Amytrophic lateral sclerosis, also known as motor neurone disease (MND), is a progressive neurological disease that destroys the nerve cells responsible for controlling voluntary muscle movements resulting in severe dysarthria in 95% of people with MND. It may lead to complete inability to communicate prior to death. Augmentative and Alternative Communication (AAC) can provide vital access to communication. The current best practice recommendations emphasis three principles to guide the provision of AAC: 1) appropriate timing of intervention; 2) inclusion of communication partners; and 3) provision of support in using the aids over time. This study aimed to gain an insight into the experiences of people with MND and the importance of these principles for provision of AAC. The researchers recruited 21 people with MND, from internet-based social media and support groups, who completed a 42-item survey made up of rating scales, yes/no, multiple choice and open questions. Most participants reported that their assessment and intervention experiences with AAC included at least some aspects of the three principles described. Appropriate timing of the intervention was the area of greatest variability with less than 50% of participants reporting regular follow-up. The respondents recommended that appropriate timing of interventions requires input across time, that activities and training need to be individualised to the needs of the person with MND and their communication partner, and that people need to see and try out a range of AAC options. This article highlights the importance of maintaining a voice throughout the disease process with MND, and is relevant to any person diagnosed with any progressive neurological disease including dementia, Parkinson’s disease and multiple sclerosis
Maintaining a voice throughout the MND journey
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