Helping the Helpers Through Virtual Reality Training
By Tracy Seipel
Santa Clara students, faculty on track to design and market VR training program for Alzheimer’s, dementia caregivers.
Emma Cepukenas ’23 remembers when her great-grandfather was diagnosed with Alzheimer’s, and the bewildering role that came with tending to a loved one suffering from memory loss.
“It was too much for them,” says Cepukenas of family members who stepped in to help. “I saw how hard it was, first-hand. They didn’t have any kind of professional training.” After two years of home care, she says, he was moved to an adult care facility.
The Santa Clara undergrad’s story echoes those of an estimated 15 million Americans, mostly unpaid family members, friends, and others, who are assisting those with dementia or Alzheimer’s. Yet few of these caregivers are ever counseled or trained to help them cope with the staggering responsibility that heads their way.
For these invisible second patients, as they are often called, life becomes an exhausting and emotional rollercoaster as they juggle their own duties and worries with the stresses of caregiving.
But a newly-launched partnership at Santa Clara called Maude’s Venture’s @ SCU is aiming to help by creating a virtual reality training program for caregivers.
Backed with a $125,000 grant from the Richard and Maude Ferry Foundation in Seattle, and overseen by their grandson Quentin Orem ’11, SCU students and faculty from public health, engineering, computer science, theater arts, marketing, and communication are preparing to tackle the project, which could be ready for market in 2024.
Healthcare innovation, from start to finish
“It’s a huge validation of what we hope to do with the BioInnovation and Design Lab, because we want to be involved in all stages of healthcare innovation,” says Prashanth Asuri, who directs the lab and is leading the effort along with colleague Julia Scott, a senior researcher in the lab whose studies emphasize brain health and brain aging.
“This is the first time we’re doing something start to finish, from ideation to prototyping, all the way through commercialization,” says Asuri, an associate professor of bioengineering.
The immersive dementia care training idea is just one of four technical approaches to dementia care pitched by an SCU student research team, many of them public health majors, during a day-long design sprint hosted by the Ferry Foundation in July. A panel of experts at the University of Washington Memory Care Hub met each team and then listened to their proposals. While intrigued by all four concepts, the panel gave the VR program the green light for its combination of impact, innovation, and feasibility.
Scott and Asuri say the yet-to-be-named product is inspired by a current virtual reality (VR) application that allows someone to experience the world through the eyes of people with dementia. The Lab’s approach will put the user in the shoes of a caregiver, rather than the patient. This kind of training can give caregivers skills and insights to help them manage the challenging aspects of care, such as de-escalating agitation, redirecting repetitive thoughts, and calming a person’s confusion, among other behavioral challenges.
“It can be so hard to navigate all of this on your own,” says Scott, who has cared for family relatives with dementia.
The VR training program team of Cepukenas, Kennedy Anderson ’24, and Leslie Cataño ’22 found that nearly all available dementia care training did not utilize VR, and that most learning methods were passive.
Passing the baton from one team to another
Scott describes the product as a virtual environment simulating typical care settings, in which challenging scenarios may be played out. Achieving this requires collaboration between subject matter experts in dementia care from Santa Clara’s public health sciences majors and script writers from the communication or theater arts departments.
Photorealistic situations will ask caregivers how they would deal with particular behaviors; for example, the best way to handle a person with dementia who is fixated on wanting to go to the store.
“In their head,” says Scott of individuals with memory loss, “they want to go outside and go to the store, but of course, they cannot do that by themselves anymore.” The VR training program, she explains, can show caregivers how to de-escalate that situation by taking them through a step-by-step process.
“They’re given a prompt about making a decision, and the consequences of that choice will be played out, and they’ll get to view that,” says Scott, adding that pop-ups will appear in the VR program asking caregivers what they should do next.
Scott and Asuri believe the VR idea and its software, that could be regularly updated, offers caregivers more realistic and valuable insights than reading training manuals or watching training videos.
Anderson, whose grandfather and godmother live with memory loss, has used VR before, and thinks the experience will translate well for caregivers.
“We know it’s being used in nursing schools and medical schools,” she says. “It could be a great thing for dementia care.”
‘Doing something meaningful’
For Cataño, who graduated this summer, being part of the VR training team has been “an opportunity to do something meaningful.” Along the way, it’s also taught her important skills she can use in a future career in health statistics, including honing her research abilities, writing succinctly on a complicated topic, and delivering a public presentation as she did in Seattle.
The design sprint was practically a 24-hour master class in itself, according to the students. Each team gave their initial pitch to a panel of nine stakeholders and experts in the field. After receiving feedback from the panel, the teams visited local retirement homes and a nursing school where they met with a gerontology nurse practitioner faculty member to gather more information.
Together with the tips from the stakeholders and the ideas they picked up during their on-site visits—for the VR team, that included ensuring that their digital VR stories represent people from different backgrounds and ethnicities—the teams returned to the UW Memory Hub where they re-worked their ideas and slide decks before making a second round of pitches that afternoon.
“It was a little nerve-wracking,” recalls Cataño of the 30 minutes each team was given to re-do their pitch. “It wasn’t something we had time to practice, but I think it went well, and it really taught me to be confident in myself.” It’s a feeling Asuri and Scott believe was shared by members of all four teams.
Beginning this fall through 2024, the VR project will move into the research and development phase where engineering and computer science majors and related faculty members will be recruited for their technical and design input. Asuri and Scott also hope to engage business majors when the time comes to manufacture and market the product. Every six months, the project team will report back to the Ferry Foundation board on established benchmarks.
Runner-up ideas explored
Asuri describes all four teams who participated in the Phase One ideation part of the project “four different champions of four great ideas.” The three runner-up ideas, he adds, will be refined and assessed by SCU faculty for potential development as senior engineering design capstone or independent study projects. The ideas and the presenting teams include:
1) McKenzie Himes ’23 and An Mai ’22: a “buddy system” app that connects novice Alzheimer’s caregivers with experienced counterparts via a chat system or video conferencing system, to walk them through difficult situations;
2) Maria Gonzales ’23, Kate Rickwa ’24, and Kiren Grewal ’23: an incontinence management mobile app that connects to an ultrasound bladder sensor on the patient that gauges when patients need to use the bathroom and notifies the caregiver.
3) Renceh Flojo ’23 and Luciana Lenth ’23: a mental health resources app that can monitor a caregiver’s stress levels and emotional state, and link them to a help line or therapist for online sessions.
Additional gifts through the Santa Clara University Memory and Brain Care Fund, says Asuri, can support student and faculty research and feed the product development pipeline for the runner-up ideas.