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National Hospital Organization Dementia Registry (NHODR): A newly developed dementia registry focusing on caregivers and their situations and problems
Author(s) -
Shigematsu Kazuo
Publication year - 2020
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1002/alz.042409
Subject(s) - dementia , medicine , caregiver burden , family caregivers , gerontology , severe dementia , nursing , family medicine , disease , pathology
Background Caregivers are necessary for the care of patients with dementia, which is defined as a condition needs care for daily life. However, it is getting more and more difficult for families to care one (or even more than one) of the member suffers dementia, partly because the society has changed to be a nuclear family based. The burden differs among conditions in which caregivers live. From the stand point of care, dementia patients are divided into three major groups; live alone, live with their spouses, and live with their younger generations. Care should be customized according to the groups. For patients who live by themselves, care by the non‐family members are needed, ideally by the official supports regulated by the governments. On top of that, supports by the families are often required, which causes problem for them; for example, some live far away, some have their own jobs, children and even other elderly needing care. For patients who live with their spouses, mostly spouses take care of the patients and supports for the caregivers are needed, because they often elderly and are flail as well. For patients live with their younger generations, also support for the caregivers are important to reduce the burden and keep the relationship between patients and caregivers in a good way. In NHODR, we collect data on caregivers. Who are the main caregivers, where do they live, whether they have jobs, children and elderlies to care, how long they spend on care, how much burden they feel, how well the relationships are, and so on. At the end of 2019, 837 patients were registered to NHODR. We will report the preliminary results showing the problems/difficulties of the caregivers.