Severe Aphasia Life Participation

Aphasia is a language disorder that results from damage to the parts of the brain that contain language production and comprehension. Due to the profound loss of language function, people with severe aphasia have a difficult time communicating their wants and needs in life. In addition, both people with aphasia and their families reported a precipitous decline in social interactions and attributed this to communication impairment. It is important for speech-language pathologists (SLPs) to use aphasia-friendly self-reported measures to get an understanding of the individual\u27s overall life participation and quality of life. The aim of this research is to examine people with severe aphasia\u27s ability to self-report their own life participation, and compare perspectives from people with severe aphasia and their care partners. Ten participants between the ages of 32-76, including five with severe aphasia; and four spouses and one caregiver were assessed using the Assessment for Living With Aphasia - Revised (ALA-R), an aphasia-friendly tool that gives individuals with aphasia the opportunity to self-report life participation. Our results indicated that people with severe aphasia had a different perspective on their life participation compared to the perspectives of their care partners. On average, only 29% of the given answers from the participants with aphasia were identical to that of their care partners. Both groups were most consistent when answering questions related to the satisfaction of participation in everyday activities and social interactions; while the majority of the inconsistent answers were related to community involvement and overall outlook on life. Our findings supported the importance of understanding life participation of people with aphasia by using patient-reported outcome measures and promoted mutual understanding of real-life goals between people with severe aphasia and their care partners