Introducing AAC to people with MND
Augmentative and alternative communication (AAC) is an important clinical intervention for many people with motor neurone disease (MND).
This information is for health and social care professionals working with people with MND. It provides suggestions for best practice in AAC provision, and where to find more information.
The timing of AAC intervention for people with MND is crucial. The most important factor is to be sensitive to the person’s needs, particularly during the first meeting.
The first appointment should begin by establishing what the person already knows about MND and communication. This can be explored through discussion around awareness of:
- the diagnosis
- the general prognosis/change
- how MND can affect communication
- AAC options
If it becomes clear that the person is unaware of the diagnosis and/or general prognosis, then this should be raised with their neurologist, GP or specialist nurse prior to further intervention. It is not the role of therapists, nurses or social care professionals to provide a diagnosis of MND.
The needs and emotions of the person with MND and their family should always be considered before raising potentially sensitive issues such as AAC. However, some people may welcome early explanation of AAC options. Early intervention may be advantageous to ensure that equipment is accepted and available when it is needed, or if voice banking might be an option.
• See our information on voice banking
Introducing the concept of AAC should begin with care, progressing step-by-step at the person’s own pace. Simply handing out information about AAC options at an initial appointment is not advisable, unless this is requested.
AAC should be introduced positively as a way of meeting needs and supporting speech/natural communication (eg for use when tired or in specific situations).
Try not to overwhelm the person with AAC technology products or options. It is better to begin with explaining how AAC can help. If the person is very informed about AAC and technology then more information can be offered as required.
Plenty of time should be allocated to explain AAC and the range of suitable/available AAC technologies. Time should be provided for the person to ask questions. They may need help in thinking about what the important questions are.
Some people with MND may have already explored AAC options on the Internet, and may have their own ideas about what they want to use. This collaborative approach should be welcomed and not be perceived as a threat to a professional’s knowledge.
Professionals should always be honest about their knowledge. It is not reasonable to expect non-AAC specialists (or even specialists themselves) to have a mental catalogue of all available AAC systems and their specifications. Professionals can reassure people with MND that they will investigate anything discussed and share their findings as soon as possible.
Even if a person has a high-tech device, they should be made aware that they will always need a low-tech option available, such as a letter chart. This may be used when the high-tech device is not available, or in the event that it breaks down.