COVID-19: Supporting family carers in making decisions for older relatives with dementia

背景：如果疑似患有新冠肺炎的痴呆症患者的年长亲属病情迅速恶化，家庭护理人员和痴呆症患者可能不得不迅速做出决定。决定可能涉及入院或是否在家中接受护理，社会距离，以及患者可能希望或可能不希望接受哪些治疗。这可能包括非常困难的决定，例如该人是否希望复苏或接受其他潜在的创伤治疗。这些决定将对家庭和痴呆症患者的情绪健康产生影响。目的：我们将制作一个循证决策工具，以支持家庭照顾者和痴呆症患者在COVID-19期间做出这些困难的决定。方法：这个项目将包括三个阶段：1)我们将识别影响老年人死亡地点选择的关键因素，对证据进行快速回顾；2)我们将回顾和分析痴呆症患者的家庭照顾者在新冠肺炎上做出的常见挑战和决定，来自阿尔茨海默氏症协会在线社区论坛。我们还将在论坛报道的新冠肺炎期间探讨痴呆症患者的担忧；3)与痴呆症患者、家庭照顾者和医疗保健专业人员一起，开发决策工具，供家庭照顾者和痴呆症患者在做出困难决定时使用。授精和影响：该工具将为照顾者提供一个明确的框架，帮助他们做出决定，缓解负罪感、负担、压力、紧张和焦虑。我们将与玛丽·居里慈善机构、阿尔茨海默氏症协会和英国老年医学学会密切合作，将该工具和我们的发现传播给可能从使用它们中受益的人。

Background: If an older relative with dementia with suspected COVID-19 becomes unwell quickly, family carers and the person with dementia may have to make rapid decisions. Decisions may concern hospital admission or whether to receive care at home, social distancing, and which treatments the person may or may not wish to receive. This can include very difficult decisions such as whether the person wishes to be resuscitated or have other potentially traumatic treatments. These decisions will have an impact on the emotional wellbeing of both the family and person with dementia.Aim: We will produce an evidence-based decision tool to support family carers and people with dementia to make these difficult decisions during COVID-19.Methods: This project will consist of three phases: 1) We will identify key factors influencing the choice of place of death in older people, conducting a rapid review of the evidence; 2) We will review and analyse common challenges and decisions family carers of people with dementia are making in relation to COVID-19, from the Alzheimer's Society online community forum. We will also explore concerns of people living with dementia during COVID-19 reported on the forum and; 3) Together with people living with dementia, family carers and health care professionals, we will develop a decision tool for family carers and people with dementia to use when making difficult decisions.Dissemination and Impact: The tool will provide carers with a clear framework to help them to make decisions and ease feelings of guilt, burden, stress, strain and anxiety. We will work closely with Marie Curie Charity, Alzheimer's Society and British Geriatrics Society to disseminate the tool and our findings to the people who may benefit from using them.