knowledge of the technique to provide support, so they should also receive training from the specialist respiratory team.

An occupational therapist can assess the person’s needs for equipment such as environmental controls – switches that can be  used to control lights, TVs, radios or computers. These can be operated by almost any part of the body the person can still move.

Do:

  • find out how the person with MND prefers to communicate and any equipment they like to use
  • make sure any necessary communication aid is available and the person with MND is in the best position to access it
  • have a pen and paper handy so that the person, if they are able to, can write down any difficult words. This can reduce frustration and misunderstanding
  • remember that unspoken communication is important: sit face to face, and watch the person’s eyes, lips and gestures
  • use hand gestures to assist with your own speech where suitable. Over time, this will become a very important tool, for example using the ‘thumbs up’ sign to mean ‘good’
  • ensure the person with MND is the focus of communication
  • allow time and create a relaxed atmosphere
  • encourage the person with MND to slow down and overemphasise words to help clarity
  • check back with the person on what you think has been said and admit when you don’t understand
  • find out whether the person uses a simple code for yes and no. This can be a movement of any part of the body that can be carried out reliably without causing fatigue, such as eye blinking or a finger movement
  • make it easier for the person to contact you. If they struggle to speak on the phone, they may prefer to use email or text messaging
  • become an advocate for the person with MND and help them to communicate with others, if that is what they want you to do
  • share your knowledge with other carers who may be new to caring for the person with MND. If you spend a lot of time working with someone, you will get to know how they prefer to communicate.

Try not to:

  • alter the rate or sound of your speech, unless the person with MND has asked you to, or a speech and language therapist has recommended that you speak more slowly
  • finish the sentences of the person with MND, unless they ask you to. Also, avoid interrupting them. If the person you are caring for uses assisted ventilation, they may have to speak in rhythm with the machine. A gap when they are speaking won’t always be a natural pause
  • use family members or carers as a translator for the person with MND, unless it is clear that this is what the person with MND wants
  • ask complex questions that require long or difficult answers and can take up time and energy
  • use multiple choice questions. Questions that can be answered with yes, no or a single word are easier when speech is difficult. This is also important when someone has cognitive change or frontotemporal dementia: any question asked should only have a maximum of two choices of answer.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262