Personal Social Services Research Unit: Faculty of Biology, Medicine, and Health, Division of Population Health, University of Manchester, Manchester, UK.
Personal Social Services Research Unit: Faculty of Biology, Medicine, and Health, Division of Population Health, University of Manchester, Manchester, UK; School of Health Sciences, University of East Anglia, Norwich, UK.
J Am Med Dir Assoc. 2017 Nov 1;18(11):967-973.e1. doi: 10.1016/j.jamda.2017.06.004. Epub 2017 Jul 18.
To explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries.
Cross-sectional study.
People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom).
A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers.
Variables regarding the informal carer included familial relationship and living situation. Variables relating to the person with dementia included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q), depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The care support network was measured using hours of caregiving (ADLs, instrumental ADLs [IADLs], supervision), additional informal care support, and service receipt (home care, day care). Experience of carer burden was recorded using the Zarit Burden Interview. Logistic regression analysis was used to determine factors associated with high carer burden.
Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with characteristics of the informal carer (family relationship, specifically wives or daughters), of the person with dementia (physical dependency in ADLs; neuropsychiatric symptoms, in particular nighttime behaviors and irritability), the care support network (hours of caregiving supervision; receipt of other informal care support) and country of residence.
A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of distressed behaviors and difficulties in ADLs by the person with dementia may be addressed by specific nonpharmacological interventions focusing on both elements. The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer.
探讨在 8 个欧洲国家中，（1）照顾者、（2）痴呆症患者和（3）护理支持网络的特征与照顾者负担之间的关联。
横断面研究。
8 个欧洲国家（爱沙尼亚、芬兰、法国、德国、荷兰、西班牙、瑞典和英国）中，被评估为有入住长期护理机构风险的痴呆症患者。
共计 1223 名接受社区居家服务支持的痴呆症患者及其非正式照顾者，或接受日间护理或临时护理的患者及其非正式照顾者。
与非正式照顾者相关的变量包括家庭关系和居住情况。与痴呆症患者相关的变量包括认知功能（简短精神状态量表[S-MMSE]）、神经精神症状（神经精神问卷[NPI-Q]）、抑郁症状（康奈尔抑郁量表）、合并症（Charlson 合并症指数）和身体功能（Katz 日常生活活动[ADL]指数）。使用（ADL、工具性 ADL [IADL]、监督）的照顾时间、额外的非正式照顾支持和服务接受情况（家庭护理、日间护理）来衡量护理支持网络。使用 Zarit 负担量表评估照顾者的负担体验。采用逻辑回归分析确定与高负担相关的因素。
照顾者负担在爱沙尼亚最高（平均 39.7/88），在荷兰最低（平均 26.5/88）。高负担与非正式照顾者的特征（家庭关系，特别是妻子或女儿）、痴呆症患者的特征（ADL 方面的身体依赖；神经精神症状，特别是夜间行为和易怒）、护理支持网络（监督的照顾时间；接受其他非正式照顾支持）和居住国显著相关。
一系列因素与被认为处于长期护理边缘的痴呆症患者的非正式照顾者的负担有关。对非正式照顾者的支持需要考虑到性别差异。痴呆症患者困扰行为和日常生活活动困难的双重挑战，可以通过针对这两个方面的特定非药物干预措施来解决。额外非正式照顾者支持的潜在保护作用突显了同伴支持或更好的针对性家庭支持服务的重要性。实施适当和有针对性的干预措施，通过支持非正式照顾者来减轻负担，可能使痴呆症患者能够更长时间地留在家中。
