What it's Really Like to Live with Dementia: Virtual Tour a Revelation

Aug 21, 2015

DEER ISLE, Maine - Millions of Americans live with dementia’s confusing and distorted reality. Yet, it’s still hard for loved ones and caregivers to understand dementia’s effect on daily life. in Maine, one nursing home is offering them a way to experience dementia themselves.

In a 20-minute simulation, loved ones and health professionals undergo a virtual dementia tour.
 
Wearing a pair of vision-restricting sunglasses, you layer two pairs of gloves on your hands and place spiked pads in your shoes. You wrap noise cancelling headphones over your ears, and the audio track in the background makes everything a garbled mess of sound.

The woman holding your hand recites five basic tasks for you to complete. But you can’t make out her words. She leads you into a typical patient room, but it’s dark and strobe lights are pulsing in every corner. You feel the door close behind you and your heartbeat quickens. You know you’re supposed to do something but aren’t sure what. So you just wander.

This is what it’s like to undergo Island Nursing Home and Care Center’s virtual dementia tour.

"This is the most complicated sweater I’ve ever been in."  That’s me trying to wear a towel during the tour. That’s how confusing everything is when simulating - and living with - dementia.

"The greatest form of respect we can give is to walk in someone else's shoes," says Becky Siebert, residential care director at the nursing home where all employees, regardless of job title, are required to participate in the simulation.

Siebert says the tour is a training in empathy, which she believes is the only way to treat patients. "The best way to care for someone with dementia is to know that person, know their history, know what they loved in life, their family, what they may have been scared of."

Island Nursing Home and Care Center in Deer Isle began offering the simulation two years ago as a way to raise awareness in the community for an anticipated influx of elders with dementia. "Five-point-three million Americans have Alzheimer's disease today," Siebert says. "And by 2050 the number is to range upward to 16 million people. And that’s just Alzheimer's disease."
 
The tour is orchestrated by Second Wind Dreams, a non-profit corporation in Georgia. Over the course of 13 years, researchers compiled the symptoms, behaviors, and complaints of dementia patients and created "garb" to recreate the disease for loved ones. "When you or I get garbed up and we go into this tour, very soon we start exhibiting behaviors, the same behaviors as someone with dementia or similar," Siebert says.

This method of learning may not be the most gentle, if reactions of some of the participants are any indication. "My anxiety level just spiked the minute I actually began the tour," says one, named Judy.

"It was very scary, very disorientating," says another, named Matt.

But if empathy is the goal, it serves its purpose. "It horrifies me to think that people go through that and live with that. It horrifies me," says a participant named Muggsy.

"This did bring me to tears. No question about it," says participant Laura Lyell. Lyell says the experience hit her close to home. "As a daughter, I’m sure I’ll be more empathetic towards my mother. At least, I’d like to think that I will be."
 
According to Second Wind Dreams, the virtual tour has been experienced by a million people in 17 countries, and is used in 200 colleges and universities as adjunct curriculum.