New app aims to ease burden on caregivers of dementia patients

With the number of Americans living with dementia expected to more than double to 13.8 million by 2060, two Regenstrief Institute research scientists and Indiana University professors have created an app to ease the burden on caregivers.

In 2021, more than 11 million family members or other unpaid, informal caregivers provided nearly 16 billion hours of care to people with dementia. Globally, approximately 50 million people are affected by this neurocognitive disorder.

Richard Holden, PhD, M.S., and Malaz Boustani, M.D., MPH, have created and real-world tested the evidence-based Brain CareNotes. This easy-to-use app will help informal caregivers of dementia patients better manage both their own health and the many psychological and behavioral symptoms of dementia. Caregivers have been involved throughout the creation and testing of the comprehensive app.

Dr. Holden and Dr. Boustani are both research scientists with Regenstrief and professors with IU School of Medicine. Dr. Holden is also a professor with Indiana University School of Public Health-Bloomington.

The researchers are now commercializing the technology, seeking to license it to healthcare systems, health insurance companies and others who understand the benefits of keeping caregivers healthy and enabling them to better manage patients.

The centerpiece of Brain CareNotes is the professional care coaches supporting the caregivers, who are often under-trained, under-resourced, under-supported and overwhelmed. The app can be used by any device -; cell phone, tablet or computer -; that can open a website, regardless of the device's operating system. Building upon earlier iterations of Brain CareNotes, the web-based application was developed by software consulting firm DeveloperTown.

Brain CareNotes is expected to decrease caregivers' perceived burden and depressive symptoms by providing them with strategies and coaching that improve their own health as well as their social support and ability to provide better care.

Difficulty communicating, difficulty adjusting and mood issues are hallmarks of dementia but may also be related, in part, to how a caregiver responds to the person with dementia. As Brain CareNotes helps the caregiver improve care, behavioral and psychological symptoms of the patient may improve.

You might think of the family caregiver as a pilot. Every good pilot needs skills, tools and outside support to safeguard the plane, the passengers and the crew. And like the air traffic controller who supports the pilot, the coach provides essential guidance and support to the family caregiver via Brain CareNotes."

Richard Holden, PhD, M.S.

In 2022, Dr. Holden and colleagues evaluated the 17 apps available in the marketplace targeted to caregivers of individuals with dementia. Studying engagement, functionality, aesthetics, information and subjective quality of the apps, they found, on average, the apps to be of "minimally acceptable quality" and unlikely to meet caregiver needs. While 71 percent of existing apps included education, only 12 percent included tracking symptoms, and only 6 percent included interaction with clinical experts. Brain CareNotes includes all of these domains: education, symptom tracking and interaction with clinical experts.

The Brain CareNotes team is conducting a large clinical trial investigating whether use of the responsive app decreases costly and unplanned healthcare use while decreasing burden and depression for caregivers as they help manage symptoms of patients living with dementia.

"Informal caregivers face an extremely difficult, often round-the-clock task: Caring for individuals who may no longer remember who they are and have more and more trouble communicating their needs," said Dr. Boustani, a geriatrician. "Brain CareNotes helps those who provide care to meet the often overwhelming challenges of caregiving."

"We are just starting to design solutions in healthcare to better support the family caregiver," said Luke Pittman, M.D., vice president of healthcare solutions for DeveloperTown. "There is a substantial movement in modern care to recognize the caregiver as party to the treatment plan, as well as maybe even a patient themselves. Our team was excited to partner with the Brain CareNotes team to launch the first of what we hope will be a series of apps in this space addressing this important need."