Quality of life and burden in caregivers for ALS patients in Japan

Abstract

The present study was conducted with 20 ALS patients and their caregivers with the aim of examining whether caregiver burden and the caregiver's quality of life were correlated to the patient's degree of functional impairment. Patients were divided into a relatively mild functional impairment group (score of 14-18 on the ALS Functional Rating Scale (ALSFRS)) and a severe ALS group (score of 0-3 on ALSFRS). For those in the high-score ALSFRS group, caregiver burden increased as the patient's degree of functional impairment progressed, but there was no correlation in the low-score group. Furthermore, caregivers in the high-score ALSFRS group had significantly more mental health problems. These findings suggest the need for mental health care and reduction of caregiver burden due to progression of functional impairment for caregivers of ALS patients still at a relatively early stage of the disease.