An international collaboration to explore person centred approaches to dementia and the role of relationships in post diagnostic support.

许多痴呆症患者面临着挑战，试图接受这样一种社会耻辱的诊断。世界阿尔茨海默氏症报告(2011)表明，当痴呆症患者及其家人在诊断和诊断后得到充分准备和支持时，最初的震惊、愤怒和悲痛会被一种安心和赋权的感觉所平衡。然而，根据国家政策和实践，人们被告知患有痴呆症的方式(以及是否被告知)存在很大差异。有效的诊断共享是任何以人为中心的痴呆症护理方法的基本第一步。许多国家正在放弃医学方法，更多地关注以人为中心的痴呆症护理。越来越多的证据表明，痴呆症患者可以给自己的护理环境带来积极的好处和影响。对于痴呆症患者来说，这意味着参与和参与的问题，以及积极的社会关系和与社区的联系，都对他们如何接受诊断非常重要。更广泛的家庭和支持关系是痴呆症生活的整体情况的一部分，但我们对这些关系的了解是有限的。这个拟议的国际小组的研究重点将是提高我们对诊断后人际关系如何运作的理解。更多地了解人际关系是如何运作的，将有助于痴呆症研究人员、制定国家政策的人、提供支持和护理服务的人，以及痴呆症患者本身。在国际上，三个伙伴国家中的每一个都在经历和预测痴呆症患者数量的快速增长。英国现在有关于诊断共享和诊断后支持的指导和国家政策。在全球范围内，10/66痴呆症研究小组的发现显示出一幅更加复杂的图景。在果阿，注重诊断共享和以人为本的护理是最近的发展。在台湾，痴呆症患者的数量预计将大幅增加。台湾从2008年开始实施国家十年长期护理计划，所以以人为本的护理是最近的发展。拟议的项目将支持来自英国、印度和台湾的老牌和早期职业痴呆症研究人员合作。该小组将于2012年8月在爱丁堡的一个为期四天的住宅举行会议，计划与高级学者在苏格兰出席会议的时间一致。这次会议将是该小组计划和撰写研究资金申请的机会。拟议项目的总体目标是支持这一现有的学者群体形成更强大的工作关系，通过这些关系分享不同的国家观点；并同意并推进一项联合研究资助提案，该提案将探索痴呆症患者的诊断后关系。较长期的影响将集中在与赠款申请、合作和出版物有关的活动和成果上。选择合作伙伴是为了考虑到各种实践和政策背景，并建立和加强现有的学术和实践关系。徐教授来自台湾成功大学，从事痴呆症护理和护理方面的职业生涯已经很成熟。迪亚斯博士是果阿医学院预防和社会医学系的高级学者，也与包括10/66痴呆症研究小组在内的许多主要痴呆症网络有国际联系。爱丁堡大学将为希望延长访问研究员身份的海外参与者提供办公桌、计算机、图书馆和其他学术设施，以增加个人的研究能力和经验，特别是对早期职业研究人员。Heather Wilkinson博士将负责项目管理，以确保活动协调、影响评估、建立和保持网络机会和传播。CRFR知识交流团队将提供项目支持。

Many people with dementia face challenges in trying to live with such a socially stigmatising diagnosis. The World Alzheimer's Report (2011) suggests that when people with dementia and their families are well prepared and supported around the diagnosis and post diagnosis, then initial feelings of shock, anger and grief are balanced by a sense of reassurance and empowerment. However, how (and if) people are told they have dementia varies widely depending on national policy and practice. Effective diagnosis sharing is a fundamental first step in any person centred approach to dementia care. Many countries are moving away from medical approaches to give more focus on person centred dementia care. There is increasing evidence around the positive benefit and impact people with dementia can bring to their own care contexts. For people with dementia this means that issues of involvement and participation, as well as positive social relationships and being connected to their community, are all important to how they live with their diagnosis. Wider family and support relationships are part of the overall picture around living with dementia, yet what we know about these relationships is limited. The research focus of this proposed international group will be to improve our understanding of how relationships work after a diagnosis. Knowing more about how relationships work will help dementia researchers, people developing national policy, people providing support and care services, and for people with dementia themselves. Internationally, each of the 3 partner countries is experiencing and predicting rapid growth in the numbers of people with dementia. The UK now has guidance and national policy on diagnosis sharing and post diagnostic support. More globally, findings from the 10/66 Dementia Research Group show a more mixed picture. In Goa, the focus on diagnosis sharing and person centred care is a very recent development. In Taiwan the number of people with dementia is expected to increase dramatically. Taiwan has a national Ten-Year Long Term Care Plan started in 2008, so person centred care is a recent development. The proposed project will support established and early career dementia researchers from UK, India and Taiwan to work together. This group will meet at a four day residential in Edinburgh in August 2012 planned to coincide with conference attendance in Scotland by the senior academics. This meeting will be an opportunity for the group to plan and write an application for research funding. The overall aim of the proposed project is to support this existing group of academics to form stronger working relationships through which to share varied national perspectives; and to agree and take forward a joint research funding proposal that will explore post diagnostic relationships for people with dementia. Longer term impact will focus on activity and outcomes relating to grant applications, collaborations and publications. The partners have been chosen to allow for a variety of practice and policy contexts and to build on and strengthen existing academic and practice relationships. Prof Shyu, from Cheng-Gung Univesrity in Taiwan has a well established career focusing on dementia care and nursing. Dr Dias is a senior academic in the Dept of Preventative and Social Medicine, Goa Medical College and is also internationally connected to many of the major dementia networks including the 10/66 Dementia Research Group. Edinburgh University will provide desk, computing, library and other academic facilities to overseas participants who would like to extend their stay as a Visiting Fellow in order to add to the individual research capacity and experience, particularly for early career researchers.Dr Heather Wilkinson will project manage to ensure event coordination, impact assessment, building and sustaining network opportunities and dissemination. The CRFR knowledge exchange team will provide project support.