Survey of caregiver burden in families of adults with higher brain dysfunction

Abstract

Background & Objective: The recovery of patients with higher brain dysfunction depends on the extent of brain injury, clinical management, and follow-up rehabilitation, as well as care given by family members. Based on a questionnaire, the present study was designed to assess and analyze the factors that affect the caregiver burden in families providing support for individuals with higher brain dysfunction. Methods: We conducted a questionnaire survey of families caring for 964 patients with higher brain dysfunction. The caregiver burden was evaluated by the short version of the Zarit Caregiver Burden scale (J-ZBI_8), we analyzed the correlation of J-ZBI_8 with patients’ cognitive behavioral disorders (4-point Likert scale), activities of daily living (ADL, Barthel index, BI), social interaction and employment status. Results: The study included 964 patients (776 males), with age at injury of 34.5±17.4 (0-85) years (mean±SD), current age 47.1±14.1 (19-89) years, and time from injury of 12.6±9.2 (0-60) years. The main causative conditions were cerebrovascular accidents and brain trauma. The survey indicated that 866 (89.8%) of the patients lived with somebody, of whom 377 (43.5%) lived with their spouses. The BI was 86.9±21.9 (0-100), with scores 85 points or more in 727 cases (75.4%). The J-ZBI_8 correlated with presence of behavioral disorders, unemployment and social isolation. Conclusions: Our results suggested that the burden on family members who provide care to individuals with higher brain dysfunction can be reduced by clinical management of cognitive behavioral disorders, securing employment for the affected individuals and enhancement of community interaction.