Faculty of Medical Sciences, Population Health Sciences Institute, Campus for Ageing and Vitality, Newcastle University, Newcastle upon Tyne, United Kingdom.
South Cloisters, University of Exeter, Exeter, United Kingdom.
PLoS One. 2021 Dec 20;16(12):e0260506. doi: 10.1371/journal.pone.0260506. eCollection 2021.
There has been a shift in focus of international dementia policies from improving diagnostic rates to enhancing the post-diagnostic support provided to people with dementia and their carers. There is, however, little agreement over what constitutes good post-diagnostic support. This study aimed to identify the components of post-diagnostic dementia support.
We adopted a qualitative design using interviews, focus groups and observation to explore the perspectives of key stakeholders on the content of post-diagnostic dementia support. Purposive sampling was used to identify sites in England and Wales recognised as delivering good practice. Participants included 17 people with dementia, 31 carers, 68 service managers or funders, and 78 frontline staff. Interviews and focus groups were audio recorded and transcribed for analysis. Forty-eight sessions of observation were completed and recorded in fieldnotes. Components were identified through an inductive, thematic approach and cross-checked against national guidelines and existing frameworks; they were subsequently critically reviewed by a range of experts and our mixed stakeholder panel.
Twenty distinct components of post-diagnostic support were identified, related to five themes: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support. The first and last of these were cross-cutting themes facilitating the delivery of a unique constellation of components of post-diagnostic support to each individual living with dementia or dyad at a particular time.
Our work offers an empirically based framework to inform the development and delivery of holistic, integrated and continuous dementia care from diagnosis to end of life. It highlights the relevance of many components to both people living with dementia and their carers. Since the framework was developed in England and Wales, further research is needed to explore the relevance of our components to other sectors, countries and care systems.
国际痴呆症政策的重点已经从提高诊断率转移到为痴呆症患者及其照护者提供更好的诊断后支持。然而，对于什么是良好的诊断后支持，仍存在较少的共识。本研究旨在确定诊断后痴呆症支持的组成部分。
我们采用定性设计，通过访谈、焦点小组和观察，探索关键利益相关者对诊断后痴呆症支持内容的看法。采用目的性抽样方法确定在英格兰和威尔士被认为提供良好实践的地点。参与者包括 17 名痴呆症患者、31 名照护者、68 名服务经理或资助者以及 78 名一线工作人员。访谈和焦点小组进行了录音，并进行了转录以供分析。完成了 48 次观察，并在实地记录中进行了记录。组件是通过归纳、主题方法确定的，并与国家指南和现有框架进行交叉检查；随后由一系列专家和我们的混合利益相关者小组进行了批判性审查。
确定了 20 个不同的诊断后支持组件，与五个主题相关：及时识别和管理需求；了解和管理痴呆症；情绪和心理健康；实际支持；以及整合支持。前两个和最后一个主题是贯穿始终的主题，有助于为每个患有痴呆症或特定时间内的双患者提供独特的诊断后支持的独特组合。
我们的工作提供了一个基于经验的框架，为从诊断到生命结束提供整体、综合和连续的痴呆症护理提供信息。它强调了许多组件对患有痴呆症的人和他们的照护者都具有相关性。由于该框架是在英格兰和威尔士开发的，因此需要进一步研究以探索我们的组件对其他部门、国家和护理系统的相关性。
