Helping the helpers: User-centered technology to aid caregiver management of medications for people with ADRD

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PROJECT SUMMARY A majority of the nearly 6 million people living with Alzheimer's disease and related dementias (ADRD) in the US are reliant upon informal (family and friend) caregivers to help manage their medications. Comorbidities are highly prevalent in people with ADRD, often requiring the management of multiple simultaneous medications and complex medication regimens. Caregivers are often untrained, under-resourced, and unsupported to perform the medication tasks people with ADRD rely upon. Studies have reported that caregiver-assisted medication management is associated with caregiver burden and stress and potentially inappropriate medication use in a third of people with ADRD. Unfortunately, most caregiver support interventions do not address ADRD caregivers' roles in managing medications for people with ADRD. Moreover, the few interventions for ADRD caregivers addressing medications do not leverage information technology (IT), despite national recognition of IT's vital role in ADRD care and caregiving. To address this gap, the intent of the proposed project is to develop an IT-based intervention to support caregivers managing medications for people with ADRD. According to the NIH Stage Model, behavioral interventions including IT solutions must be built upon a solid empirical record. Therefore, we propose to employ the three phases of user-centered design to address the first two stages of the NIH Stage Model. First, we will use a combination of user-centered design methods to conduct a user needs assessment (Stage 0) of ADRD caregivers who manage medications for people with ADRD. Second, we will use participatory co-design (Stage IA) to co-design a prototype IT intervention to support caregiver-assisted medication management collaboratively with ADRD caregivers. Third, we will conduct user testing (Stage IB) to feasibility test the prototype IT intervention with ADRD caregivers. User-centered design is the gold standard (e.g., FDA-mandated for all medical devices) process for designing products by involving representatives of the end-user population to better address user needs. Completion of the aims will lead to a hybrid efficacy/effectiveness Stage 3 randomized clinical trial of the intervention, powered to test changes in medication adherence and safety, with secondary outcomes of neuropsychiatric symptoms, acute care utilization, and caregiver burden.