Sullivan Mary Pat, Camic Paul M, Harding Emma, Stott Joshua, Windle Gill, Davies-Abbott Ian, Crutch Sebastian J
Faculty of Education and Professional Studies, School of Social Work, Nipissing University, North Bay, ON, Canada.
Institute of Neurology, Dementia Research Centre, University College London, London, United Kingdom.
Front Dement. 2025 Jun 6;4:1565277. doi: 10.3389/frdem.2025.1565277. eCollection 2025.
There is growing awareness of people living with diverse dementia syndromes, many of whom are younger in age, with distinct support needs. Planning for increasing numbers of people living with dementia and subsequent models of support has largely overlooked this population. To address this gap, the aim was to design a Theory of Change for multi-component rare dementia support.
Intervention development frameworks underpinned the construction of a Theory of Change informed by research evidence on rare dementia support and an iterative consultation process with people with lived experience, researchers, educators and health and social care practitioners.
The Theory of Change illustrates pathways to activities for continuous and tailored support solutions, education and knowledge production. Characteristic features include relationship, connection and continuity for people with lived experience, training and networking for professionals, and relational support with a commitment to ongoing learning for the rare dementia support team.
The Theory of Change is positioned to flexibly support people affected by rare dementia, strengthen capacity within all sectors, improve service quality whilst maintaining a commitment to knowledge production and mobilization.
人们对患有各种痴呆综合征的人群的认识日益提高，其中许多人年龄较轻，有着独特的支持需求。为越来越多的痴呆症患者及其后续支持模式进行规划，在很大程度上忽略了这一人群。为填补这一空白，本研究旨在设计一种针对多成分罕见痴呆症支持的变革理论。
干预发展框架为变革理论的构建提供了支撑，该理论以关于罕见痴呆症支持的研究证据以及与有实际经验的人、研究人员、教育工作者以及健康和社会护理从业者的迭代咨询过程为依据。
变革理论阐述了实现持续且量身定制的支持解决方案、教育和知识产出活动的途径。其特征包括为有实际经验的人提供关系、联系和连续性，为专业人员提供培训和网络，以及为罕见痴呆症支持团队提供致力于持续学习的关系性支持。
变革理论旨在灵活支持受罕见痴呆症影响的人群，增强所有部门的能力，提高服务质量，同时致力于知识的产出和传播。
