Building Empathy and Understanding through Shared Experiences

When Carrie Shaw was 19 an event “opened her eyes to what aging means in this country.” Her mother, who was in her late 40s at the time, was diagnosed with early-onset Alzheimer’s. During the disease’s early stages, Shaw says she was struck by the many ways (beyond losing memory) in which dementia impacts a person. She struggled with how difficult it was to properly care for her mom, and to ensure she lived a full, rich life despite her diagnosis.

Later the challenge became knowing what to do as the disease progressed, and communicating that knowledge to paid caregivers, who also were struggling to care for her mom. Shaw remembers being impatient and angry, despite knowing her mom’s diagnosis, and wishing it would be otherwise. She wanted a way to understand and better empathize with what her mom was going through. Her mom also had an unusual vision impairment, so Shaw created goggles to replicate that experience in order for her family and her mother’s caregivers to “see” what her mother could not. This small invention was a first trial in what became a much larger empathy training project, and eventually a thriving company.

Shaw had participated in an empathy training project and became determined not to duplicate it, because its disease information was inaccurate. As a trainee, it had left her wondering if pathology and loss are just a part of the aging experience and if general aging and dementia are related, both of which she knew to be untrue. Also, the training was stressful, emotionally draining and didn’t give her any of the actionable takeaways she needed as a caregiver. Shaw also felt such trainings lead to ageist beliefs and turned people off the field in general. She was driven to do better.

Landing on Virtual Reality as a Medium

While still caring for her mother, Shaw studied medical illustration in grad school. Her research thesis sought to answer the essential question of why humans have such difficulty empathizing with situations they have not themselves experienced. As she illustrated such situations for her thesis, and constructed 3-D models demonstrating surgical techniques and the structure of the brain, she ran into Tom Leahy, a grad student studying game design. He noted that her prototypes would work well in an immersive setting like virtual reality, and the seed for a company sprouted. The company is Embodied Labs, and Shaw is its CEO, while Leahy acts as Chief Technology Officer.

Embodied Labs creates virtual reality training programs (called labs) for the direct care workforce, family caregivers, management in senior living and continuing care facilities, medical and nursing schools, county governments, area agencies on aging, home care and hospice organizations, as well as companies that create products and provide services for older adults.

Each Embodied Labs experience is made as a film and interactive game, experienced as a 360-degree world through a virtual reality headset. First the Embodied Labs team interviews customers to identify training needs that would be most effective in a VR training program. Once settled on a concept that needs exploring, Shaw and her team interview subject matter experts on the various life experiences and health conditions, such as what it’s like to live with Alzheimer’s, or even how it feels to near the end of one’s life. From there, the team drafts scripts and storyboards, reviews them with the subject matter experts for accuracy, then moves the training program into production and post-production.

The first lab the company created embodied the experience of having macular degeneration and hearing loss, with subject matter expertise from the University of Illinois College of Medicine’s medical education team. This lab was designed to explore the relationship between dementia, delirium and depression through embodying the perspective of Alfred, a 74-year-old black man who also has macular degeneration and hearing loss.

Shaw explained that neuroscience research on the Theory of Embodied Cognition shows that when a person uses VR to experience such a situation the brain holds that information as if it were an actual lived experience. In the Alfred Lab, a person wearing the VR headset would experience visiting a physician while having vision and hearing loss. The trainee would feel not only the challenges of negotiating a doctor’s visit with poor vision and hearing, but during the appointment have to complete a cognitive test.

At the end of the visit the physician gives the trainee, as Alfred, hearing aids and says there’s no way yet to tell if you have cognitive impairment as first they need to get a handle on the other losses. The lab also explores relationships with Alfred’s family, where a trainee celebrates his 74th birthday in his home with your wife, children and grandchildren. Students also experience a daydream where Alfred is on top of a mountain, back in a time where he did not have vision impairment.

In the hospice care training students embody a veteran (Clay) who is married, has two children and receives a terminal diagnosis. During the experience participants make decisions on how they’d like to live out the rest of their lives, and they die as Clay.

For Embodied Labs’ latest creation, they interviewed LGBT+ elders for a lab on living as an LBGT+ older adult, using research from a nationally renowned expert in gender identity. Lab participants embody “Eden,” who was born “Edward” in the late 1940s. Learners experience key moments in Eden’s life, ending with her transition to living as a woman full-time as an older adult. Other simulations allow the learner to embody the experiences of other LGBT+ adults in Eden’s community. The training also covers brain science and the biology of sexual development to explain how people develop a gender identity.

“We are committed to developing immersive training for professional and family caregivers that’s based on the authentic experiences of individuals who have been marginalized,” said Shaw. “By telling their stories and enabling staff and caregivers to see through their eyes, lab participants can gain a deeper understanding of how to provide empathetic and high-quality care.”

Impact of Immersive Learning Sets a New Standard for Advanced Learning

Embodied Labs is now four years old. The team has honed the research and creation process down to three months, including interviewing subject matter experts, building the interactive story boards, producing a live action film, through post-production clean up.

Each lab has multiple training components: a pre-test to ascertain knowledge level going into the exercise, prep for the module with class instruction, embodying an older adult with themes of five to seven minutes each; a reflection period with the trainer; followed by a post-test. The data measures five metrics: knowledge, behavior change, emotional intelligence (empathy), cultural competency, and competence (job satisfaction and how connected they feel to the people they embodied).

Embodied Labs’ has 48 academic subscribers. Many of these academic programs, including California State University Channel Islands School of Nursing, University of New England School of Osteopathic Medicine, and University of California Irvine School of Medicine have demonstrated peer-reviewed impact of the Embodied Labs training through independent research (with no influence from Embodied Labs). The company has more than 100 aging services organizations that subscribe to the platform, ranging from senior living communities to home care to hospice to municipal governments Area Agencies on Aging.

Direct care workers have been so engaged in the material that Shaw was happy to hear several mention that staff members have lined up to participate in the VR training sessions, which is not something generally seen with most compliance classes. Staff also have noted that they are proud to have been asked to participate in such training, as there’s a great thirst for more ways to empathize with older adult patients and congregate living residents.