Door Marty Graham, Bijdrager

Carrie Shaw was 19 toen ze begon haar moeder te verzorgen, waarvan de langzame afname in de dementie van Alzheimer bijna een decennium duurde. Terwijl haar moeder het vermogen om te communiceren verloor, strijdde Shaw met vragen die gemeenschappelijk zijn voor gezinnen en professionele verzorgers. Was ze haar moeder aan het helpen? Wat meer of minder moet zij doen om haar moeder's angst, verwarring en pijn te verlichten?

Tien jaar later versnellen Shaw en het bedrijf, met haar mede-oprichter,  Embodied Labs , hun laatste reviews van het Alzheimer's Project, een virtual reality immersion programma dat zorgverleners een ervaring geeft van wat het in de greep van dementie is.

Shaw en twee collega's - korte film- en video-directeur Ryan Lebar, en programmeur en zelfbeschreven transhumanist Tom Leahy-oprichter Embodied Labs om virtuele werkervaring te creëren voor medische verzorgers, variërend van dokters van noodgevallen naar familieleden die voor een geliefde zorgen. Sinds de start van het bedrijf in 2016 hebben Shaw en haar team zich gefocust op het opleiden van deze providers door middel van een techniek genaamd empathie VR, die de gebruikers in de wereld onderdompelt, ervaren hun patiënten en kunnen vaak niet communiceren.

'Mijn moeder kon niet van de linkerhelft van haar ogen zien en zodra ik een bril had gebruikt om haar verpleeghulpjes te laten zien hoe dat was, begrepen ze meteen waarom ze moeite hadden met wat taken,' zei Shaw. 'Ze vonden manieren om te zorgen voor mijn moeder die zo veel beter voor me en mijn moeder werkte.'

Empathie creëren, stress verminderen

Door de ogen van patiënten te zien, creëert niet alleen empathie, zegt Shaw, maar vermindert ook de zorgverlenerspanning door inzicht te geven in wat voor hen gunstig is en wat niet.

Volgens de National Caregiver Alliance waren meer dan 40 miljoen Amerikanen  onbetaalde verzorgers  in 2015. Ongeveer een derde zorgde voor iemand met dementie, waarbij Alzheimer het meest voorkomende type is. En terwijl betaalde verzorgers, van gekwalificeerde verpleeghulpverleners naar thuisgezondheidstoestellen in de miljoenen, zijn ze veel minder dan hun onbetaalde collega's.

De last van verzorging, met name tussen gezinnen en vrienden, wordt vaak over het hoofd gezien of oversimplificeerd als eenvoudige liefde en familiebinding. In feite heeft de verzorging van alle soorten een goed gedocumenteerde impact op de zorgverlener, aldus Roberto Velasquez, de directeur van het Southern Caregiver Resource Center.

“When you’re constantly providing care, you become very isolated," Velasquez says. “Most caregivers suffer anxiety and depression if they don’t get the help and support they need."

Much of this anxiety comes from worrying that what is being done isn’t enough or isn’t helpful. “There can be a lot of guilt around caregiving, the constant worrying and stress that remains with the caregivers even in their off-hours. Am I doing this right? Am I doing enough?" Velasquez said. “The majority of caregivers are constant critics of their own work."

Programs like Embodied Labs’ are part of the emerging trend of using virtual reality to sample someone else’s experience and ease this stress. Although VR has been around since the early 1990s, it’s only in the last four or five years the equipment has become more affordable and less cumbersome.

“Now you can use a $500 display that you’re running off your cell phone," Skip Rizzo, a research professor with the University of Southern California’s Institute for Creative Technologies, explained. “VR is ready for primetime."

“When you’re constantly providing care, you become very isolated. Most caregivers suffer anxiety and depression if they don’t get the help and support they need."
— Roberto Velasquez, Southern Caregiver Resource Center

Seeing is Understanding

Dr. Mark Wiederhold, an internist who runs the Virtual Reality Medical Center in San Diego with his wife, Brenda Wiederhold, a Ph.D psychologist, still remembers the groundbreaking simulation that gave hospital staff, doctors and police a window into schizophrenia. With it, for the first time, emergency responders and caregivers could hear the voices that made it difficult to communicate with episodic schizophrenics in the field.

In more recent years, the Wiederholds’ clinic has won contracts with the military and the Veterans Administration to develop and use virtual reality for post-traumatic stress disorder among veterans returning from war. The vets often go home to their families before they have their first, often terrifying, experience of the disorder.

“Family members don’t understand the discomfort and terror of the very real physical symptoms," he says. “We use VR to let them have that experience, to help them develop an empathetic response."

In the Wiederholds’ clinic, once family members—who are primary caregivers—are exposed to their loved one’s pain, the care they provide becomes informed by a firsthand experience. In addition to providing more suitable care for their family, this helps alleviate feelings of helplessness for a provider.

“The [VR experience] lets [family] start to find ways to help," Wiederhold says. “Being able to, effectively, help reduces their stress."

Beyond individual families, the Wiederholds have spent the last three years working closely with a European government agency they declined to name, studying how to alleviate job burnout in teachers, physicians, and nurses—professional caregivers. The most effective approach they’ve found uses virtual reality to manage stress symptoms before they accumulate into a meltdown.

“Family members don’t understand the discomfort and terror of the very real physical symptoms. We use VR to let them have that experience, to help them develop an empathetic response."
— Dr. Mark Wiederhold, Virtual Reality Medical Center

Whether caregivers are struggling with their loved ones’ PTSD or dementia, they are often overwhelmed by what they don’t understand and not knowing if what they are doing to help actually helps. That’s one of the most important outcomes Shaw wants to see with Embodied Labs’ current project.

Shaw and her team are near the end of an Alzheimer’s Project test run at a residential-care facility in Chicago. Initial feedback from the staff there has been positive.

“There are a lot of layers of knowledge people can get from a seven-minute video," she says. “It gives people a visual vocabulary and a different place to start that conversation. We think this will really help caregivers with the unspoken burden of wondering if they were doing the right thing."

To gain insight into the patient experience so it would be accurately and vividly reproduced in the VR experience, Shaw and her team partnered with the University of Illinois’ College of Medicine. Together, Embodied Labs and the university researchers are working to advance geriatric research. Their first joint project, We Are Alfred, simulates the experience of a 74-year-old with hearing loss and fading vision due to macular degeneration. The company found that medical students were far more empathetic and far less likely to show bias against aging patients after they experienced the Alfred VR experience.

“Visual communication can break through language barriers, cultural barriers and educational barriers," Shaw said.

As a result of their collaboration, Alfred is now part of healthcare provider education at the medical school, and the medical school is also using it to help patients’ families.

The Alzheimer’s Project is slated to drop in late September or early October of this year. Caregivers at the Chicago facility report that they feel better about the treatment they provide, which reduces their stress and makes them more effective at their jobs.

“I really hope this Alzheimer’s tool can help people accelerate their understanding of what is going on. With my mom, I felt like I was constantly trying to adjust to these really strange things," Shaw says. “If we can help people understand their patients, they will feel better about the care they’re giving."