Hearing the Older Adults and Caregivers Voice in Medication Optimization Initiatives

Abstract

AbstractBackgroundEngaging older adults, caregivers and family is necessary to produce relevant and meaningful evidence. Patient‐centered‐outcomes research (PCOR) engages these individuals as research partners. For instance, the process of shared decision‐making about deprescribing (reducing or stopping potentially inappropriate medications) between people living with dementia and their carers (consumers), and clinicians, is complex.MethodVarious tactics were employed by the Elder Care Medicine Network (ECMN) and stakeholder steering groups from USA and Australia. These initiatives describes efforts to increase capacity of local communities – older adults, their caregivers, healthcare providers and researchers – to participate in medication related PCOR as well as the development of a tool (PRIME) to help with deprescribing medications for individuals with dementia.ResultThere are over 120 active participants in the ECMN. After they shared their PCOR training needs, trainings were held as Discussion sessions where Council members and network participants shared their medication experiences and talked about participating on a PCOR research team. Network participants also identified what they felt were meaningful research questions on medication‐related PCOR (video). Additionally the PRIME tool was developed via an iterative process utilizing one‐to‐one semi‐structured interviews and a focus group session with 39 participants (people living with dementia, carers, and clinicians) to determine the usability and comprehensibility of the PRIME tool. Iterative changes were made to improve the content and layout of the tool.ConclusionThese two initiatives illustrate the importance of co‐design and incorporating the older adults and caregivers voice in medication optimization efforts in individuals with dementia.