Sawan Mouna J, Clough Alexander J, Jokanovic Natali, Thompson Jane, Jeon Yun-Hee, Manias Elizabeth, Schneider Carl, Chen Timothy F, Gnjidic Danijela
Pharmacy and Bank Building A15, The University of Sydney, Camperdown, New South Wales, Australia.
85 Commercial Road, Department of Infectious Diseases, the Alfred Hospital and Monash University, Melbourne, Victoria, Australia.
Alzheimers Dement. 2025 May;21(5):e70257. doi: 10.1002/alz.70257.
People with dementia and carers face challenges in understanding and managing medications at discharge. This study aimed to develop user-centered, co-designed medication management guidance tools to enhance medication management literacy post-hospitalization for these populations.
A four-phase, multi-methods study integrating experience-based co-design: (1) literature review, qualitative study, and survey; (2) expert advisory panels involving people with dementia; (3) focus groups with people with dementia, carers, and healthcare professionals; and (4) quantitative readability and suitability analysis.
Two tools were developed: a simplified medication management guide for people with dementia and a carer-focused guide. Topics included shared decision-making, informed consent, and medications that can affect cognition. Participants valued the use of simple and active language, goal-of-care discussions, and the right to second opinion. Tools were acceptable for use from admission and during hospitalization.
This study addresses gaps in medication related health literacy tools for dementia care, offering a framework for developing similar resources.
Medication management guidance tools have not included people living with dementia or their carers in their development. This study is the first to describe the co-design of medication management guidance tools for people with dementia. Two tools were generated, one for people with dementia and one for carers to extend their agency. This co-design study can serve as a framework to inform the development of future tools for people with dementia and carers.
痴呆症患者及其护理人员在出院时理解和管理药物方面面临挑战。本研究旨在开发以用户为中心、共同设计的药物管理指导工具，以提高这些人群出院后的药物管理知识水平。
一项整合基于经验的共同设计的四阶段多方法研究：（1）文献综述、定性研究和调查；（2）由痴呆症患者参与的专家咨询小组；（3）与痴呆症患者、护理人员和医疗保健专业人员进行的焦点小组讨论；以及（4）定量可读性和适用性分析。
开发了两种工具：一种是为痴呆症患者简化的药物管理指南，另一种是针对护理人员的指南。主题包括共同决策、知情同意以及可能影响认知的药物。参与者重视使用简单生动的语言、护理目标讨论以及获得第二意见的权利。这些工具在入院时和住院期间均可接受使用。
本研究弥补了痴呆症护理中与药物相关的健康素养工具方面的空白，为开发类似资源提供了一个框架。
药物管理指导工具在开发过程中未纳入痴呆症患者或其护理人员。本研究首次描述了针对痴呆症患者的药物管理指导工具的共同设计。生成了两种工具，一种供痴呆症患者使用，另一种供护理人员使用，以扩大他们的权限。这项共同设计研究可作为一个框架，为未来为痴呆症患者及其护理人员开发工具提供参考。
