Julius Centre for Health Sciences and Primary Care, Utrecht MC, Utrecht, The Netherlands.
Institute of Health Policy & Management (iBMG), Erasmus University, Rotterdam, The Netherlands.
J Alzheimers Dis. 2014;40(3):631-42. doi: 10.3233/JAD-132420.
Health care systems aim to involve as much informal care as possible and dementia patients prefer to stay home as long as they can. In this context, perseverance time (Pt)-the period that the informal carer indicates to be able to maintain current care if the situation remains stable-is an important concept.
The aim of this study was to introduce the concept Pt and validate it in a sample of informal carers of dementia patients living at home.
Data were collected from 223 informal carers of dementia patients. Convergent validity was assessed by looking at associations of Pt with validated instruments for measuring subjective burden (CSI, CarerQol-7D, and SRB) and happiness (CarerQol-VAS). Content validity was evaluated by performing multivariate correlations between Pt and characteristics of dementia patients, informal carers, and care situations. The Medical Ethics Committee of Utrecht MC advised positively about the study protocol.
Correlation coefficients between Pt and the measures of burden CSI, SRB, and CarerQol-VAS were -0.46, -0.63, and 0.23 (p < 0.01), respectively. Health of dementia patient, informal carer living apart from the patient, and male gender of caregiver were positively associated with Pt; need for supervision, intensity of informal care provision, and reductions in working hours and hobbies in order to be able to provide care were negatively associated.
Pt is helpful in monitoring need for support and planning the transition of care from home to nursing home. This study provides a first indication of its validity, but replication is necessary.
医疗保健系统旨在尽可能多地纳入非正式护理，痴呆症患者只要有可能，就更愿意留在家里。在这种情况下，坚持时间（Pt）——即非正式照顾者表示在情况稳定的情况下能够维持当前护理的时间段——是一个重要的概念。
本研究旨在引入 Pt 这一概念，并在居家痴呆症患者的非正式照顾者样本中对其进行验证。
数据来自 223 名居家痴呆症患者的非正式照顾者。通过观察 Pt 与经过验证的用于测量主观负担（CSI、CarerQol-7D 和 SRB）和幸福感（CarerQol-VAS）的工具之间的关联，评估了其聚合效度。通过对 Pt 与痴呆症患者、非正式照顾者和护理情况的特征进行多元相关分析，评估了内容效度。乌得勒支 MC 医学伦理委员会对研究方案提出了积极建议。
Pt 与负担测量工具 CSI、SRB 和 CarerQol-VAS 的相关系数分别为-0.46、-0.63 和 0.23（p<0.01）。痴呆症患者的健康状况、与患者分开居住的非正式照顾者以及照顾者的男性性别与 Pt 呈正相关；需要监督、非正式护理提供的强度以及为了能够提供护理而减少工作时间和爱好与 Pt 呈负相关。
Pt 有助于监测支持需求和规划从家庭护理向养老院护理的过渡。本研究首次表明了其有效性，但需要进一步验证。
