Researchers commercialize dementia app being used by Hoosier caregivers
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While the person a dementia is typically the main focus when families weather the medical crisis, the patient’s health often hinges instead on the health of the caregiver—typically a spouse or adult child.
Experts say the physical and emotional toll of providing daily high-intensity care can cause the caregiver’s health to suffer—a domino effect that can lead to the person with dementia being hospitalized or put in a nursing home. An app developed in Indiana devoted to caregiver health is now hitting the market, and nearly 100 Hoosier caregivers are providing its biggest test run yet.
Backed by two decades of research, the Brain CareNotes app is the brainchild of Dr. Richard Holden and Dr. Malaz Boustani, Indiana University professors and research scientists at the Regenstrief Institute in Indianapolis. Now available to license, the app aims to help the more than 11 million Americans providing unpaid care for loved ones with Alzheimer’s disease or other dementias.
“When the caregiver is under-prepared, under-trained and under-supported, the health of the person with dementia gets worse, so the caregiver is an essential part of the equation. We want to give them as much support as possible,” says Holden. “We want the caregiver to have the best health possible—because they deserve it—and so they can be the best caregiver they can be.”
The Alzheimer’s Association says dementia caregivers often go years without prioritizing their own physical health, experience chronic stress related to taking care of their loved one, and 40% report symptoms of depression.
About 100 Hoosier caregivers are now using the Brain CareNotes app as part of a trial to measure its impact compared to another app on the market. Holden says one of the best features of Brain CareNotes is that caregivers are connected with at least one professional care coach.
“The coach observes the symptoms and figures out how to address each of those symptoms by creating a plan of care that’s shared between the caregiver and coach,” says Holden. “The coach’s job is to keep the caregiver on track, provide tips and strategies, as well as motivate the caregiver and break down barriers.”
Holden says the app is specially designed to be easy for seniors to use.
Holden says another feature “baked into” the app is a biweekly assessment that evaluates the symptoms and health of both the patient and caregiver. He notes the “highly validated, rigorous” assessment of symptoms is just one example of the app being built on research that began more than 20 years ago.
“That’s when there was no app; there was just a clinical model. We showed we were able to save money and improve health outcomes for both the caregiver and the patient. You can’t beat that kind of evidence,” says Holden. “There are a lot of apps out there that seem good…but they’re not based on rigorous research demonstrating effectiveness and cost savings, whereas ours is.”
While a study funded by the National Institutes of Health already showed Brain CareNotes was beneficial compared to conventional care, the current trial will see if Hoosier caregivers report a lower perceived burden, fewer symptoms of depression and fewer unplanned hospitalizations or ER visits. The researchers theorize as the caregiver is able to provide better care, the behavioral and psychological symptoms of the patient will improve.
After years of development, the app is now ready for commercialization. Its visionaries are exploring a variety of paths to market, such as licensing the app to health care systems or health insurance companies, or a hybrid approach in which the user pays part of the cost.
Holden explains why the team believes health systems and insurers could realize great value in using the app.
While there are nearly 20 other apps on the market that focus on caregivers, Holden says Brain CareNotes is the only one that checks three boxes: education, symptom tracking and interaction with clinical experts.
Holden admits the complex process of bringing the app to market is “a little intimidating,” because “researchers usually excel in research, not in commercialization.” Also with expertise in human-centered design, he’s motivated by taking the team’s research “beyond the bookshelf” to impact caregivers and their loved ones.
“A slogan in my group is ‘better health by design.’ Better health is why we’re in this game,” says Holden. “For even one person to have one less hospitalization because of the app, or a better night’s sleep, or feel a little less stressed—that makes it worth it. And with the commercialization efforts, we hope it won’t be just one person.”