Improving the experience of dementia and enhancing active life: living well with dementia cohort study 2016-2018

This collection contains semi-structured qualitative interviews with a sample of 20 of the study’s participants with dementia, along with their main carer. Improving the Experience of Dementia and Enhancing Active Life (IDEAL) is a longitudinal cohort study. It focused on the potential for living well with dementia from the perspective of people with dementia and their primary carers.
By living well, we mean maximising life satisfaction, reaching one's potential for well-being, and experiencing the best possible quality of life in the context of the challenges that dementia presents for individuals, relationships and communities. Drawing together expertise from psychology, sociology, medicine, public health, economics, social policy, physiology and statistics, the study examined what can be done to ensure that as many people as possible are enabled to live well with dementia. <p>Living well with dementia, whether as a person with dementia (PwD) or primary (usually family) carer (PC), can be understood as maximising life satisfaction, reaching one's potential for well-being, and experiencing the best possible quality of life (QoL). Enabling PwD and PC to live well with dementia is a key UK policy objective, but policy recommendations do not tell us how this can be achieved. This project aims to understand what 'living well' means from the perspective of PwD and PC. It will identify what helps people to live well or makes it difficult to live well in the context of having dementia or caring for a person with dementia. In order to understand what 'living well' means to people with dementia and primary carers, and what influences the possibility of living well, we will find out about the things that affect the way in which people adapt to the effects of the condition and the challenges it presents, and how these things change over time. These include the assets and resources people have available, and the support they get from other people in their network. We will find out about how the way in which people respond to the challenges presented by dementia affects their ability to engage in activities and participate in the community. We will look at how all of these things relate to well-being, satisfaction with life and quality of life for PwD and PC, and how changes in assets and resources affect the possibility of 'living well' with dementia. Over a two-year period we will recruit 1500 people with early-stage dementia from all areas of the UK. We will also include a PC wherever possible, and we expect to include at least 1000 PC. We will make contact with potential participants through the local research networks that link with NHS memory services. We will visit all the participants (PwD and PC) and we will ask them to respond to questions about things that influence their life satisfaction, well-being and quality of life. This will yield numerical data that we will analyse statistically. We will visit all the participants on two more occasions, one year apart, to find out how things develop or change over time and how any changes affect their life satisfaction, well-being and quality of life. A smaller group composed of those whose ability to live well improves or declines over the first year of the study will be interviewed in more depth in years 2 and 3, and we will draw out the important themes in what they tell us and use what they say to enrich the understanding we have gained from the statistical analyses. We will involve an advisory network including PwD, PC, members of the public and representatives of the Alzheimer's Society in running the study to help make sure that it is relevant to PwD and PC and that the best possible use is made of the findings. We will use our findings to create an action plan setting out what can be done by individuals, communities, health and social care practitioners, care providers and policy-makers to improve the likelihood of living well with dementia. We will work with policy-makers to ensure that the information we have gained will influence future policies. We will work with commissioners and providers of health services and social care services, and with practitioners in these areas, using the evidence we have gained to improve the effectiveness of services. We will engage with the general public to try to encourage a more constructive attitude towards dementia and make local communities more aware and dementia friendly. The study will be the first large-scale study of its kind and will help to develop the skills of researchers in the dementia field and stimulate new developments. It will provide a unique resource and focus for social science research in the UK and internationally.</p>

本数据集收录了针对本研究中20名痴呆症患者及其主要照料者的半结构化质性访谈内容。

改善痴呆体验并提升积极生活（Improving the Experience of Dementia and Enhancing Active Life, IDEAL）是一项纵向队列研究，其核心视角聚焦于痴呆症患者及其主要照料者眼中“与痴呆症好好生活”的可能性。所谓“好好生活”，指的是在痴呆症给个体、人际关系及社群带来挑战的背景下，最大化生活满意度、实现个人福祉潜能，并获得尽可能最优的生活质量。本研究整合了心理学、社会学、医学、公共卫生学、经济学、社会政策学、生理学及统计学等多领域专业知识，旨在探索可帮助尽可能多的人群实现与痴呆症好好生活的可行路径。

无论是痴呆症患者（person with dementia, PwD）还是主要照料者（primary carer, PC，通常为家属），“与痴呆症好好生活”均可理解为最大化生活满意度、实现个人福祉潜能，并获得尽可能最优的生活质量（quality of life, QoL）。助力PwD与PC实现与痴呆症好好生活是英国一项关键政策目标，但现有政策建议并未阐明具体实现路径。本项目旨在从PwD与PC的视角解读“好好生活”的内涵，识别在罹患痴呆症或照料痴呆症患者的背景下，哪些因素有助于人们好好生活，哪些因素则会造成阻碍。

为理解“好好生活”对PwD与PC的具体含义，以及影响好好生活可能性的各类因素，本研究将探究影响人们适应痴呆症病症及其带来的挑战的各类因素，以及这些因素随时间推移的变化轨迹——其中包括个体可及的资产与资源，以及其从社会支持网络中获得的支持。本研究还将分析人们应对痴呆症挑战的方式如何影响其参与活动及融入社区的能力，并考察上述所有因素与PwD和PC的福祉、生活满意度及生活质量之间的关联，以及资产与资源的变化如何影响“与痴呆症好好生活”的可能性。

本研究计划在两年周期内，从英国全境招募1500名早期痴呆症患者，并尽可能纳入其对应的主要照料者，预计最终纳入至少1000名PC。研究将通过与英国国民保健服务（National Health Service, NHS）记忆门诊联动的本地研究网络接触潜在参与者。研究人员将对所有PwD与PC进行访视，询问其关于影响自身生活满意度、福祉及生活质量的各类因素，由此收集量化数据并开展统计分析。随后，研究人员将在首次访视后的一年及两年时再次对所有参与者进行访视，以了解各类因素随时间的发展与变化，以及这些变化如何影响其生活满意度、福祉及生活质量。

在研究首年中，生活状况出现改善或恶化的较小规模参与者群体，将在研究的第二及第三年接受深度访谈。研究人员将提炼访谈内容中的核心主题，并结合量化分析结果进一步深化对研究问题的理解。本研究将组建包括PwD、PC、社会公众代表及阿尔茨海默病协会（Alzheimer's Society）代表在内的咨询网络，全程参与研究开展，以确保研究贴合PwD与PC的实际需求，并保障研究发现得到最优利用。

本研究将基于研究结果制定行动方案，明确个体、社群、健康与社会照护从业者、照护服务提供者及政策制定者可采取的措施，以提升人们与痴呆症好好生活的可能性。研究团队将与政策制定者合作，确保研究成果可对未来政策制定产生影响；将与卫生及社会照护服务的委托方、提供者及从业者合作，利用研究证据提升相关服务的有效性；将面向普通公众开展科普活动，以推动社会对痴呆症形成更具建设性的态度，并助力本地社区提升痴呆友好程度。

本研究为同类研究中首个大规模项目，将有助于培养痴呆症领域研究者的专业技能并推动相关领域的新发展，同时将为英国乃至全球的社会科学研究提供独特的资源与研究焦点。