The Netherlands Institute for Health Services Research (NIVEL), Otterstraat, Utrecht, The Netherlands.
Dutch Alzheimer's Association, Kosterijland, Bunnik, The Netherlands.
BMC Nurs. 2010 Jun 7;9:9. doi: 10.1186/1472-6955-9-9.
This paper describes both the use of and needs for informal caregivers of people with dementia, based on a questionnaire survey organized within the National Dementia Programme in the Netherlands. The National Dementia Programme is a quality collaborative of the Dutch Alzheimer's Association, the Institute of Quality of Healthcare (CBO) and the Knowledge Centre on Ageing (Vilans), instigated by the Ministry of Health, Welfare and Sport, to improve integrated care for people with dementia and their informal caregivers. The support needs of informal caregivers are important to improve caregiver well-being and delaying institutionalization of the person with dementia.
In the period April 2006 - January 2007, the National Dementia Programme questionnaire was completed by 984 informal caregivers. Descriptive statistics were used to analyze the use of and needs for additional professional support by informal caregivers. Chi-square tests were used to assess the relationships between characteristics of the caregivers (spouses, sons/daughters, sons/daughters in-law) and support needs on one hand and to assess the relationship between the living situation of the person with dementia (living at home or living in a nursing home or home for the elderly) and support needs on the other hand.
Almost all informal caregivers (92.6%) received some professional support. However, two thirds (67.4%) indicated they had one or more needs for additional professional support. Informal caregivers often need additional professional advice about what to do when their relative is frightened, angry of confused. Spouses reported different needs than sons or daughters (in-law): spouses relatively often need emotional support and sons or daughters (in-law) more often need information and coordination of dementia care.
Most of the informal caregivers report that they need additional information and advice, e.g. about how to cope with behavioral problems of their relative, about the progression of the illness trajectory, emotional support and coordination of dementia care. Future support programmes, e.g. in the field of case management, should address the specific needs of informal caregivers.
本文基于荷兰国家痴呆症计划内的问卷调查，描述了痴呆症患者的非正式照护者的使用情况和需求。该国家痴呆症计划是由荷兰阿尔茨海默氏症协会、医疗保健质量研究所（CBO）和老龄化知识中心（Vilans）联合发起的一个质量协作项目，由荷兰卫生、福利和体育部推动，旨在改善痴呆症患者及其非正式照护者的综合护理。非正式照护者的支持需求对于改善照护者的幸福感和延缓痴呆症患者的机构化至关重要。
在 2006 年 4 月至 2007 年 1 月期间，984 名非正式照护者完成了国家痴呆症计划问卷。使用描述性统计分析来分析非正式照护者对额外专业支持的使用情况和需求。卡方检验用于评估照护者的特征（配偶、子女、子女的配偶）与支持需求之间的关系，以及痴呆症患者的生活状况（居家、疗养院或养老院）与支持需求之间的关系。
几乎所有的非正式照护者（92.6%）都得到了一些专业支持。然而，三分之二（67.4%）的人表示他们有一个或多个额外的专业支持需求。非正式照护者经常需要额外的专业建议，例如当他们的亲人感到恐惧、愤怒或困惑时该怎么做。配偶与子女（配偶）报告的需求不同：配偶相对更需要情感支持，而子女（配偶）更需要有关痴呆症护理的信息和协调。
大多数非正式照护者报告说他们需要额外的信息和建议，例如如何应对亲人的行为问题、疾病进程的进展、情感支持和痴呆症护理的协调。未来的支持计划，例如在个案管理领域，应针对非正式照护者的具体需求。
