(Photo courtesy of Carrier Clinic)
I felt befuddled. Disoriented. Frightened. And ready to scream in frustration.
Fortunately, it was only for eight minutes. But that was more than long enough to give me a sense of what it might be like to have Alzheimer's disease.
My brief descent into the world of dementia was by invitation, and harrowing though it was, I'm glad I accepted.
The invite came from the Carrier Clinic, one of the largest behavioral healthcare centers in New Jersey. Among the people who the clinic serves are adults over 60 with Alzheimer's disease or other forms of dementia.
In 2017, the clinic began offering employees a program called the Virtual Dementia Tour, which is designed to let them experience first-hand the kinds of physical and mental challenges that people with dementia face.
"It's compassion training, it's a sensitivity training," says occupational therapist Nicole Kiseli. "It allows people the opportunity to walk in the shoes of someone with dementia, and get a sense of what the patient's life is like."
There are more than 5.7 million Americans with Alzheimer's, and caring for people with this dreadful disease can be daunting for experienced health professionals, let alone family members trying to take care of a loved one at home. When care-givers actually experience what Alzheimer's might feel like, it gives them a whole new frame of reference, says Molly Fogel, director of educational and social services for the Alzheimer's Foundation of America.
"It's a start to the conversation," Fogel says. "They say, 'Oh my goodness, I had no idea this is what mom is experiencing every day. This is scary.'"
The Virtual Dementia Tour that I went through has been around for more than a decade, and its creator, Second Wind Dreams, says more than a half a million people have been through it. And the opportunity to experience a simulated form of dementia will become even more accessible in the near future, as the Alzheimer's Foundation of America prepares to launch a virtual reality version. That effort was on the national stage in March when it was presented in a workshop at the annual conference of the National Association of Aging in San Francisco.
Fogel says people who don the virtual reality headset get to "briefly experience what it's like to step into the shoes" of someone with Alzheimer's.
"Especially someone who is not connected to illness may stay, 'I'm so glad I can take this (headset) off,'" she says. "But individuals with this illness can't take it off, so how do we help build empathy and understanding?"
I can attest that the experience of an Alzheimer's simulation can be intense -- overwhelming, actually.
And truthfully, I thought I'd be better prepared for it than I was. Three years ago, I lost my mother to one of the less common forms of dementia -- known as frontotemporal degeneration. So I know what dementia is. I've seen what it does to a person.
But dealing with it isn't the same thing as experiencing it. That's what I learned in the most jarring way possible when I reported to the Carrier Clinic, located in Belle Mead, for my virtual dementia experience.
I met several employees there, including Nyree Sampson, the new director of the clinic's Older Adult Unit, who was going through simulation with me. After brief introductions, things quickly got serious. The staff fitted us with special glasses, headphones and gloves that mimicked some of the cognitive and sensory impairments that people with dementia experience.
Right before I enter the simulation room, Nicole Kiseli gives me a set of tasks to perform -- more than I can possibly remember.
As they led us down the hall to the simulation room, my anxiety level already was rising. At the door, I was quickly given a set of tasks -- more than I could possibly remember, and then suddenly we were in the simulation room.
The next eight minutes were like a surreal nightmare. Loud, startling noises. Flashing lights. An unfamiliar setting. I couldn't get my bearings. I muttered. I groped around. There was something I was supposed to be doing, but I struggled to remember what.
Finally, my mind grabbed onto the notion that I was supposed to find a pair of pants and a belt, and put the belt through the belt loops. I found the pants, but I never found the belt, and didn't even manage to complete that one simple task. It was frustrating, humiliating. (I learned later that there was no belt, simulating a common experience where a person with dementia futilely looks for their wallet or their purse, but never finds it because they don't have one.)
By the time the eight minutes was up, I desperately wanted out. They took us back to a meeting room, where we shed our gear. Suddenly, I was a capable, cognitively normal person again.
But a changed person. Those eight minutes reshaped my understanding of Alzheimer's. I could see that Sampson was as shaken as I was.
I search for a pair of pants in the simulation room while Nyree Sampson, director of the Older Adult Unit, attempts to perform another task behind me.
"After it's done, coming out of that anxiety you just went through, it take you a minute," she said. "The way your heart is pounding . . . afterward, you have to take that time to process down from it."
She then said aloud what I was wondering. What must it be like for a patient with Alzheimer's to experience all of that, and have no escape from it? "If I was off on my own, sitting in my room," she said, "I'm trying to imagine how hard it would be to calm down."
"You can see how that could lead to depression," Kiseli told her.
Kiseli and Kristin Carr, lead group counselor in the Older Adult Unit, dissected the experience for us, describing the behaviors they observed in us as we struggled with our anxiety and confusion.
"You were mumbling to yourself; you did a lot of wandering," Carr told Sampson. "You had a lot of repetitive behaviors. But one thing you were more successful at was setting the table. You've done that so many times."
They explained how the training allows staff members to be more understanding of the behaviors that Alzheimer's patients exhibit, and more effective in dealing with them. For instance, during the short time we were in the room, Sampson and I began to shadow each other without realizing it.
"Shadowing is a good sign," Kiseli explained. "It means that the patient feels comfortable with you, they trust you. They kind of cling to a staff member, or follow another patient around. It's a pretty normal response. It's a way to cope with confusion."
I told them what unnerved me most was being bombarded by loud noises. Carr said a noisy environment can be particularly difficult for people with dementia, and the staff does what it can to avoid startling sounds or loud ambient noise.
"If someone drops a table tray or slams a door, or people are shouting, it's too much stimulus," she said. "It's very frustrating and it's all day long for them, not eight minutes."
Carr said the staff has been appreciative of the training, and it's helped reinforce the empathy and patience that's important in working with Alzheimer's patients.
"A caring touch, kind words, telling them, 'You're going to be OK,' those acts of compassion are so important," she said. "People with dementia have less cognitive decline in a setting with positive reinforcement."
Shortly after the training, as I further researched the topic, I learned of the virtual reality workshop that the Alzheimer's Foundation of America offered in San Francisco. To me, that showed the elevated role these simulations are taking in the effort to educate families and communities about Alzheimer's. So I contacted Fogel to talk about it.
It turns out Fogel had been through the same Virtual Dementia Tour I took, and still remembers the impact it had on her personally.
"It was eye-opening for sure," she said. "When I did the Virtual Dementia Tour, I felt a lot of anxiety. I was very nervous. I didn't know what to do."
The foundation has worked with the Virtual Dementia Tour, and now is collaborating with Greener Media to develop a virtual reality version that's more portable and can be experienced by people in a greater variety of settings.
The virtual reality version mimics what the moderate stage of Alzheimer's can be like. Of course, nothing can truly replicate the experience of dementia for someone who doesn't have it, but the goal is to give people a glimpse of that reality.
"We're very clear that this is what it may be like, or could be like," Fogel said. "Each individual who has Alzheimer's lives with it differently. We talk about the cognitive symptoms of Alzheimer's and the physiological symptoms. We're just trying to give that snapshot. We're trying to help the person who's living with that person have a better understanding."
What the foundation showcased at the National Commission on Aging event is a demo version of the virtual reality experience. It expects to have the full version ready in a few months, and Fogel looks forward to reaching as many people as possible with it.
She said anyone can benefit from spending a few minutes walking in the shoes of someone with Alzheimer's, and that's true not just of health professionals and family members, but also of community members who come in daily contact with the growing population of dementia patients, such as grocery store clerks or bus drivers or servers in restaurants.
"This is empathy-building and we could all use this understanding," Fogel said. "Everyone should go through this experience."