Co-design of medication management guidance tools for people living with dementia and carers at discharge

AbstractINTRODUCTIONPeople 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.METHODSA 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.RESULTSTwo 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.DISCUSSIONThis 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.