Using technology to help informal caregivers manage medication for patients with dementia

Most of the six million people in the U.S. who live with Alzheimer’s disease and related dementias rely on informal caregivers, usually family or friends, to help manage their medications. Researchers from Regenstrief Institute, Indiana University and University of Wisconsin have received a grant to create an application to support those caregivers.

“Caregivers are often under-trained, under-resourced, and under-supported to perform medication management. It can lead to significant burden, stress and even inappropriate medication use,” said Richard Holden, Ph.D., a co-leader of the project. “To this point, technology has not been leveraged to help this population. Using participatory user-centered design, we plan to create an application that makes this potentially complex undertaking a little easier for them and leads to better medication adherence and safety.” Dr. Holden is a research scientist at Regenstrief Institute and a professor and chair of health and wellness design at IU School of Public Health-Bloomington.

The app is called Helping the Helpers, and the project employs the three phases of participatory user-centered design. The team will start by interviewing and assessing the needs of the caregivers. Then those caregivers will work with the team to create the app with features and functionality that will benefit them. As co-designers, the caregivers will take part in all the design activities and will have equal say in the final product as members of the research team. The final phase will more widely test the app to see if caregivers can and will use it.

“This type of support is lacking for these caregivers, and technology provides an ideal way to reach them,” said Nicole Werner, Ph.D., co-leader of the project and an associate professor of industrial and systems engineering at the University of Wisconsin-Madison. “But an application is useless if these caregivers can’t or won’t use it. That’s why we are involving them in the design process from the very start, so we can create something that effectively addresses the struggles they and others like them are facing.”

“User-centered design is the industry gold standard process for designing products,” said Dr. Holden. “Any time technology is used, it must address end users’ needs. We are grateful for the National Institute on Aging’s support of this user-centered design approach.”