STEVENSVILLE — There’s no real way to know what goes on in another person’s mind, and that’s exponentially true for people with dementia. As their health declines, they lose what allows them to communicate their own experiences.
But now, there’s a nonprofit that’s created an exercise – the Virtual Dementia Tour (VDT) – that it believes provides a window into the dementia experience. It hopes it can improve the lives of patients suffering from brain disorders.
Second Wind Dreams created the VDT, and Pine Ridge Rehabilitation and Nursing Center in Stevensville has already put 150 staffers through it.
When I arrived at Pine Ridge one sunny afternoon, I wasn’t sure what to expect. I thought the VDT might be a computer simulation, or something like the goggles they put on teens to simulate drunk driving.
But what Second Wind Dreams and Pine Ridge are trying to simulate is the day-to-day life of many of the nursing home’s residents. So after I was outfitted with headphones, thick gloves and goggles, they led me into a room, and just let me wander around.
There were instructions I was supposed to follow to complete various tasks – set the table, fold some laundry, put some batteries in a flashlight. Of course, nothing about dementia is easy.
That’s the goal of P.K. Beville, the geriatric psychologist, dementia expert and creator of the VDT: to make tour participants understand, not just in a "of course losing your memory can’t be easy" sort of way, but in a visceral way, that dementia can be unbearable.
The tour is attempting to take participants from sympathy to empathy, even though the participants are only living dementia – or rather, an approximation of it – for just eight minutes.
It’s a surprisingly long eight minutes.
My tour begins
My tour started with Ronda Holmes, Pine Ridge’s activity leader and the facilitator for the tour, leading me into a dim room and, I assume, explaining what I was supposed to be doing for the next eight minutes.
I say “I assume,” because I couldn’t hear her over the din in my headphones – a mix of conversation that was too quiet to hear properly but too loud to ignore. It was incredibly distracting. It’s meant to simulate the way the brain works in a person with dementia: they become unable to filter out the background noise that is constantly going on around us, but we hardly ever notice.
Then Holmes left me to it. I wandered around a bit. My goggles made it difficult to see.
Dementia isn’t a single condition, but an overall term for diseases and conditions related to the decline of memory, language and other thinking skills. A host of other illnesses can come with those conditions, including vision problems like macular degeneration and tunnel vision.
My goggles had spots in front of my eyes and eliminated my peripheral vision. I could only see somewhat clearly when I looked straight down.
I found the sheet of instructions, but they were garbled – “Table 4 four,” “Clok 10 + 4,” “Flash BATery light,” “Change the purse.”
It was confusing, but made just enough sense that I felt like I ought to be able to figure it out. So I wandered around the room some more.
I found a flashlight and some batteries – not the right size, but, oh well – and tried to put them in. The thick gloves, with the thumb and first two fingers stitched together, simulated not only the loss of dexterity many dementia patients face due to conditions like arthritis, but also the loss of sensation in their fingertips.
I couldn’t tell what I was doing and broke the flashlight. I left it on the table. The voices were talking more loudly in my ears – punctuated every once in a while by a slamming door – and I knew I needed to get moving.
There were dishes and silverware on a counter, so I decided “Table 4 four” meant I ought to set the table. But there was a mess of laundry on it, so I hauled all of that to the living room.
By this point, my foot was hurting – along with the goggles and all the rest of it, I was given an insert to put in my shoe that was covered with sharp plastic spines. It was meant to simulate the pain people with dementia often experience – pain that can go untreated simply because patients aren’t able to communicate that something hurts.
But I had moved the laundry and was setting the table, finally doing a task I could reasonably believe I was supposed to be doing, when an alarm began blaring in my ears.
I cringed (and probably swore) and looked wildly around at Holmes, who was monitoring my VDT. She didn’t react, and that’s when I realized the sound was just in my headphones. I finished up the rest of the eight minutes, but it took awhile for my heartbeat to settle back down.
Holmes said that feeling of anxiety after going through VDT was not unique – it’s part of what the VDT is meant to show about what people with dementia go through everyday.
