以不同的方式对待痴呆症:来自 IDEAL 计划的一系列共同制作资源

Catherine Charlwood, Linda Clare
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摘要

本文介绍了为痴呆症患者、照护者和痴呆症照护专业人员提供的各种免费资源。所有这些资源都是作为 IDEAL 研究计划的一部分而制作的,并借鉴了这项大型队列纵向研究中产生的大量证据。文章解释了每种资源的背景、创建过程和查找位置,并引导读者查找现成可用的资源以及即将发布的资源信息。与痴呆症共存工具包》是一套面向痴呆症患者和照护者的综合资源。它还收录了许多不同的痴呆症患者和照护者用自己的语言分享的故事。该工具包被广泛应用于国家医疗服务体系、第三部门以及社区团体。我的生活问卷 "是一项新的衡量生活质量的指标,由轻度至中度痴呆症患者共同制作,并在 IDEAL 群体中进行了科学验证。颠倒的世界》最初是一出戏剧,后来成为一部纪录片,可用于提高认识、促进讨论,以及在教育或持续专业发展环境中使用。桥》是一部歌剧,讲述了痴呆症患者在诊断过程中的生活经历,以及一对夫妻在确诊后如何处理问题。这两部艺术作品都有亲身经历者参与其中,就如何真实地描绘痴呆症向表演者提供建议。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Doing dementia differently: A range of co-produced resources from the IDEAL programme
This article introduces different free resources for people with dementia, carers and professionals working within dementia care. All were produced as part of the IDEAL research programme, drawing on the wealth of evidence created as part of this large cohort longitudinal study. Explaining the background, the creation process and where to find each resource, the article directs readers towards resources readily available for use, as well as information about forthcoming resources.Four ready-to-use resources are described in detail. The Living with Dementia Toolkit is a comprehensive suite of resources for people with dementia and carers. It also features lots of different people with dementia and carers sharing their stories in their own words. The Toolkit is being widely used in NHS and third-sector settings, as well as by community groups. My Life Questionnaire is a new measure of living well which was co-produced with people living with mild-to-moderate dementia and scientifically validated with the IDEAL cohort. ‘The World Turned Upside Down’ began as a play and became a documentary film which can be used to raise awareness, promote discussion and within educational or continuing professional development settings. ‘The Bridge’ is an opera about the experience of living with dementia through the diagnostic process and how a husband and wife manage following diagnosis. Both artistic productions involved people with lived experience advising the performers on how to portray dementia authentically.
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