Reviewing AAC support
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.
An AAC system should help to maintain and support a person’s communication and participation. It should also be compatible with other assistive technologies where possible, such as wheelchair control or environmental control systems. However, measuring successful AAC use in MND is complex for three reasons:
- The progression of MND and decline in physical ability may make a current AAC recommendation out-dated. Something that works today may not work tomorrow.
- Success depends, to some degree, on whether or not an AAC system meets a person’s expectations.
- Success may not mean regular use. It may be that a person only uses the system when they feel they need to.
There are some relatively simple ways to measure AAC success:
- Ask the person with MND when they use the AAC system and with whom.
- Ask the person with MND, and their regular communication partners, whether the system is working to their satisfaction. They may be tempted to say what they think you want to hear, so work on building a trusting relationship in which everyone can be critical as well as positive.
- Observe the person with MND using the AAC system in everyday conversation. Assess how easy it is for them to interact with other people.
- Document as an outcome measure a situation where the person’s use of an AAC system has resulted in a successful information transfer or decision. This may be end of life decisions made using AAC, or questions asked about gastrostomy or assisted ventilation.
- Where necessary, consider the use of non-verbal interview resources, such as Talking Mats.
It may be difficult for a client, and indeed a professional, to admit that an AAC intervention has not worked, particularly if a lot of work has been put into funding and training. Due to the nature of MND, it is not possible to ensure that all solutions will work for all people with the condition. The important thing is to listen to the needs of the person with MND and his/her family members. Building a trusting relationship will improve the chances of identifying and meeting a person’s needs.
Timing the review
- As a general guideline, it is suggested that people with MND who use an AAC system are reviewed at least once every four to eight weeks. If the person has been stable for several reviews in a row, it may be appropriate to extend the time period.
- Review will depend on a number of related factors, particularly the rate of disease progression and associated symptoms, such as swallowing. As with all clinical management issues, use of an AAC system should be seen as one part of a person’s wider communication repertoire.
- Reviews should be carried out shortly after major interventions, such as establishing non-invasive ventilation (NIV) or placement of a gastrostomy feeding tube.
- A review should, at minimum, establish whether the AAC system is fulfilling its purpose and whether any modifications are required.
- Whenever possible, a review should be face-to-face. If necessary, however, they may be carried out by phone or Skype.