Recent Study Finds People with Dementia Use Changing Information Behaviors when Seeking Health Information

Olivia Borgula - September 19, 2023

INFO Assistant Professor Amanda Lazar and a team of researchers studied how people with dementia search for health information after diagnosis


In a study published last year, College of Information Studies (INFO) assistant professor and member of the Human-Computer Interaction Lab (HCIL) Amanda Lazar, along with a team of researchers, explored how people with dementia search for health information.

Lazar was interested in studying how people with dementia use self management to find information about their condition, something often overlooked when researchers passively study people with dementia. That interest, bolstered by support from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) is what made the study possible. 

Researchers conducted interviews with people living with mild to moderate dementia about their information behaviors followed by a demonstration of how participants seek information. They found that individuals with dementia actively search for information on their condition and adapt their information behaviors when needed.

“We might try and get the caregivers’ information, but we’re rarely thinking that people with dementia themselves are actively taking care of themselves, self advocating, looking for information,” Lazar said.

Two members of the research team had dementia, which allowed the team to connect with more individuals with dementia as opposed to only searching for participants through flyers or the internet. It also provided insight into the ways people with the condition are stigmatized. 

For example, the team had a conversation about participant ID after one of the authors explained that assigning participants numbers can be dehumanizing for people with dementia even though it’s standard research practice.

“We didn’t think about how the dehumanization of people with dementia is happening,” Lazar said. “We want to be really careful in the way we write to not use really stigmatizing language.”

More on the HCIL

Lazar’s research understanding health information accessibility goes alongside her work with the HCIL, which she has been a member of since joining the University of Maryland (UMD) in 2017.

One valuable component of the HCIL has been the paper clinics, Lazar said, referring to the annual event where faculty reviews each other’s papers to prepare for publication. Getting both constructive feedback and supportive comments on her work has been beneficial for her and her students. 

The HCIL has also aided Lazar in connecting her students with other professionals. One of her students presented a poster at an HCIL symposium around two years ago and a group called My Tech Clinic saw her presentation and developed a relationship. The group has since presented at  Lazar’s classes and has shown interest in collaborating on future projects. 

“We don’t want to feel alone in our research,” Lazar said. “Knowing that there’s this crowd of people around you that are interested in the same thing, and are cheering you along, people that you see at conferences, commiserate over deadlines together understand the unique aspects of this community. That’s pretty cool.”