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Experiencing dementia the virtual way

Empathy - the kind where you try to think your way into understanding how others feel - only gets you so far.

Richard Abraham, whose mother lives at the Watermark, attempts routine household chores with thick gloves, blinding glasses, and disorienting noise.
Richard Abraham, whose mother lives at the Watermark, attempts routine household chores with thick gloves, blinding glasses, and disorienting noise.Read moreCHANDA JONES /Staff Photographer

Empathy - the kind where you try to think your way into understanding how others feel - only gets you so far.

The leaders of the Watermark at Logan Square, a senior-living high-rise in Philadelphia, recently helped the children of two residents take their empathy to a new level.

After just a few minutes of being "garbed" with some low-tech handicapping devices, Richard Abraham, 59, a stock trader who lives in Havertown, and Becky Jones, 53, a Widener University political science professor who lives near the Art Museum, developed a new appreciation for what it's like to be old and have dementia.

Both emerged from their "virtual dementia tour" with a better idea of why their mothers need patience and frequent reassurance.

This was the point, of course. Watermark recently began offering the program to its department heads and family members of residents with dementia. Other employees will follow.

Some of the managers found the experience so overwhelming that they gave up. Those who completed the tour were so upset that they wanted more time to talk about it than organizers had allowed. "They were amazed how depressed it made them feel, and helpless and angry," said Kathy Baksi, a social worker in Watermark's skilled nursing facility.

Family members who don't understand dementia can easily become impatient and frustrated, said Amy Snyder, nursing home administrator at Watermark. She thinks educating them may make them more patient with their parents as well as staff.

P.K. Neville, a psychologist who created the virtual dementia tour for a Marietta, Ga., company called Second Wind Dreams, said her goal was to find a way to let people experience what it's like to be confused and frustrated, so they would have more empathy for people with Alzheimer's. The disease affects memory and thinking ability. After they've taken the tour, she urges people to think about what would have helped them.

Neville said that more than a million people have experienced the tour since 2002. Her company began marketing an at-home version aimed at families in May.

Beverly Patnaik, an aging expert in Tennessee, developed a similar approach in the 1990s to help students and staff members appreciate the physical challenges - poor vision and breathing, foot pain, serious arthritis - associated with aging.

"Recently," she said, "more and more facilities have asked me to come in and do it for family members to help them understand some things that are going on with their loved ones."

Audrey Wilkins, staff development coordinator for Wesley Enhanced Living, which offers a range of senior housing options in Philadelphia, has just begun offering family members of its residents a chance to attend daylong educational sessions on dementia that include the virtual tour.

It helps people understand why it's important to get residents' attention before talking and allow adequate time for them to follow instructions. "Sometimes we have to slow down when we communicate," Wilkins said. "Sometimes we have to repeat ourselves."

She thinks the virtual dementia tour could strengthen relationships between family members and residents, as well as improve the quality of visits. "A lot of times family members do not really have a good understanding of what Alzheimer's disease is," she said.

Abraham and Jones arrived for their tour in good spirits on a frigid afternoon. The stock trader and the professor began by putting insoles covered with sharp little ridges in their shoes. They created aggravating pinprick sensations with each step.

"Why do I feel like Bozo?" Jones joked. "This is like when my undergraduates do the drunk-driving thing."

Next came glasses meant to simulate macular degeneration. Vision was fuzzy on the edges with a black circle in the center. They put on loose-fitting knit gloves. The final step was to don big headphones blaring noise that sounded like a radio station that hadn't been tuned in quite right. Every now and then alarms and sirens would sound.

Jones went first. She was told she would be asked to do five things in 10 minutes and there would be no repeating the instructions. She was taken to an empty, furnished apartment.

In a quiet monotone, Vanda Johnson, Watermark administrator, told Jones to find a white sweater and put it on, write three sentences in a note to her family and put it in an envelop, set the table for four, fold all the towels, and fill a cup half full of water and drink it.

Jones laughed uproariously. It was the laugh of someone who knew she was doomed.

She found a cup and filled it, but did not drink.

"This is messed up," she said to herself as she wandered through the rooms.

She pointed at the table, went to the kitchen and found silverware. She never bothered with plates.

Moving tentatively, she found towels and other laundry piled on the bed. She picked up a towel, but didn't fold it.

She wrote something and put it in an envelope.

She found a white sweater and put it on. That was all she could remember.

Abraham had come in by then. He had a different set of tasks. He collected all the silverware, but left the napkins on the table. Then he found a pair of pants and a belt. Very slowly, he guided the belt through the belt loops. He tried to put a tie on and actually managed to make a knot, a remarkable feat with the gloves. Most of the employees hadn't attempted it. By the time he finished tying, his time was up.

Each completed two of their five tasks. Employees averaged 1.6.

Jones found the vision loss most disturbing. "I couldn't see the silverware," she said. "I couldn't see what I was writing."

She was struck by how hard it was to have so many problems simultaneously.

The insoles made Abraham feel unsteady. "The whole experience is you lose confidence," he said.

Both realized they should work harder to make their mothers feel safe.

Bobbi Cassidy, director of nursing, was so flustered that she broke into a sweat when she did the virtual tour, but said she was able to think logically about what she needed to do. Her mother died of early-onset Alzheimer's, and Cassidy knows a lot about the disease.

"When I had all that stuff on, I still didn't have dementia," she said. "It does give you some insight into what their challenges could be, and they're only going to get worse."

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@StaceyABurling