Since people with advanced dementia are usually not able to make complex decisions, it is usually the family caregivers, as proxies, who have to decide on treatments and their termination. However, these decisions are difficult for the caregivers to make, as they are often inadequately informed and cannot properly assess the consequences; moreover, they are concerned about harming the sick person. We aimed to first develop an informative booklet about palliative care issues for caregivers of people with advanced dementia. Secondly, we aimed to investigate a change in family caregivers’ knowledge regarding palliative care issues and caregivers’ involvement in medical and care decisions before and after studying this booklet. A first version of the booklet was drafted by an experienced psychiatrist and palliative care specialist based on existing booklets and guidelines; necessary cultural adaptions were taken into consideration. A nominal group process was conducted to develop the informative guide. In order to investigate the acceptance of the booklet and the possibility to implement it, 38 patient-caregiver dyads were recruited, and caregivers were interviewed both before receiving the booklet and after 3 months of receiving the booklet. Experts from various disciplines collaborated on a German booklet for family caregivers of people with advanced dementia as an information aid regarding issues of palliative care. The subsequent test showed that all caregivers had experienced a personal benefit from the booklet. Caregivers had a significant gain of knowledge after provision of the booklet. A large proportion of caregivers who had not previously considered and/or discussed medical topics reported that they had done so within 3 months after obtaining the booklet, or planned to do so in the near future. The caregivers valued the comprehensible, concise and well-structured information guide on palliative care issues in advanced dementia. They agreed it increases knowledge and prompts decision making and therefore should be developed in many languages and disseminated among family caregivers of people with dementia. clinicaltrial.gov, NCT03548142. Retrospectively registered 7 June 2018.

中文翻译：

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制定和测试有关老年痴呆症患者家庭照顾者姑息治疗的信息指南

由于晚期痴呆症患者通常无法做出复杂的决定，因此通常由家庭护理人员作为代理人来决定治疗方法和终止治疗。但是，这些决定对于看护人来说很难做出，因为他们往往没有足够的信息，也无法适当地评估后果；此外，他们担心伤害病人。我们的目标是首先为老年痴呆症患者的照顾者编写有关姑息治疗问题的信息手册。其次，我们的目的是调查在研究本手册前后，家庭看护人对姑息治疗问题的了解以及看护人参与医疗和护理决策的变化。该手册的第一版是由经验丰富的精神科医生和姑息治疗专家根据现有的手册和指南起草的；考虑了必要的文化适应性。进行了名义上的分组过程以开发信息丰富的指南。为了调查手册的接受程度和实施的可能性，招募了38位患者护理者二元组，并在接受手册之前和接受手册三个月后对护理人员进行了访谈。来自各个学科的专家合作编写了一本德语手册，该手册为晚期痴呆症患者的家庭照顾者提供了有关姑息治疗问题的信息帮助。随后的测试表明，所有护理人员都从手册中受益。提供手册后，看护者会获得大量知识。以前从未考虑过和/或未讨论过医学主题的大部分护理人员报告说，他们在获得小册子后的三个月内已经这样做，或计划在不久的将来这样做。护理人员看重了关于晚期痴呆患者姑息治疗问题的可理解，简洁且结构合理的信息指南。他们同意增加知识并促进决策，因此应以多种​​语言开发并在痴呆症患者的家庭护理人员中传播。Clinicaltrial.gov，NCT03548142。追溯注册于2018年6月7日。以前从未考虑过和/或未讨论过医学主题的大部分护理人员报告说，他们在获得小册子后的三个月内已经这样做，或计划在不久的将来这样做。护理人员看重了关于晚期痴呆患者姑息治疗问题的可理解，简洁且结构合理的信息指南。他们同意增加知识并促进决策，因此应以多种​​语言开发并在痴呆症患者的家庭护理人员中传播。Clinicaltrial.gov，NCT03548142。追溯注册于2018年6月7日。以前从未考虑过和/或未讨论过医学主题的大部分护理人员报告说，他们在获得小册子后的三个月内已经这样做，或计划在不久的将来这样做。护理人员看重了关于晚期痴呆患者姑息治疗问题的可理解，简洁且结构合理的信息指南。他们同意增加知识并促进决策，因此应以多种​​语言开发并在痴呆症患者的家庭护理人员中传播。Clinicaltrial.gov，NCT03548142。追溯注册于2018年6月7日。他们同意增加知识并促进决策，因此应以多种​​语言开发并在痴呆症患者的家庭护理人员中传播。Clinicaltrial.gov，NCT03548142。追溯注册于2018年6月7日。他们同意增加知识并促进决策，因此应以多种​​语言开发并在痴呆症患者的家庭护理人员中传播。Clinicaltrial.gov，NCT03548142。追溯注册于2018年6月7日。