Inciting dialogue and disruption - developing participatory analysis of the experience of living with dementia and dementia care

世界卫生组织（2012年）认为，痴呆症是我们这个时代最大的健康挑战。痴呆症患者的日常生活极其复杂，目前提供的健康和社会护理可能无法最好地满足他们的需求（阿尔茨海默氏症协会，2012年）。当代政策旨在赋予人们选择和资源的权力，这与早期将风险理解为需要控制和限制的观念大不相同。这种从管理“弱势群体”（通过强调安全和损失）到管理弱势情境的转变在当代使用的语言中很明显，例如“风险实现”、“积极承担风险”、“合理风险”和个性化等实践模型中的积极风险。我们最近完成了Healthbridge，对英国国家痴呆症战略（DH 2009）推荐的创新和赋权服务的评估，从痴呆症患者那里获得了大量数据（Clarke et al . 2013）。总共完成了239次访谈（持续45-120分钟），对47名痴呆症患者和54名护理人员进行了三次访谈。这是目前所能找到的对痴呆症患者和护理人员进行访谈的最大数据集。我们的目标是与痴呆症患者合作，使用一种方法来质疑现有的定性数据集，该方法旨在挑战当前实践的假设，为痴呆症患者提供支持的发展提供信息。为实现这一目标，我们的目标是：通过二级数据分析，通过对痴呆症患者访谈的大型定性数据集进行询问，使用两个理论框架，这将为我们的分析过程提供信息：风险和恢复力，以及护理伦理。2. 2 .与痴呆症患者合作，共同制作（解释）知识，并共同制作再现数据集中经验的数字故事。与合作伙伴合作，通过简报文件、数字故事、博客和良好做法指南，影响实践和服务，确保工作对服务和支持的发展产生影响。该项目将是学术研究人员和非学术合作伙伴之间共同生产的过程，承认这一过程中涉及的各种各样但同样宝贵的知识/经验基础。这项工作将有两个关键方面——从现有数据集中识别理论，以及与有痴呆症经历的人一起参与。这些联系在一起，使痴呆症患者能够成为分析数据过程的一部分。这项工作的合作伙伴是精神健康基金会和阿尔茨海默苏格兰。我们将共同努力，与四组痴呆症患者及其护理人员建立关系，然后他们将从数据集的二次分析中形成新发现。我们将与痴呆症患者一起，创造结合个人经历和分析数据的数字故事。这将是与影响痴呆症护理政策和实践的人一起举办的两个讲习班的核心。为了使工作产生最大的影响，我们将通过网站、博客评论、简报和良好实践指南与广泛的学术和非学术受众进行交流。精神健康基金会、苏格兰阿尔茨海默病和爱丁堡大学之间的合作创造了强大的影响力和进入关键政策和实践领域的机会，以确保在这些部门长期使用研究结果。

The World Health Organisation (2012) argue that dementia is the greatest health challenge of our time. The day-to-day lives of those living with dementia is incredibly complex and current health and social care provision may not be best able to meet their needs (Alzheimer's Society 2012). Contemporary policies aim to empower people with choices and resources, quite different to earlier ideas in which risk was understood as something to be controlled and limited. This move from managing 'vulnerable people' (through an emphasis on safety and loss) to managing vulnerable situations is evident in the contemporary language used such as 'risk enablement', 'positive risk taking', 'reasonable risk', and positive risk in practice models such as personalisation. Our recent completion of Healthbridge, the evaluation of innovative and empowering services recommended by the National Dementia Strategy for England (DH 2009) has generated a large volume of data from people living with dementia (Clarke et al 2013). In total, 239 interviews were completed (lasting 45-120 minutes) with 47 people with a diagnosis of dementia and 54 carers interviewed on up to three occasions. This is the largest data-set of interviews with people with dementia and carers that can be found.We aim to interrogate this existing qualitative dataset in partnership with those living with dementia, using an approach that sets out to challenge assumptions of current practice to inform the development of empowering support for people living with dementia.To achieve this aim, our objectives are to:1. Interrogate through secondary data analysis a large qualitative data-set of interviews with people living with dementia using two theoretical frameworks that will inform our analytical process: risk and resilience, and the ethic of care. 2. Collaborate with people living with dementia in the co-production (interpretation) of knowledge and the co-production of digital stories which re-present experiences within the data set.3. Working with partners to influence practice and services to ensure that the work impacts on the development of services and support through briefing papers, digital stories, a blog and a good practice guide. The project will be a process of co-production between academic researchers and non-academic partners, acknowledging the varied yet equally valuable knowledge/ experience bases involved in the process. There will be two key aspects to the work - identification of theory from the existing dataset, and participation with people with experience of dementia. These link together, enabling people living with dementia to be part of the process of analyzing the data.Partners in the work are the Mental Health Foundation and Alzheimer Scotland. We will work together to develop a relationship with four groups of people with dementia and their carers, who will then shape the emerging findings from the secondary analysis of the data-set. Together with people living with dementia, we will create digital stories which combine individual experiences and the analysed data. These will be central to two workshops with people who influence policy and practice in dementia care.In order to have the greatest influence of the work, we will communicate throughout and after the duration of the project with a wide academic and non-academic audience through a website, blog commentary, briefing papers and a good practice guide. The collaboration between the Mental Health Foundation, Alzheimer Scotland and the University of Edinburgh creates a powerful combination of influence and access to the key policy and practice arenas to ensure longer term use of the findings across these sectors.