“Not That I’ve Become Exceptional, But I’m Able to Make Myself Understood Better”: Impact of Speech and Language Therapy on Everyday Communication in People with Primary Progressive Aphasia and Their Carers
摘要
Primary progressive aphasia (PPA) is a neurodegenerative syndrome characterized by progressive speech and language impairments that impact communication, independence, and psychosocial well-being. People with PPA (PwPPA) and their carers face communication difficulties that lead to social withdrawal. Speech and language therapy (SLT) offers non-pharmacological strategies to support communication, yet evidence regarding its perceived impact on daily life remains limited. This study explored the experiences of PwPPA and their carers following SLT, focusing on perceived changes in communication abilities, confidence, and psychosocial well-being.
MethodsPwPPA participated in a 5-week, tailored telerehabilitation program (Lexical Retrieval Cascade Treatment for logopenic PPA/semantic PPA; Video-Implemented Script Training for nonfluent/agrammatic PPA). Post-treatment questionnaires were developed to collect the opinions of PwPPA and their carers regarding the SLT. The questionnaires included 22 closed-ended Likert-scale items and two open-ended questions for each group. Quantitative data were analyzed for frequency and consistency between PwPPA and carers, while qualitative responses underwent reflexive thematic analysis. Twenty-five PwPPA and 24 carers completed the questionnaires.
ResultsQuantitative findings showed consistent perceptions between PwPPA and carers, with approximately 30% reporting improvements in communication confidence, speaking ability, and stress. Thematic analysis revealed four shared themes: reduction in negative emotions/increased self-efficacy, proactivity, acquisition of compensatory strategies, and the importance of the treatment setting and patient–clinician relationship. Additional themes included enhanced communicative effectiveness for PwPPA and increased awareness and improved interpersonal relationships for carers. Participants emphasized the benefits of individualized, supportive therapy delivered in a comfortable environment, including via telerehabilitation.
ConclusionOur study highlights the positive influence of SLT on both communication and psychosocial outcomes in PwPPA and their carers. Integrating subjective experiences with quantitative measures underscores the importance of person-centered, holistic interventions that address linguistic, emotional, and social dimensions, supporting everyday communication and quality of life.