This is a follow-up article to “An Invitation to Caregivers of Patients with Dementia” from the winter issue of The Stanford Retiree Insider.

When Stanford students Mersina Simanski, ’15, and Tyler Haydell, ’15, decided to create a mobile app to help caregivers in their fall semester mobile health class, they had no idea how it would turn out. Several months later, after collaborating with School of Medicine faculty and Palo Alto VA Hospital staff, and adding two more Stanford engineering students to their project, Mersina says it’s been one of the most rewarding experiences of her life.

“This is not a computer design problem; it’s really a human design problem. For us as an engineering team, the challenge is: what system can we build to help improve your ability to be a caregiver?”

Challenges of Informal Caregiving

“In our class we learned that 60% of the cost of care for patients is informal caregiving, but these caregivers little to no time or formal training and can get overwhelmed on how best to help their loved one,” says Mersina. For caregivers of patients with dementia, an umbrella term for diseases that cause cognitive decline and interfere with daily life, caregiving can be especially challenging.

So Mersina and Tyler set out to build an app that could help informal caregivers of people with dementia, initially thinking it would be a time management tool. Their faculty advisors, however, recommended they first talk to caregivers and staff of senior assisted living communities to listen to their experiences and learn what challenges, resources and preferred activities they had.

Engaging Loved Ones with Dementia

After several weeks of interviewing caregivers of people with Alzheimer's and other types of dementia, Mersina and Tyler realized that these caregivers’ main challenge was not time management but how to keep their loved ones engaged. The Stanford seniors then changed direction and built the app to deliver best caregiving practices through activity recommendations. This included shifting the concept of an activity as a complicated, multi-step process to a “day-to-day functional task” in a loved one’s routine. “All things can be made into  an activity; it just takes a little creativity,” Mersina explains. “For example, setting the table or making the bed with a loved one can be made into an engaging activity.”

The pilot involved 10 caregivers and used manual SMS texting to send them suggestions and follow-up questions at certain times throughout the day for two weeks. Because patients differed in their range of dementia and care needed, Mersina and team identified 10 levels of care needed among the patients and tailored the caregiver activity suggestions and questions to them. The next round of user testing involved 40 people during a 4-week session, with automated texts.

Formative User Testing

Because of the progress and promising results of the app, called Formative, Mersina plans to continue with the project at the Palo Alto VA Hospital’s Caregiver’s Technology Lab after graduation.

Formative’s goals, Mersina says, are to help track physical information about patients and their interaction with their caregivers over time, which can then be used to adjust and improve the patients’ day to day lifestyle. “Ultimately, we hope Formative will help measure and increase the patient’s and caregiver’s self-efficacy. That’s what success would look like to us.”

To learn more about Formative, visit http://www.formative.care/. If you are interested in participating in user testing or have feedback, please contact Mersina Simanksi at mersina@stanford.edu.

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