The five tasks seemed pretty simple: Find and put on the white sweater; fold the towels on the bed; fill a glass halfway with water and drink it; set the table for two; and write a three-sentence letter to a loved one and put it in an envelope.
But finding the sweater in a dark closet with vision already muddied by macular degeneration is difficult. Folding towels with hands made stiff and clumsy by arthritis is surprisingly hard. Setting a table when it’s hard to see what’s in the cupboards and even harder to grasp utensils with stiff fingers is slow going. And writing a letter, folding it and slipping it into an envelope proves impossible.
All the while, the feet are in pain from corns and neuropathy; incessant, incoherent noise fills the ears; and the mind struggles to keep track of the tasks at hand.
As a caregiver with Yolo Hospice, where she serves as community liaison, Louise Joyce has seen firsthand what seniors suffering from dementia go through in their daily lives, but until she participated in a “virtual dementia tour” at Atria Covell Gardens last week, she hadn’t quite walked in their shoes.
The tour, offered for much of Friday to caregivers and family members of Alzheimer’s patients, used a variety of methods to simulate what life is like for seniors with dementia. Goggles intended to mimic the effects of macular degeneration had circles placed in the center of each yellowed lens to obscure vision.
Thick, nubby gloves with two fingers on each hand duct-taped together simulated the effects of arthritis, while inserts covered in sharp bumps placed in the shoes gave a sense of what corns and neuropathy feel like.
Finally, there were the earbuds, delivering never-ending loud, incoherent chatter to the ears.
“Oh, yuck,” Joyce exclaimed as she flexed her fingers in the gloves. “It’s very restrictive.”
But it was nothing compared to the pain from the inserts in her shoes as she put weight on them.
“I’m having ice cream after this,” she said.
Joyce was led to the door of a small apartment and told the five tasks she needed to complete.
She started in the kitchen and struggled from the start: seeing in dim light and through the goggles what was in the cupboards, grasping the utensils in the drawers despite the clumsy, taped-up gloves, all the while as the loud chatter blared in her ears.
“Oh my god, I don’t know how these seniors do this,” she exclaimed, reminding herself that for her, anyway, “it’s temporary.”
Table set, and water drunk, she struggled to remember what else was on her list of tasks.
“The white sweater … that would be in the bedroom,” she told herself, as she hobbled that way.
The bed was covered in a pile of laundry that Joyce had to sort through, searching for the white sweater despite her obscured vision and clumsy hands.
Not finding the sweater there, Joyce walked slowly over to the closet, peering into the dark, looking for something white, and finally finding and putting on the elusive sweater.
“Woo hoo!” she exclaimed with satisfaction. “OK, now there was something about the bed. I’ve got to look at my chart. I’ve forgotten.”
On the wall near the front door, her list of tasks had been posted, but nonsensically, with words of all different sizes and some words missing entirely.
Still, the list reminded Joyce of the letter she needed to write.
She struggled to get the cap off the pen, her thick, taped fingers getting in the way.
“Is this pen broken?” she asked no one in particular. “Oh my god it feels like it’s broken.”
It wasn’t, and she managed to write three sentences.
She returned to the chart and saw the letter needed to be inserted in an envelope.
“If this happens, it’s a miracle,” she said as she struggled to fold the letter and slide it into the envelope, before giving up. ”That’s not happening.”
“Do I need to fold a towel someplace?” she asked herself.
She makes her way back to the bedroom.
“Where is that towel? Is it on the bed?”
Alzheimer’s disease experts say the mumbling, talking aloud through tasks, is a common coping mechanism of those with dementia, and it’s something Joyce did throughout the exercise.
Just as Joyce was finishing the last of her tasks, Evelyn Mendez, executive director of Atria Covell Gardens, started her virtual dementia tour.
She, too, was talking aloud, loudly, compensating for the loud chatter coming through the earbuds.
“Am I yelling?” she asked no one in particular.
Mendez had a different list of tasks than Joyce did and struggled even more with them, unable to locate the belt she was tasked with finding.
“I can’t find the belt. I’m done. My feet are hurting,” she said. “The worst parts are the shoes and this damn sound. It’s not fun.”
Tour participants filled out pre-test and post-test forms, gauging how well they thought they understood what seniors go through.
It was very eye-opening, Mendez said.
“If you have arthritis … it makes it difficult to pick up a glass. I kept thinking, ‘If I’ve done it my whole life, why is it so difficult?’ ”
Pairing up the pile of socks on the bed was a challenge, as was seeing in the closet and distinguishing what she was looking at, she said.
“It’s an experience I would definitely encourage families to go through,” Mendez added. “It would make a difference in the way they look at things.”
As it did for her own role as executive director at Covell Gardens.
With the earbuds blasting incessant loud chatter into her ears, she said, “I felt like I was yelling and I was reminded of residents who talk (loudly). That was an eye-opener.”
Joyce noted that all of the garb — the gloves, the goggles, the earbuds — “removed my senses from me.”
It was very difficult, she said, “but a very enriching experience. This was an incredible exercise.”
For her it served as a reminder that what might seem to be problematic behavior — say, mumbling her way through the tasks — might serve a purpose.
“When you see a behavior you don’t understand,” Joyce said, “there is more to it.”
Cynthia Lilly agreed.
The national life guidance program director for Atria, Lilly noted that “the behavior makes sense” to seniors.
“We need to rethink what we see as a problem,” she added.
According to Lilly, someone in the United States is diagnosed with Alzheimer’s every 68 seconds. Once people reach the age of 85, their odds are 50-50 of developing the disease, she said.
“This is a family disease,” Lilly added. “Seventy percent of people are cared for at home.”
The virtual dementia exercise was intended to serve two purposes — to give caregivers a better idea of what their loved ones or patients are experiencing, as well as to provide tips on how to help them cope.
According to Second Wind Dreams of Georgia, which created the virtual dementia tour, the results of multiple tours have produced intriguing findings. Among them:
* The average person completed 2.5 of the five tasks assigned in the time allowed;
* While 13 percent of people felt very justified exhibiting inappropriate behavior before the tour, 53 percent felt justified afterward;
* 84 percent experienced an increase in vital signs during the tour; and
* 40 percent gave up and 25 percent made negative self statements.
The exercise did come at a good time for Covell Gardens, which just weeks ago opened its Life Guidance Neighborhood, an area for residents whose dementia has advanced to the point were they need to live in a secure environment.
The wing feels much like the rest of Covell Gardens and is now home to 24 residents who move freely in a family-like setting, complete with an open kitchen where residents can see their meals prepared; a large, yet cozy living room; outdoor walkways that circle back to the building; and more.
While residents have comfortable rooms of their own, “we don’t encourage them to spend a lot of time in their rooms,” Lilly said.
Covell Gardens plans to offer the virtual dementia tour again in January and anyone interested is welcome to sign up for it. Just call the main number, 530-756-0700 and have your name added to the list, Mendez said.
— Reach Anne Ternus-Bellamy at firstname.lastname@example.org or 530-747-8051. Follow her on Twitter at @ATernusBellamy