Priorities for medication management information resources for people with dementia and carers: a community-driven approach using a modified Delphi method

BACKGROUND: Managing medications safely can be challenging for people with dementia and carers living in the community and medication errors can be a source of preventable harm. Resources to support people in medication management must address their information needs and prioritise these alongside those of broader stakeholders. OBJECTIVE: We aimed to generate content statements for inclusion in tailored medication management literacy resources for people with dementia and carers. DESIGN AND METHODS: Using a community-based participatory research approach, we established a Medication Management Guidance Partnership: collaboration between the research team, research advisory group, and partner organisations. A mixed-method approach generated 49 statements (Phase 1) then we conducted an online modified Delphi process to gain consensus (Rounds 1 and 2) and prioritise statement order (Round 3) for inclusion in resources (Phase 2). Primary criterion for consensus required ≥80% of participants rating statements as important (≥7 on 9-point Likert-type scale). Secondary criteria assessed response variability, and statements were required to meet all criteria for inclusion. RESULTS: People with dementia (n = 5), carers (n = 5), healthcare professionals and/or national consumer organisation representatives (n = 13) reached consensus on 44 statements across six information domains. 'Information about decision-making' was ranked highest, followed by 'general question prompts', 'information about common medications', 'addressing complexities,' 'getting guidance in different languages' and 'additional supports.' CONCLUSION: Our 'menu' of statements about medication management priorities, endorsed by end-users, can be used to guide development of resources to improve medication management and potentially reduce medication-related harm in this population.