The meeting, led by Rich Holden of the School of Informatics and Computing and David Wilkerson of the School of Social work, focused on an online psychoeducation intervention he researched for parents that were struggling in their relationship with their adolescents.
Wilkerson’s talk on psychoeducation struck a chord with Bateman’s knowledge base on dementia and family caregivers.
After the talk, Holden introduced Bateman and Wilkerson and suggested they get to know Erin Brady, a human computer interaction expert who had recently done some groundbreaking work on social media and microvolunteerism.
In previous work, Brady had explored ways to help the blind with technology. Brady, through an app, paired blind users with sighted volunteers. Blind users photographed items or locations, then sent them to sighted members of the community for a description. Responses from the sighted users took less than a minute.
The three met and discussed a few ways their work might overlap, and ways they could team up to create something truly innovative. Eventually, the team landed on friendsourcing and microvolunteerism for caregivers of people with dementia. Friendsourcing, like crowdsourcing, is the act of asking members of a community for help in solving a problem. In the case of friendsourcing, that community is a person’s circle of friends on a given social media platform.
Once an idea was agreed upon, the three had to find a way to fund the project.
The team decided to pursue an innovations grant in the Regenstrief Institute’s Innovation Challenge, an event promoting advances in transforming healthcare.
To compete for funds, the team prepared a poster and showcased their vision to judges from the Regenstrief Institute’s research centers. Bateman, who was visiting his wife’s home country of Thailand, even showed up to help answer questions via Skype.
Soon after the event, the team discovered they’d been awarded the funds, and they quickly set their year-long project into motion.
“We all first met together in October, completed a grant proposal for a Regenstrief Innovation grant in December and were selected and funded by April,” Wilkerson recalls.
They recruited caregivers of patients with Alzheimer’s disease and created a Facebook group and app for the participants to share advice. As Wilkerson explains it, “[The app] joins Alzheimer’s caregivers’ peer support group members with each group members’ Facebook Friends social network. The group decides on informational and emotional support questions they want to push to their Facebook Friends social networks. When members of the Facebook friend’s social network micro-volunteer to answers their questions, they can be enlisted as members of the caregivers’ support networks.”
The project was a success. Caregivers received high-quality answers to questions on best practices for care, and the experience reduced their stress and transformed their perceptions of what it meant to be a caregiver. Most importantly, the study showed that participants were more likely to seek out more resources and support to help them provide good care for their loved ones.
“For me, this was a real-life example of the ‘whole is greater than the sum of its parts’” says Wilkerson. “Our perspectives on helping were quite varied based on our different disciplines. I believe the project allowed us to merge our perspectives and create an intervention that seems to be the first of its kind”.
EDITED 8/24: A previous version of this story incorrectly placed Dr. Wilkerson’s original talk on psychoeducation at the Brain Safety Lab. This story has been corrected to fix the mistake.
The views expressed in this content represent the perspective and opinions of the author and may or may not represent the position of Indiana University School of Medicine.
Phil Lofton is the Communications Manager for the Indiana University Center for Aging Research at the Regenstrief Institute. He focuses on sharing stories about healthcare innovation and research advancements, especially in geriatrics.