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

世界卫生组织(2012)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，目前的健康和社会护理可能不能最好地满足他们的需求(阿尔茨海默氏症协会，2012)。当代政策旨在赋予人们选择和资源的权力，这与早期的想法截然不同，在早期的想法中，风险被理解为某种需要控制和限制的东西。这种从管理“脆弱人群”(通过强调安全和损失)到管理脆弱情况的转变在当代使用的语言中是显而易见的，例如“风险赋能”、“积极冒险”、“合理风险”，以及在个性化等实践模式中的积极风险。我们最近完成的Healthbridge，英国国家痴呆症战略(2009年)建议的创新和赋权服务的评估产生了来自痴呆症患者的大量数据(Clarke等人，2013年)。总共完成了239次访谈(持续45-120分钟)，采访了47名被诊断为痴呆症的人和54名护理人员，最多采访了三次。这是对痴呆症患者和照顾者的最大访谈数据集。我们的目标是与痴呆症患者合作，询问现有的定性数据集，使用一种方法来挑战当前做法的假设，以指导为痴呆症患者提供赋权支持的发展。为了实现这一目标，我们的目标是：1.通过二次数据分析询问大量定性数据集-使用两个理论框架对痴呆症患者进行采访，这两个框架将为我们的分析过程提供信息：风险和韧性，以及护理伦理。2.与痴呆症患者合作，共同制作(解释)知识和共同制作在数据集中再现经验的数字故事。与合作伙伴合作，通过简报、数字故事、博客和良好做法指南，影响做法和服务，以确保工作对服务和支助的发展产生影响。该项目将是学术研究人员和非学术合作伙伴共同制作的过程，承认这一过程涉及各种但同样有价值的知识/经验基础。这项工作将有两个关键方面-从现有数据集识别理论，以及有痴呆症经验的人的参与。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氏症苏格兰。我们将共同努力，与四组痴呆症患者及其照顾者建立关系，然后他们将通过对数据集的二次分析形成新的发现。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。这些将是影响痴呆症护理政策和实践的两个研讨会的核心。为了使工作具有最大的影响力，我们将在整个项目期间和之后通过网站、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沟通。心理健康基金会、苏格兰阿尔茨海默病基金会和爱丁堡大学之间的合作创造了一个强大的组合，将影响力和进入关键政策和实践领域的机会结合在一起，以确保这些部门更长期地使用这些研究结果。

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.