Variation in communication strategies in amyotrophic lateral sclerosis during a two-year follow-up

ABSTRACT

We report on how functional capacity of communication and the use of augmentative and alternative communication (AAC) technology changed in persons with amyotrophic lateral sclerosis (ALS) and progressive dysarthria during a period of two years. The initial sample comprised 30 participants, nine of them survived the whole two years. The data was gathered in 157 communication assessments by a speech-language pathologist. Functional capacity of communication was evaluated with combined severity scales of speech and upper and lower limb function. Communication strategies used were gathered based on the participants’ own reports, and their use was confirmed during the clinical visits. A total of 57% of the participants either supported or substituted their natural speech with high- or low- technology strategies. The majority of them reported that they used high-technology rather than low-technology AAC as the main communication means after speech had deteriorated. The classification of functional capacity of communication changed in 63% of participants, more in bulbar than spinal-onset ALS as the disease progressed. Natural speech is a strong means of communication and not effortlessly replaceable. However, AAC means, such as handwriting, text-to-speech devices and computer-based devices, are essential for persons with ALS as their speech deteriorates. Several AAC strategies to augment deteriorated speech and replace natural speech are often needed. Functional capacity of communication and its individual changes along the disease progression must be taken into account during the continuing communication aid processes.

KEYWORDS:

• Communication
• augmentative and alternative communication
• AAC
• amyotrophic lateral sclerosis
• ALS
• functional capacity of communication
• bulbar symptoms
• follow-up study

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCID

Tanja Makkonen http://orcid.org/0000-0001-6358-5876

Additional information

Funding

This project (R07111) was supported by the University of Tampere, Tampere University Hospital and Finnish Association of Speech Therapists.