Personalized assessment and intervention with a specific communication strategy are key to improving communication in patients with amyotrophic lateral sclerosis (ALS).
Dysarthria, the term for a group of speech disorders, affects 95% of patients with ALS. Augmentative and alternative communication (AAC), which includes aided and unaided approaches such as communication books and sign language, can be an important aid.
Several studies have demonstrated the benefits of AAC. However, some ALS patients have difficulty obtaining assessments for this method. Moreover, studies have identified three principles in the provision of AAC — timing, inclusion of communication partners and provision of support using multiple methods.
In a study titled “Augmentative and Alternative Communication (AAC) Will Give You a Voice”: Key Practices in AAC Assessment and Intervention as Described by Persons with Amyotrophic Lateral Sclerosis,” published in the journal Seminars in Speech and Language, researchers aimed to assess the experiences of ALS patients with AAC and the level of importance that patients assign to the three AAC principles mentioned.
The study involved 21 ALS patients (11 men and ten women, mean age 57) who were asked to complete a survey and follow-up emails.
The questions aimed to gather information from the patients regarding their experience and assessment of what the researchers referred to as the six “best practices ” of AAC. These were: early referral, regular evaluation, continued treatment, inclusion of communication partners from onset, support for changes in AAC approaches over time and support for a multimodal approach to communication.
The patients were also asked about their recommendations and any advice they would give to other ALS patients regarding AAC.
The majority of the participants agreed with the importance of the three key AAC intervention principles and reported that their own experience with AAC included at least some of these aspects.
Fifteen of the 21 participants reported that they had been referred for AAC at an early stage; 11 said they continued to receive treatment with a speech-language pathologist (SLP). Only 10 patients reported that they had received regular re-evaluation.
When asked to indicate their “perception of the importance” of their experience with aspects of AAC, 18 patients indicated that early referral for AAC evaluation was very important, while 16 patients indicated agreement with the need for regular re-evaluation and 11 patients agreed with the importance of continual treatment. Regarding this last question, however, 10 participants reported that they either disagreed or were neutral on the subject.
Most patients (18) indicated that they agreed with the need for communication partners in the evaluation and training for high-tech AAC devices, and 15 patients reported that this was part of their AAC intervention.
Regarding the use of multiple methods during the AAC intervention, 13 patients indicated that their SLP “discussed how multiple modalities must be used to capitalize on their changing strengths and abilities.” Consequently, most (19) patients agreed that support should be provided for changes in AAC approaches over time.
When asked about their own recommendations, most participants (20) indicated the importance of: staging assessment and intervention over time, providing individual training activities according to the needs of the patient and their communication partner, and ensuring that patients have access to a variety of AAC systems.
Patients also recommended that other patients identify and seek information from AAC experts and resources, learn the AAC system aspects before they are needed and develop expertise in AAC systems.
In conclusion, the researchers state that their study provides “evidence that the development of personalized assessment and intervention AAC programs, built on core principles of effective practice, will contribute to improved communication outcomes for” patients with ALS.
“AAC will give you a voice. It will allow you to stay in touch with family and friends, make new friends in and out of the ALS community. It’s the only way to be in touch with the world after ALS steals all of your abilities to communicate,” one participant stated.