Abstract
INTRODUCTION: 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. METHODS: 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. RESULTS: 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. DISCUSSION: This study addresses gaps in medication related health literacy tools for dementia care, offering a framework for developing similar resources. HIGHLIGHTS: 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.