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

More than 6 million people in the United States had Alzheimer's disease or a related dementia (ADRD) in 2022, most cared for by family members, friends, or other unpaid caregivers. Because caring for people living with dementia is complex, caregivers often report depression and compromised health. Managing dementia is challenging for many reasons, including the difficulty in collecting patient-related information from these patients—information needed for clinical decision making. African and Latino populations experience more challenges and barriers than non-Latino whites, including being more likely to be impacted by ADRD, underdiagnosed, and misdiagnosed.

The researchers previously developed CareHeroes, an application (app) to support dementia care, available in both English and Spanish. CareHeroes provides education and allows for tracking and sharing of information about the impacted person between caregivers and providers. This research integrated CareHeroes into the clinical workflow of two memory clinics serving large populations of patients and their caregivers from disadvantaged backgrounds, including those from rural communities. 

The specific aims of the research were 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 caregivers that are diverse in race and ethnicity, and community settings (rural and urban). 

Caregivers and providers used the app over 12 months. Caregiver burden, depression, and self-efficacy were evaluated at baseline and 3, 6, and 12 months. Because of the COVID-19 pandemic, the researchers had greater difficulty than expected in recruiting and retaining caregivers for the study. Therefore, the team was not able to collect enough data for analysis at 6 and 12 months. The move to virtual care meant that providers were unable to integrate the app into their workflow, and CareHeroes became a low priority for clinic staff who were experiencing disruptions to both their work and home lives. 

Focus groups revealed differing desires for integrating the app into clinical workflow, such as one site wanting to enter data into the app and another preferring to scan in data; one wanted alerts when caregivers entered new information, while the other did not. Both sites agreed that the app would improve communication between providers and caregivers. The features used the most by caregivers were the chatbot resource links, a caregiver burden inventory, and a memory and behavior problem checklist.  The reminder feature and depression screen were used less frequently. 

The researchers found a statistically significant association between depression and caregiver burden based on income at baseline, but those differences were not present at 3 months. It was noted that the pandemic itself may have confounded caregiver mental health during this time. 

Despite the limitations, the study was completed and showed how such an app could be used to support caregiving while data was generated that may be used for additional research in this area. The researchers plan to look in the future at the feasibility and efficacy of this functionality to support and empower caregivers in working through health and long-term care systems.