McConnell Tracey, Best Paul, Sturm Tristan, Stevenson Mabel, Donnelly Michael, Taylor Brian J, McCorry Noleen
School of Social Science, Education and Social Work, Queen's University Belfast, UK.
School of Natural and Built Environment, Queen's University Belfast, UK.
Dementia (London). 2020 Aug;19(6):1974-1996. doi: 10.1177/1471301218814393. Epub 2018 Nov 23.
Involving people with dementia in decision-making is widely accepted as a means of empowering them to lead more independent lives and have more meaningful roles in shaping their care. However, there is a need to conduct rigorous evaluations of empowerment-driven services and policies in order to develop a deeper understanding about how to optimise successful implementation. This paper presents the results of an evaluation of Dementia Northern Ireland, an organisation initiated and led by people with dementia. We used a realist evaluation approach that comprised interviews with 15 people with dementia, three staff and two board members, ethnographic observations, along with documentary analysis to identify 'what works, for whom, under what circumstances'. The analysis used realist logic to build up context-mechanism-outcome configurations. The Dementia Northern Ireland service model of empowerment revolved around the formation and maintenance of social groups of people with dementia. Facilitators, recruited and selected by people with dementia, supported six groups, consisting of one to four members with mild to moderate cognitive impairment. Facilitators helped expand empowerment groups, facilitate decision-making, awareness raising and consultation opportunities with group members. The 'Empowerment Groups' appeared to lead to the development of a shared social identity and a sense of collective strength as indicated by interview and observational data demonstrating an activist mentality among group members to challenge the stigma surrounding dementia. Group members also reported improved quality of life. Widespread implementation of the empowerment model has the potential to lead to reduced stigma and greater social inclusion, increased involvement of people with dementia as active co-producers of policy and service development, better services and support. This case study of Dementia Northern Ireland illustrates that there are boundaries and challenges to empowerment in terms of requiring additional support from staff without dementia. However, despite these challenges, empowerment-driven organisations can and should be committed to involving members in lead roles and key decision-making.
让痴呆症患者参与决策被广泛认为是一种使他们能够过上更独立生活并在塑造自身护理方面发挥更有意义作用的方式。然而，有必要对以赋权为导向的服务和政策进行严格评估，以便更深入地了解如何优化成功实施。本文介绍了对北爱尔兰痴呆症组织的评估结果，该组织由痴呆症患者发起并领导。我们采用了一种现实主义评估方法，包括对15名痴呆症患者、3名工作人员和2名董事会成员进行访谈、人种志观察以及文献分析，以确定“什么有效，对谁有效，在什么情况下有效”。分析运用现实主义逻辑构建背景 - 机制 - 结果配置。北爱尔兰痴呆症组织的赋权服务模式围绕痴呆症患者社会群体的形成和维持展开。由痴呆症患者招募和挑选的协调员支持六个小组，每个小组由一到四名轻度至中度认知障碍成员组成。协调员帮助扩大赋权小组，促进决策、提高认识以及与小组成员的协商机会。访谈和观察数据表明小组成员具有挑战围绕痴呆症的污名的积极心态，这显示出“赋权小组”似乎促成了共同社会身份的发展和集体力量感。小组成员还报告生活质量有所提高。赋权模式的广泛实施有可能减少污名并增强社会包容性，增加痴呆症患者作为政策和服务发展的积极共同生产者的参与度，改善服务和支持。北爱尔兰痴呆症组织的这个案例研究表明，在需要无痴呆症工作人员提供额外支持方面，赋权存在界限和挑战。然而，尽管存在这些挑战，以赋权为导向的组织能够而且应该致力于让成员担任领导角色并参与关键决策。
