Kraijo Henk, van Exel Job, Brouwer Werner
Julius Centre for Health Sciences and Primary Care, Utrecht MC, Utrecht, The Netherlands.
Institute of Health Policy & Management, Erasmus University Rotterdam, Bayle Building, P.O. Box 1738, Rotterdam, 3000 DR The Netherlands.
BMC Nurs. 2015 Nov 6;14:56. doi: 10.1186/s12912-015-0107-5. eCollection 2015.
Given the projected increase of people with dementia over the next few decades and the related demand for informal care, an important question for health policy makers is to what extent and for how long informal carers can be expected to provide care in a sustainable way. This study aimed to investigate the perseverance time of informal carers for people with dementia.
A 2-year longitudinal cohort study was conducted. Questionnaires were used to collect data about the care situation, the impact of caregiving on carers and their need for support, and the anticipated and realized perseverance time of informal carers for people with dementia living at home. The data were analysed using bivariate and multivariate analyses.
Two hundred twenty-three carers for people with dementia were included in the study and 25 (11.2 %) dropped out during the follow-up. The results show that after 1 year, 74 (37.4 %) of 198 patients were still living at home, and after 2 years, 44 (22.2 %) patients were still living at home. The variables that were associated with this outcome were identified. When informal carers anticipated that their perseverance time would be less than 1 year, this was indicative of their actual perseverance time.
Anticipated perseverance time provides a fair indication of the actual duration of informal care. It is most accurate when carers anticipate a limited rather than an unlimited perseverance time. Although further research is required to support these findings, the concept of perseverance time may be considered a useful additional instrument in health policy and clinical practice for monitoring carers' need for support and for planning the transition of care from home to a nursing home.
鉴于预计在未来几十年中痴呆症患者人数会增加以及对非正式护理的相关需求，卫生政策制定者面临的一个重要问题是，非正式护理人员在多大程度上以及能够以可持续的方式提供护理多长时间。本研究旨在调查痴呆症患者的非正式护理人员的坚持时间。
进行了一项为期2年的纵向队列研究。通过问卷调查收集有关护理情况、护理对护理人员的影响及其支持需求，以及在家中生活的痴呆症患者的非正式护理人员的预期和实际坚持时间的数据。使用双变量和多变量分析对数据进行分析。
223名痴呆症患者的护理人员纳入了研究，25名（11.2%）在随访期间退出。结果显示，1年后，198名患者中有74名（37.4%）仍在家中生活，2年后，44名（22.2%）患者仍在家中生活。确定了与这一结果相关的变量。当非正式护理人员预计其坚持时间少于1年时，这表明了他们的实际坚持时间。
预期坚持时间能合理地表明非正式护理的实际时长。当护理人员预计坚持时间有限而非无限时，这一指标最为准确。尽管需要进一步研究来支持这些发现，但坚持时间这一概念可被视为卫生政策和临床实践中监测护理人员支持需求以及规划从家庭护理向养老院护理过渡的一项有用的补充工具。
