Examining the Clinical Workflow and Outcomes of Integrating Health Information Technology to Educate and Support Dementia Caregivers (Alabama)

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Project Details - Ongoing


Alzheimer’s disease (AD) and other types of dementia are leading causes of disability, and disproportionally affect patients and caregivers who are African American and Hispanic. Managing AD is challenging for numerous reasons, including the difficulty in collecting patient-related information from these patients--information needed for clinical decision making. Caregivers report challenges to shared decision making, and the stress and challenges to caregivers of managing AD symptoms often results in depression, burden, and compromised health.

The project team previously developed CareHeroes, an AD-support application, available in both English and Spanish. The application provides a secure platform for caregivers to share real-time patient-related information with the care team from homes or community settings. It provides education and other supportive resources. Following a successful previous pilot and feasibility study, this current project will integrate CareHeroes into the clinical workflow of two memory clinics (Miami, FL and Birmingham, AL) serving large populations of patients and their caregivers from disadvantaged backgrounds. Dr. Ellen Brown will lead the project at the Miami site, and Dr. Nicole Ruggiano will lead the project at the Birmingham site.

The specific aims of this project are as follows:

  • Evaluate the impact of integrating CareHeroes into AD clinical care on clinical workflow and decision making within two health care settings. 
  • Evaluate the impact of using CareHeroes on care self-efficacy and AD-specific knowledge among AD caregiving populations that are diverse in race and ethnicity, and community settings (rural and urban). 

The project team will conduct a mixed methods evaluation following integration, while also evaluating the application’s impact on clinical decision making, shared decision making, and caregiver self-efficacy and knowledge about Alzheimer’s disease. Over a 12-month period all caregiver participants will be asked to use the CareHeroes platform to enter health and behavioral information about the care recipient, provide their questions, prepare for visits to the memory clinic, use the educational and social networking tools, and assess their own burden and depression. Provider and caregiver interviews will be conducted, and outcomes will be analyzed at baseline, 3 months, 6 months, and 12 months.

Following completion of this work, the team plans to apply for funding to support a larger randomized controlled trial to assess the efficacy of using CareHeroes within a clinical setting to improve AD care quality, with a goal of eventual wider dissemination.