Increased Residual Disability Among Poststroke Survivors and the Repercussions for the Lives of Informal Caregivers

PURPOSE: To analyze the associations between increased residual disability among poststroke survivors and the repercussions for their informal caregivers' lives, taking into account the latter's gender and education level. METHODS: 215 stroke survivors (64.5 years; 55.8% men) were recruited by one neurologist from each of the 22 French regions. Katz Index of Independence in Activities of Daily Living (Katz ADL) was mean 9.3, and 54% still had impairments in "more than two of the six neurological domains" of the American Heart Association Stroke Outcome Classification (AHA.SOC): motor, sensory, vision, affect, cognition, and language. The 215 caregivers (57.8 years; 72.1% women) completed a face-to-face questionnaire concerning their social (8 items), material (4 items), and emotional (8 items) repercussions. RESULTS: Katz ADL and AHA.SOC were significantly related to social repercussions for caregivers. Lack of autonomy among stroke survivors (low Katz ADL) was associated with the material difficulties of most concern to caregivers: "I needed to move house" (odds ratio [OR] 1.16; 95% CI, 1.07-1.27) and "I cannot go out anymore" (OR 1.29; 95% CI, 1.16-1.44). Being a male caregiver was strongly associated with a feeling of injustice (OR 2.53; 95% CI, 1.07-6.00). A low educational level was linked to an increased feeling of fear (OR 2.61; 95% CI, 1.05-6.51) and a greater feeling of isolation (OR 6.49; 95% CI, 1.20-35.02). CONCLUSION: Increased dependency post stroke leads to impoverishment in the caregiver's social relationships. Evaluating the emotional repercussions, particularly for men, is an important aspect of enabling survivors to continue to live at home. Innovative accompaniment and counseling services should be considered.