Repercussions of language difficulties in people with amyotrophic lateral sclerosis and the impact on their lives and on their caregivers

ABSTRACT

Purpose:

to analyze the repercussions of language difficulties in people presented with Amyotrophic Lateral Sclerosis and in their caregivers, and the impact on their lives.

Methods:

a cross-sectional study and qualitative approach, structured according to the COREQ. Semi-structured interview was conducted with 30 participants, family members and/or caregivers of people with the disease, most of them diagnosed for less than 5 years, and then transcribed and analyzed under repetition and relevance criteria.

Results:

most participants were women, spouses, between 50 and 70 years of age, in average being a caregiver for less than 3 years. Most interviewees reported the absence of communication difficulties with the disease, little use of Augmentative and Alternative Communication, restricted social interaction, and the perception of signs of discouragement and sadness in the person under their care. Regarding themselves, they mentioned anguish related to the prognosis, emotional overload, and intense change of routine in their lives.

Conclusion:

language difficulties were not frequently reported, despite the observation of restricted and social interactions. These findings showed the negative impacts on the quality of life of individuals and that of their family members and caregivers, which are experienced as anguish.

Keywords:
Amyotrophic Lateral Sclerosis; Health Vulnerability; Family; Communication Barriers; Caregivers