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

背景资料：如果患有痴呆症的老年亲属疑似COVID-19很快变得不适，家庭护理人员和痴呆症患者可能必须迅速做出决定。决定可能涉及入院或是否在家接受护理，社交距离，以及该人可能希望或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进行其他潜在的创伤治疗。这些决定将对痴呆症患者和家人的情绪健康产生影响。目的：我们将制作一个基于证据的决策工具，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：该项目将包括三个阶段：1）我们将确定影响老年人死亡地点选择的关键因素，对证据进行快速审查; 2）我们将从阿尔茨海默氏症协会在线社区论坛上回顾和分析痴呆症患者的家庭护理人员在COVID-19方面面临的共同挑战和做出的决定。我们还将探讨在论坛上报告的COVID-19期间痴呆症患者的担忧; 3）我们将与痴呆症患者、家庭护理人员和医疗保健专业人员一起开发一个决策工具，供家庭护理人员和痴呆症患者在做出困难决定时使用。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，减轻内疚、负担、压力、紧张和焦虑的感觉。我们将与玛丽居里慈善机构、老年痴呆症协会和英国老年病学会密切合作，向可能从使用它们中受益的人传播该工具和我们的发现。

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.