The Study on Caregivers' Subjective Burden in Caregiving of Amyotrophic Lateral Sclerosis Patients at Home

Abstract

Purpose : Caregivers of amyotrophic lateral sclerosis (ALS) patients have experienced a considerable burden. However, there was no study evaluating the burden of caregivers of ALS patients. The purpose of this study was to investigate the subjective burden of caregivers of ALS patients at home and to clarify the factors of patients, caregivers and social support resources which were related to this burden. Methods : We questionnaired 75 caregivers of ALS patients at home about their subjective burden of caregiving and its factors of patients, caregivers and social support resources from August to November in 1999 Subjective burden of caregivers of ALS patients was evaluated by the Japanese version of the Zarit Caregiver Burden Interview. Results : We had 67 responses (89.3%). The mean score for burden was 41.2 (SD = 13.5). As a result, caregivers' burden was found to be correlated with these three factors , the duration of caregiving at home, the times and the amount of hours of visiting nursing. These findings suggest that caregivers' burden is subject to the duration of caregiving, so we should reconsider the way how we can give more effective visiting nursing and support caregivers of ALS patients at home.