Examining the clinical workflow and outcomes of integrating health information technology to educate and support dementia caregivers

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PROJECT SUMMARY. The proposed project, “Examining the clinical workflow and outcomes of integrating health information technology to educate and support dementia caregivers,” is a comprehensive study that will evaluate the integration of CareHeroes, a web- and smartphone- based health information technology (HIT) app into clinical care while supporting and empowering caregivers of adults with Alzheimer's disease and other forms of dementia (AD). AD is a leading cause of disability worldwide and the stress and challenges of managing AD symptoms often results in depression, burden, and compromised health for AD caregivers. AD also disproportionately affects patients and caregivers who are African American and Hispanic. Simultaneously, there are barriers for providers in collecting patient-related information to use for AD clinical decision making and AD caregivers report challenges to shared decision making. HIT has been suggested as a way to address the challenges associated with AD clinical care and caregiving, though little is known about how to utilize mobile technologies to link caregivers and providers for clinical care. To address these issues, the research team has developed CareHeroes, a multi-functional app that: educates AD caregivers, provides support to AD caregivers, and provides a secure platform for AD caregivers to share patient-related information with providers from the home or community setting in real-time. Following the success of its feasibility study, this project proposes to integrate CareHeroes into the clinical workflow of two memory clinics that serve large proportions of AD patients and caregivers from disadvantaged backgrounds (Hispanic, African American, rural dwelling). As part of the study, caregivers will use the app for a period of 12 months as a support for caregiving and to elevate their role as part of the care team along with providers. The specific aims of this project are to: (1) evaluate the feasibility of integrating CareHeroes into clinical workflow and the effects of its usage on clinical and shared decision making between providers and caregivers; and (2) examine the effects of usage of the app on caregivers' self-efficacy and health literacy. The findings will have high public health importance, because it will inform future efforts on implementing HIT as an adjunct to AD clinical care, which may result in improved responses to AD care and better physical and mental health outcomes for AD caregivers and patients. The multi-disciplinary team has devised a feasible intervention and evaluation plan, led by PIs, Dr. Nicole Ruggiano, Associate Professor of Social Work at the University of Alabama, and Dr. Ellen Brown, Associate Professor of Nursing at Florida International University (FIU).