LivEDem: Centring the Lived Experience of Dementia within Policy, Practice and Community Development

痴呆症现在被广泛认为是全球健康挑战。据估计，目前全世界有5000万人患有痴呆症，这一数字预计在2030年将达到8200万，到2050年将达到1.52亿。大约三分之二的痴呆症患者生活在社区，随着世界许多地区的护理和支持采用社区重点，这一总体比例正在上升。然而，痴呆症患者被排除在社区之外，并且在历史上一直被政策制定，规划，设计和服务提供所忽视。最近的大流行揭示了这种排斥现象，表明痴呆症患者在获得医疗和社会护理服务时面临不利条件。事实上，在世界各地，痴呆症患者对危机的处理或其随后对他们的护理和支持的影响几乎没有影响。“痴呆友好社区和倡议”（DFCIs）国际议程的引入为解决这些不平等问题和更好地支持痴呆症患者积极参与当地社区提供了可能。因此，该提案将探讨DFCI如何解决排斥问题，同时支持痴呆症患者在社区内发表意见。我们认识到DFCI运动正处于发展的早期阶段，因此我们的研究将为DFCI的循证国际网络建立基础，促进协调和沟通。我们的国际团队来自三个国家（加拿大，德国和英国），并建议提供一个深入的社会科学研究计划，该计划将调查痴呆症患者的不同生活经历如何帮助创建包容性社区。这一时机很重要，因为许多国家和地区开始重新思考在大流行之后以及在预期其他新出现的全球挑战的情况下如何使用和组织公共空间。拟议的研究将使痴呆症患者和无薪护理人员能够影响这些变化。我们将学习痴呆症患者可以参与社区一级的政策制定，规划和委托的最有效和最支持的方式。该研究将解决社会隔离问题，在当地和全球痴呆症患者网络之间建立联系。从长远来看，我们的目标是通过展示痴呆症患者在社区内所做的重大社会贡献，重新定义公众对痴呆症的认识和理解。我们希望确保社区包容患有痴呆症等疾病的人，我们将提供证据，指导急需的基于社区的服务和支持的改革。最终，这项研究将为更广泛的议程提供信息，以创建能够抵御未来潜在威胁的社区，使其更具弹性和公平性。

Dementia is now widely recognised as a global health challenge. An estimated 50 million people are currently living with dementia worldwide and this number is estimated to reach 82 million in 2030, and 152 million by 2050. Approximately two thirds of people with dementia live in the community, and this overall percentage is rising as care and support adopts a community focus in many parts of the world. Yet, people with dementia have been excluded from participating in their communities and historically have been overlooked by policy-making, planning, design and service provision. The recent pandemic has shed light on this exclusion, showing that people living with dementia face disadvantage when accessing health and social care services. Indeed, around the world, people with dementia have been afforded little influence over the handling of the crisis or its subsequent impact upon their care and support. The introduction of an international agenda for ‘dementia-friendly communities and initiatives’ (DFCIs) holds out potential for tackling these inequalities and better supporting people with dementia to actively participate in their local communities. As such, this proposal will explore how DFCIs can tackle exclusion while supporting people living with dementia to have their say within their communities. We recognize that the DFCI movement is at an early stage of its development, so our research will create the foundation for an evidence-informed international network of DFCIs promoting co-ordination and communication. Our international team is drawn from three countries (Canada, Germany, and UK) and proposes to deliver a programme of in-depth social science research that will investigate how the diverse experiences of living with dementia can help create inclusive communities. The timing is important as many nations and regions begin to rethink how public spaces are used and organized in the wake of the pandemic and in anticipation of other emerging global challenges. The proposed research will empower people living with dementia and unpaid carers to influence these changes. We will generate learning about the most effective and supportive ways that people with dementia can be involved in policy-making, planning and commissioning at the community level. The research will tackle social isolation, building connections between networks of people with dementia, locally and globally. In the longer-term we aim to redefine public awareness and understanding of dementia by demonstrating the significant social contribution made by people living with dementia within their communities. We want to ensure that communities are inclusive of people with conditions such as dementia and we will generate evidence to guide much-needed reform to community-based services and support. Ultimately, the research will inform a broader agenda for creating communities that can withstand potential future threats, becoming more resilient and equitable.