Pine Ridge put their staff members through the VDT in an effort to encourage an empathetic connection with their patients. But the idea behind the VDT isn’t just that it’s beneficial for staff, but that an improved connection could have lasting implications for patient care.
There’s reason to believe that the lack of understanding between a caregiver and a person with dementia could affect the quality of their treatment.
A 2009 study in the Journals of Gerontology on nursing homes in Florida found that 71 percent of Medicaid residents newly admitted to a nursing home were prescribed antipsychotic medication, even though they hadn’t been prescribed those drugs prior to admission and were exhibiting no psychotic behaviors.
That indicates that patients may be being prescribed medication they don’t need, possibly because their caregivers don’t have a good enough understanding of the symptoms and behaviors associated with dementia.
Pine Ridge’s goal is to educate staff and families about the “new normal,” Holmes said. People with dementia often exhibit behaviors such as acting agitated, or rummaging and hoarding. Family members and staff often “want to redirect and stop the behavior, because it’s ‘not normal.’”
“But agitation is normal for dementia,” Holmes said.
She points to the example of the alarm that made me jump. When a fully functioning brain hears a new sound, it pairs that sound with the memory of an old sound, Holmes said. Once the brain can categorize a sound as something it knows, it can ignore it. All this is happening so quickly we don’t even notice it.
“Dementia patients don’t have that,” she said.
So sounds that staff or family members know are harmless can cause intense agitation in a person with dementia. Constant startling noises are only one of the factors that can add to patients’ anxiety.
Holmes said instead of trying to stop people with dementia from exhibiting these behaviors, staffers need to recognize the behaviors are the natural byproduct of dementia, and can be coping mechanisms that make the person with dementia feel better.
“Encourage them, but keep them safe,” Holmes said.
The VDT helps staff learn techniques to keep their patients calm “and to give everyone more empathy,” she said.
“We have to approach [patients with dementia] from in front and down low to get that little bitty window of sight,” Holmes said.
Pine Ridge keeps baskets of items on tables in every day room so residents can pick through them and hang on to whatever they like.
“The shift is on caregivers and family to adjust, not on patients to go back to the way they were,” Holmes said.
The VDT also gives staff insight into why a dementia patient’s behavior may worsen as the day goes on, a behavior called “sun-downing.” It’s because the patient isn’t only dealing with dementia, but multiple other diagnoses, and it becomes exhausting.
“All of that is working against them all day long,” Holmes said. “All day long their brain is working, working, working.
“Reading about an experience or watching a video – it can give you an idea,” she said. “But you don’t have the point of reference [in your own experience].” After taking the VDT, “you now know why they get worse in the afternoon.”
'It just woke my eyes up'
For three years, Don Marsh, a driver for CareRide, cared for his wife, who had Alzheimer’s, before she passed away. He went through the VDT offered by Pine Ridge.
“It just woke my eyes up,” Marsh said, his voice catching a little as tears welled in his eyes. “I felt guilty when I left [the tour], because you say things sometimes.”
Marsh remembers his wife asking everyone to repeat themselves and then, when she couldn’t understand, just sitting down and refusing to participate in the conversation. Marsh said he became so overwhelmed by the VDT, “by the end, I went to sit down.”
“I know I care for people and I want to do it right and well,” said Yvonne Wood, a Pine Ridge activity aid. But the VDT was an eye-opener for her as well.
Her mother is in the early stages of dementia and has begun repeatedly canceling appointments. After taking the VDT, Wood could see how hard leaving the house must look to her mom.
“I just felt the anxiety,” Wood said, fighting back tears.
Holmes said now that Pine Ridge’s staff has gone through the tour, the next step is to have family members go through it, too.
At Pine Ridge, sometimes residents who are in the nursing home for physical ailments are paired in rooms with residents with cognitive ailments. Recently a physical resident asked to go through the tour to better understand her roommate, who suffers from dementia.
“That would kind of be the next wave," Holmes said, "to help residents understand their neighbors."