Innovative Collaboration: Brain CareNotes App Signals a New Era in Health Care

According to a press release published by EurekaAlert!, researchers at the Regenstrief Institute and Indiana University have developed an app called Brain CareNotes to support informal caregivers of dementia patients. The app, created by Richard Holden, PhD, MS, and Malaz Boustani, MD, MPH, aims to alleviate the burden on the estimated 11 million family members providing care to the 50 million people globally affected by dementia.  

With the number of Americans living with dementia expected to more than double by 2060, reaching 13.8 million, the app addresses the need for resources to help caregivers manage their health and cope with the psychological and behavioral symptoms of dementia. 

Brain CareNotes, an evidence-based app, underwent real-world testing and involved caregivers in its development. The app is designed to be user-friendly and can be accessed on various devices, such as cell phones, tablets, or computers. The technology is now being commercialized, with researchers seeking to license it to health care systems, health insurance companies, and other entities interested in supporting caregivers. 

The central feature of Brain CareNotes is the involvement of professional care coaches who provide guidance and support to caregivers. These caregivers often face challenges such as being under-trained, under-resourced, and overwhelmed. By offering strategies and coaching, the app aims to decrease caregivers' perceived burden and depressive symptoms, enhancing their ability to provide better care and support. 

The app's comprehensive approach includes education, symptom tracking, and interaction with clinical experts, distinguishing it from other available apps. A study conducted by Dr Holden and colleagues in 2022 evaluated 17 existing apps for caregivers of individuals with dementia, finding them of "minimally acceptable quality" on average and unlikely to meet caregiver needs. Brain CareNotes addresses these gaps and is expected to provide a more holistic solution for caregivers. 

Researchers are conducting a large clinical trial to assess whether Brain CareNotes reduces health care costs and unplanned health care use while decreasing the burden and depression for caregivers. The ultimate goal is to support family caregivers, recognizing their crucial role in the treatment plan and their potential health challenges.  

The analogy of the family caregiver as a pilot is presented, emphasizing the need for skills, tools, and outside support to navigate the challenges of caring for individuals with dementia. Brain CareNotes is a valuable tool, akin to an air traffic controller, offering essential guidance and support to family caregivers. 

The collaboration between the researchers and the software consulting firm DeveloperTown resulted in a web-based application that builds upon earlier iterations of Brain CareNotes. The app represents a step forward in healthcare solutions designed to support family caregivers better, recognizing their importance in the care ecosystem. The hope is that Brain CareNotes is the first in a series of apps addressing the critical needs of caregivers in the healthcare space. 

Reference 

Brain CareNotes telehealth app supports dementia caregivers. EurekAlert! Published November, 14, 2023. Accessed November 14, 2023. https://www.eurekalert.org/news-releases/1007875