More than seven million Americans have Alzheimer’s Disease or some other form of dementia caused by damage to nerve cells in the brain. Symptoms include loss of memory, judgment, language and motor skills. Because people don’t recover from dementia, we don’t really know how it feels, but an assisted living company here in Virginia is offering virtual dementia tours, designed to give staff and family members a sense for what it might be like. Sandy Hausman took the tour and filed this report.
At Commonwealth Senior Living in Charlottesville, Jerry Lynn Daniels gives tour participants special glasses that simulate common disabilities as we age.
“The majority of our senior citizens have some form of visual deficit, whether it’s cataracts, macular degeneration, diabetic retinopathy. This is the macular degeneration,” she says.
Which means I can only see a small part of what I’m looking at. We put on two pairs of gloves and place inserts in our shoes to simulate problems with manual dexterity and strange sensations in the feet that come with neuropathy and arthritis.
Daniels then explains what to expect when we begin our tour.
“You’re going to be asked to perform five simple tasks. There’s also, in the room, a list of those tasks. Please stay in the room until your time is up, and I’ll come and get you.”
But when she puts earphones on each dementia tourist, it’s hard to hear anything else she says. The company that developed the program, Second Wind Dreams, wouldn’t allow me to record the actual sound, but it was something like this.
(mix of conversations and sounds)
Next, Daniels ushers me into a dark room with flashing lights. I can’t see any lists or do any of those tasks she mentioned, but I can see that someone is sitting nearby, making notes about what each tourist does. Daniels says many people react unconsciously.
“They are behaving exactly like my residents over the years. They’ll open every dresser drawer. They look through the closet. Then you may have that other person who is sitting on the couch. Well I see that with my residents, especially if there is something loud going on or a lot of activity. They kind of stay to themselves.”
I just stand there – afraid to move – until Daniels returns eight minutes later, guiding me to the debriefing room. There Commonwealth executive Bernie Cavis is talking with 82-year-old Averill Holtz of Lake Monticello. Her husband Paul lives in the memory care unit at Commonwealth.
“What word comes to your mind right now to describe how you feel?” she asks.
“When I finished,” Holtz confesses, “I felt like I’d flunked everything!”
People often finish the tour with questions about what they’ve been through and whether their family member is feeling those same things. Cavis is there with answers and explanations for how Commonwealth helps people with dementia to cope.
“We develop programs so that they feel purposeful. You know, ‘I’m not sure what I’m supposed to be doing, but maybe if I’m just standing here folding towels, it will make me feel a little bit better right this minute.’ We would hope so.”
And Cavis says staffers who take the tour are prompted to behave in new ways.
“Can we minimize noises or competing noises? Can we give directions more succinctly or more slowly or make sure they can hear us?”
To further calm residents, Commonwealth has created what it calls a serenity room. The company’s director of communications, Erika Gennari, shows me around.
“If you think about what you just went through upstairs and how painful and stressful and confusing all of that was, and then you’re in here where it’s soft lighting, and there are calming sounds, and soft pillows, and it’s very cozy and comfortable. When one of our residents is feeling agitated or stressed out, this is where we can take them. It sort of brings people back to a soothing, soft place so that they can go on with their day.”
In addition to caregivers, the Virtual Tour can be used to train police officers. Psychologist P.K. Beville developed the program. She says officers get plenty of calls from people with dementia who report someone watching or following them.
“The person is so confused that their own reflection in their windows makes them think they’re being watched or being followed. If the police department doesn’t know that, they’re going to call social services and have them admitted to a psychiatric unit. In fact, all they really needed to do was close the curtains, act like they’re checking the place out and then leave.”
She says the program can also help paramedics and anyone else who deals with the public. Take waiters and waitresses for example.
“If you have a cognitive impairment, how frustrating it is to go to a restaurant and look at this menu. You can still read the words, but you don’t understand really what it’s saying, so you order something, and it shows up, and you don’t remember that’s what you ordered, and you get upset.”
She says wait staff should be trained not to focus on the menu if a customer seems confused, but instead, to have a conversation.
“Asking them, ‘So what’s your favorite food?’ and they talk about their memories and their favorite food, and you bring them their favorite food. Well they’re not going to turn that down. “
At the University of Virginia’s Memory and Aging Care Clinic, Associate Professor Scott Sperling says he’s never heard of the Virtual Dementia Tour, but he agrees that it might promote a new way of thinking.
“Anything that would provide a greater window into what somebody’s day to day experience might be a step in the right direction.”
And given the nation’s demographics, he thinks all of us ought to be conscious of how the brain ages, and what that means for older people.
“We as a society are well behind the times to address the issues and the problems that are going to come with an aging population, particularly as the population as a whole is living a lot longer.”
Commonwealth says it plans to share the virtual dementia tour with staff and relatives at all 22 of its facilities in Virginia.