Richard Holden, professor at the IU School of Public Health, and Malaz Boustani, professor of aging research at the IU School of Medicine, teamed up to create a telehealth application called Brain CareNotes, aimed at supporting caregivers of dementia patients.
The mobile only application features an interface between a care coach, a live human who works with caregivers through the app to offer them support, and the caregivers of dementia patients, who could be a family member or a hired caretaker primarily tending to the patient. Brain CareNotes facilitates secure communication between these two groups, guiding caregivers through inquiries about the patient's distress levels and troubling behavioral and psychological symptoms. Depending on the caregiver's responses, the app provides the most appropriate note card recommendations on the most effective ways to address the situation or symptoms.
Boustani said he developed a dementia care model in 2006 that reduced the behavioral symptoms like agitation and stress in the caregivers through clinical research, which then went from paper to practice at Eskenazi Health. He said the main drawback of the initial versions of the model was that only patients within a 30 -mile radius of Eskenazi Health could access it. He said this prompted the urgency of leveraging the internet to reach more people through a mobile application.
Holden said he met and started working with Boustani at Eskenazi Health in 2016, where he witnessed hundreds of people benefiting from Boustani’s established treatment model and wanted to scale that number to be thousands, and perhaps millions.
Holden said the two received funding in 2017 from the National Institute of Health to start developing the app. The team eventually received another grant from NIH in 2019 to do a pilot study of the application, which involved a clinical trial that ended in 2021, much later than expected due to complications caused by the COVID-19 pandemic. He said the trial gave them a chance to evaluate the prototype and ensure their concept worked as intended prior to scaling it. Furthermore, he said the team conducted several rounds of user testing by care coaches through a clinical trial in 2019, which produced fruitful feedback to improve the app.
“My father has dementia and I live away from him,” Holden said. “I’ve seen the effect that my mother’s role as his primary caregiver has on her and it stresses me out too.”
Boustani, whose father was also diagnosed with dementia, said he wanted to make the telehealth application affordable and easy to use for everyone across the globe. He said his mother is the primary caregiver to his father in Syria, where he said health infrastructure is not developed well enough. He said one way he aimed to achieve this was by building an Arabic version of the application which could be used by people in developing areas like Syria.
“The app should be for everyone, for cheap and for now,” Boustani said. “Every day I don’t work on it, I could be saving many dementia patients around the world, so the speed is also very important to me.”
Holden said they received nearly $4 million through another grant in 2022 to expand the app across the United States by 2027. He said that shortly after receiving this grant they partnered with software consulting company DeveloperTown in Indianapolis to develop and maintain the app.
Boustani said the app measures the caregiver’s biocycle needs and accordingly recommends tips and solutions they can use to help them increase their coping with the cognitive and psychological disabilities of their loved ones. For example, the app would recommend a tailored sleep pattern for patients experiencing disrupted sleep. The app ensures the caregiver will have 24/7 support and will tell them if their care plan for the patient is working and how to adjust it.
Holden said the app differentiates itself from competitors in three key areas.
He said other apps on the market lack the prior research that went into the effectiveness of an evidence-based model. He said they conducted a survey of existing apps in 2022, and found that, on average, apps are of minimally acceptable quality.
He said the app is more than just educational texts in a platform, with the information being broken down into bite-sized pieces involving a valid assessment of dementia symptoms. When a caregiver wants to assess the patient, they can avail the assessment tool backed by data they researched themselves. The tool involves structured questionnaires about the patient’s symptoms that can be tracked over time.
Lastly, he said the app introduces care coaches. He said the app began with a few care coaches, who held at least a relevant bachelor's degree and were provided specialized training. The team then involved these coaches in the design process as informants, with some of them being co-designers.
He said their focus is on comprehending the market dynamics, evaluating the potential success of the product and identifying key factors such as targets, risks and reimbursement. He said they are actively seeking clients.
Boustani said the Centers for Medicare & Medicaid Services approved a payment plan in July for the model upon which the app was built to cover their services for the entire country, and he hopes Brain CareNotes will be part of that solution.
Miriam Rodriguez, an associate professor at the IU School of Public Health, is overseeing the bulk of operations involved in the development of the app as well as the clinical trials. She said she is aiming to recruit 160 caregiver participants for the clinical trial in the next five years. She said half of them would be receiving the support of the app, while the other half would receive support from other telehealth apps, and they would follow up in six months and 12 months to get their feedback.
“I love the scalability of the app and I think it is important to reach people in areas lacking health infrastructure,” Rodriguez said. “I am personally invested in the Hispanic community benefitting from the app, so I’m simultaneously trying to ensure that the intervention is culturally supported.”