“It’s not a normal relationship, and it won’t be”: The impact of aphasia on spouses

Background: Aphasia has far-reaching effects on both the affected individuals and their surroundings. In 2001, the World Health Organization (WHO) introduced the International Classification of Functioning (ICF) model, which includes the concept of “third-party disability”, highlighting the challenges faced by healthy partners when their significant others have a medical condition. Despite family members expressing a willingness to engage in rehabilitation, healthcare professionals often overlook their negative emotions. Aim & Methods: This study explores the impact of aphasia on spouses of people with aphasia (PWA). Using mixed methods, it involved 30 spouses who completed the Family Aphasia Measure of Life Impact questionnaire (FAMLI. Grawburg et al. 2019), assessing the healthy partner’s functioning concerning the PWA. Additionally, 12 spouses from the same group participated in in-depth interviews about their lives before the stroke, their experiences during it, and life alongside aphasia. Results: The FAMLI questionnaire revealed notably low scores in four of five categories: health and daily life, helping others, communication and emotion and outside influences and interactions. However, the attitudes and personal life category yielded a positive score. The communication and emotion category had the most pronounced negative impact, a finding supported and enhanced by the interviews. Challenges included an overwhelming sense of burden and profound loss within marital relationships. Conclusion: Spouses of PWA face an emotionally taxing journey, with communication impairment reshaping marital dynamics. Speech-language pathologists should play a role in restoring effective communication. Addressing spouses’ unique needs should be a research and clinical priority.