Empowerment to have a conversation with healthcare professionals: Co-designing the PRIME (PReparing people living with dementia and carers to Initiate conversations about their MEdicines) tool

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2026

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Ailabouni, N.J.
Hanjani, L.S.
Weir, K.R.
Reeve, E.
Abdulla, A.
Bohill, R.
Brandt, N.

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Journal of Alzheimer's Disease, 2026; 109(3):1439-1457

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Nagham J. Ailabouni, Leila Shafiee Hanjani, Kristie Rebecca Weir, Emily Reeve, Aaliya Abdulla, Ruth Bohill and Nicole Brandt

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Abstract

Background: Empowering people living with memory problems, including Alzheimer’s disease, dementia, or mild cognitive impairment, and their carers to be engaged in the shared decision-making process about their medicines could reduce their risk of experiencing medicine-related harm. More co-designed resources to support them are needed. Objective: To co-design and test a conversation-starter tool to empower people living with memory problems and their carers (consumers) to have a conversation with their healthcare professional (HCP) about their medicines. Methods: We employed a consumer participation method with an eleven-member Steering Group consisting of six consumers and five HCPs from Australia and Maryland, United States of America.We conducted one-on-one interviews with consumers and HCPs to test the tool. We analyzed data deductively using the integrated-Promoting Action on Research Implementation in Health Services (i-PARIHS) framework and the Communication-Health Information Processing (C-HIP) model. Inductively, we also drew emergent themes that did not fit within the i-PARIHS. Results: We successfully co-designed the PRIME tool and recruited 35 participants (26 consumers; 9 HCPs) to improve the tool’s readability and comprehensibility. We identified four major themes including: Theme 1: Variable consumer self-advocacy; Theme 2: Value of the tool; Theme 3: Changing behavior, empowerment, and motivation; Theme 4: Future use, dissemination, and implementation. Conclusions: Our participants valued the PRIME tool as an empowerment resource. They believed it would remind them of their permission to ask questions about their medicines. This may lead to a closer alignment of medicines with a person’s goals of care.

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© The Author(s) 2025. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage). Request permissions for this article.

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