Identifying and mitigating the individual and dyadic impact of COVID19 and life under physical distancing on people with dementia and carers (INCLUDE)

痴呆症患者说，个人接触是他们幸福的关键，而许多提供无偿护理的家庭成员被孤立并感到孤独。痴呆症患者和照顾他们的家庭成员特别容易受到减少冠状病毒（Covid-19）症状风险所需的物理距离措施的影响。这些措施可能令人恐惧，并可能损害福祉和关系，同时减少获得护理服务和支持的机会。随着社会限制持续一段时间，受痴呆症影响的人有可能在其他人适应时被“抛在后面”。我们必须改变为痴呆症患者提供高质量护理和支持的方法，以考虑到这一点。在INCLUDE研究中，我们旨在了解新冠肺炎疫情的影响以及由此对痴呆症患者及其护理人员的限制，并开发资源，以解决这种情况的负面和潜在的有害影响。我们将邀请痴呆症患者和照顾者参加正在进行的“改善老年痴呆症的经验和增强积极生活”（IDEAL）方案参加INCLUDE。IDEAL一直在跟踪一大群痴呆症患者和护理人员，以了解是什么让人们在这种情况下“生活得很好”。这些发现凸显了最有可能受到新冠肺炎疫情影响的社会和心理资源的重要性。INCLUDE研究将为IDEAL方案增加一个新的数据收集模块。这将是专门设计来研究新冠肺炎疫情的影响和由此产生的限制。参与者将完成问卷调查，并在结构化面试中回答开放式问题，一个子集还将参与关于他们经历的更具对话性的半结构化面试。痴呆症患者和护理人员将参与制定面试时间表。我们预计300名痴呆症患者和300名护理人员将完成结构化访谈，最多50名痴呆症患者和50名护理人员将完成半结构化访谈。INCLUDE参与者提供的信息将使我们能够了解Covid-19如何影响痴呆症患者和护理人员，以及特定亚组的影响如何不同，例如基于年龄，痴呆症类型或社会经济地位。因为我们已经有了关于IDEAL参与者的大量信息，我们将能够将他们的回答与他们之前提供的信息联系起来。这将使我们能够确定COVID-19对症状和健康轨迹的影响;例如，我们可以确定特定症状随时间的变化大于预期的地方。我们还将探讨痴呆症患者的变化如何影响照顾者，反之亦然。我们将与痴呆症患者和护理人员合作，利用获得的证据开发“与冠状病毒一起生活”（LILAC）工具包，这是一套支持痴呆症患者和护理人员的社会，心理和身体健康以及关系的资源，并为健康，社会护理和志愿部门工作人员提供指导。

People with dementia say that personal contact is key to their well-being, while many family members providing unpaid care are isolated and feel lonely. People with dementia and the family members who care for them are especially vulnerable to the impact of the physical distancing measures needed to reduce the risk of developing coronavirus (Covid-19) symptoms. These measures can be frightening and can damage well-being and relationships, while reducing accessibility of care services and support. With social restrictions continuing for an extended period, people affected by dementia risk being 'left behind' as the rest of the population adapts. Our approach to delivering high-quality care and support for people affected by dementia must change to take account of this.In the INCLUDE study we aim to understand the impact of the Covid-19 epidemic and the resulting restrictions on people with dementia and their carers, and to develop resources to address the negative and potentially harmful effects of this situation.We will invite people with dementia and carers participating in the ongoing 'Improving the experience of Dementia and Enhancing Active Life' (IDEAL) programme to take part in INCLUDE. IDEAL has been following a large group of people with dementia and carers over time to understand what makes it possible for people to 'live well' with the condition. The findings highlight the importance of the very social and psychological resources that are most likely to have been affected by the Covid-19 epidemic. The INCLUDE study will add a new data collection module to the IDEAL programme. This will be specifically designed to examine the impact of the Covid-19 epidemic and resulting restrictions. Participants will complete questionnaires and respond to open-ended questions in a structured interview, and a sub-set will additionally engage in a more conversational semi-structured interview about their experiences. People with dementia and carers will be involved in developing the interview schedules. We expect 300 people with dementia and 300 carers to complete the structured interview, with up to 50 people with dementia and 50 carers completing the semi-structured interview. The information that INCLUDE participants provide will enable us to understand how Covid-19 has affected people with dementia and carers as a whole and how the impact differs for particular sub-groups, for example based on age, type of dementia, or socioeconomic status. Because we already have a good deal of information about IDEAL participants we will be able to link their responses with information they provided previously. This will allow us to identify the impact of Covid-19 on trajectories of symptoms and well-being; for example, we can pinpoint where changes over time in particular symptoms are greater than expected. We will also explore the ways in which changes for the person with dementia affect the carer and vice versa. Working together with people with dementia and carers, we will use the evidence gained to develop the Living Well Alongside Coronavirus (LILAC) toolkit, a set of resources to support social, mental and physical health and relationships for people with dementia and carers, and provide guidance for health, social care and voluntary sector staff.