NEW DEMENTIA REGISTRY FOCUSING ON CARE ENVIRONMENTS AND ON CAREGIVERS WAS LAUNCHED IN JAPAN: NATIONAL HOSPITAL ORGANIZATION DEMENTIA REGISTRY (NHODR)

Abstract

It is necessary to maintain quality of life (QOL) of the patients as well as of their care givers. Although, dementia tends to slowly progress, care could modify QOL of the patients and their caregivers. We launched new dementia registry to survey who cares patients and how they struggle with the problems. The aims of the registry study are to clarify QOL of dementia patients and to modify the prognoses. We'll report QOL of the patients who has been registered in National Hospital Organization Dementia Registry (NHODR) up to now. NHODR puts emphasis on QOL and socio-psychological burden of patients and their caregivers. We made a “Life Assessment for Dementia (LAD)”consisting 7 questioners to assess subjective QOL and LAD scale based on LAD. Also, we made Geriatric Happiness Scale (GHS) based on Geriatric Depression Scale (GDS). We selected 5 positive questioners and gave them one point each. GHS Using LAD together with the quality of life in late-stage dementia scale (QUALID) GDS and GHS, we surveyed how patients feel and how their caregivers regard them. A total of 49 hospitals belonging to National Hospital Organization joined the study. A total of 286 patients (Age; 80.0±7.2) has been registered up to now. LAD score was 13.5±2.3, QUALID was 17.2±17.2, GDS was 4.8±3.1and GHS was 3.6±1.0, respectively. The ratios of YES for “Are you basically satisfied with your life?”, “Are you in good spirits most of the time?”, “Do you feel happy most of the time?”, “Do you think it is wonderful to be alive now?” and “Do you feel full of energy?” were 91.2, 89.0, 90.0, 84.8, 50.6, respectively. NHODR is focusing on caregivers in addition to intellectual functions, activities of daily living, underlying disease, lifestyle, and covers almost all the country with follow up period of 12 years. Patients with dementia had fairly positive thoughts. We will put NHODR going to find supportive system for patients and their caregivers. The study is supported by National Hospital Organization as “Large scale clinical research to promote evidence based medicine” and is cooperated with the team for NHODR study.