Development, Validity, and Reliability of a Japanese Version of End-of-Life in Dementia Scales

Abstract

Background: End-of-life care quality should ideally be evaluated by patients themselves. However, patients suffer clinical symptoms and conspicuous cognitive and physical decline in end-stage dementia. Therefore, family members and nurses are often good proxies for evaluating patients’ satisfaction with end-of-life care and symptoms in end-stage dementia. The End-of-Life in Dementia scales, originally written in English, were specifically designed to examine the quality of end-of-life care for persons with dementia. This study aimed to develop a Japanese version of the End-of-Life in Dementia scales and evaluate its validity and reliability in Japan.Methods: The Japanese version of the End-of-Life in Dementia scales (EOLD-J) was created by translating the following original scale measurements: Satisfaction with Care (SWC-EOLD-J), Symptom Management (SM-EOLD-J), and Comfort Assessment in Dying with dementia (CAD-EOLD-J). Participants were 113 family members of deceased residents who received end-of-life care and died at 33 participating nursing homes, and 113 nurses who provided care to the residents. Participants were asked to recall residents’ last months and select related items on an evaluation form. The reliability of the scales was evaluated using a Cronbach’s alpha. The construct validity of the relationships between the SWC-EOLD-J scores and the Japanese Decision Regret Scale (DRS-J), the SM-EOLD-J and the short version of Quality of Life Questionnaire for Dementia (short QOL-D), and the CAD-EOLD-J and the short QOL-D were evaluated using Spearman’s rank correlation coefficient.Results: Responses from 83 deceased residents’ family members, and 62 nurses were analyzed. The Cronbach’s alphas of the SWC-EOLD-J was 0.77, the SM-EOLD-J was 0.60, and the CAD-EOLD-J was 0.88. The SWC-EOLD-J score was significantly correlated with DRS-J (γ＝0.504, p < 0.001). The SM-EOLD-J score was significantly correlated with subscale of the short QOL-D: negative dimension ( γ＝0.587, p < 0.001), the CAD-EOLD-J score was significantly correlated with subscale of the short QOL-D: negative dimension (γ＝0.509, p < 0.001). Conclusions: This study developed the EOLD-J and confirmed the reliability and validity of this scale.