SCARBOROUGH – The world became dark and blurry as Ashley Mann slipped goggles over her eyes.
Headphones covered her ears, a constant stream of static, chatter and unexpected sounds drowning out the instructions of her caregiver.
Making her way slowly through a bedroom, she bumped into furniture and had trouble completing everyday tasks such as folding a shirt. It was hard to find the shirt in the first place. When someone touched her arm, she was startled because she never saw the person coming.
After five minutes, the certified nursing assistant was “super anxious.”
“I knew I’d be disoriented and confused, but I didn’t expect it to be like that,” Mann said. “It’s definitely an eye-opener.”
Mann, who works in the Holbrook Health Center at Piper Shores, spent five minutes Thursday experiencing what people with Alzheimer’s disease and dementia experience all day, every day. Piper Shores is one of the first nursing homes in the state to offer the virtual tour to help staff and residents better understand what patients with dementia are going through.
The “Virtual Dementia Tour” was created by Second Wind Dreams, a nonprofit organization focused on aging. The tour provides a window into the world of someone with dementia by simulating the psychological, emotional and physiological symptoms of dementia, such as vision impairment, peripheral neuropathy and memory loss.
The growing number of people living with Alzheimer’s disease and related dementia makes it imperative for caregivers and families to truly understand what patients are going through so they can provide compassionate and effective care, according to caregivers at Piper Shores.
There are more than 5.4 million people – including 37,000 in Maine — living with Alzheimer’s disease in the United States. That number is expected to rise to 16 million by 2050, according to the Alzheimer’s Association.
“We need to prepare for that,” said Peggy Farrington, interim executive director of Piper Shores. “The great thing about the Virtual Dementia Tour is it’s much more than textbook training. This really goes deeper and allows people who go through (the tour) to see what it might be like to have dementia. It’s very moving and eye-opening.”
The goal at Piper Shores is to have all employees – from nurses and administrators to cooks and maintenance workers – take the tour. So far, about half of the 200 employees have completed the tour, which includes a debriefing to talk about the experience and what could be changed to better care for residents with dementia. In February, Piper Shores will expand the program to include family members of residents and caregivers from other agencies.
Bill Kirkpatrick, program director for the Maine chapter of the Alzheimer’s Association, said the virtual tour can be a valuable tool when paired with education and discussions about the experience. It also helps raise awareness and reduce the stigma of Alzheimer’s disease, he said.
“It’s very dramatic. It does help to sensitize people to some of the limitations of living with Alzheimer’s disease,” he said.
Before the tour, each participant is outfitted with goggles that simulate macular degeneration, gloves that simulate neuropathy or arthritis, shoe inserts that make it uncomfortable to walk and headphones that play a recording of the sounds dementia patients describe hearing. Each person is sent into a bedroom to perform five tasks, such as locating an object or folding a specific piece of clothing. Trained facilitators observe participants’ behavior, which often is the same as people with dementia, Farrington said.
“You feel powerless, you feel hopeless. Some people sit down, some people wander, some make jokes. These are the things our residents do,” she said. “We tend to use terms like wandering, rummaging and hoarding. This teaches you there’s usually a reason for that behavior. That’s when it really hits home for people that behaviors are a product of the environment.”
Last week, one tour group included a sous chef, cook, two certified nursing assistants, a dietitian and a marketing consultant who works with Piper Shores. After the tour, they described the experience as stressful and scary.
“It was like I had (attention deficit disorder) but 10 times worse. I heard ‘bang, bang’ in my ears and it was really frightening. I was incompetent, that’s how I felt,” said Meghan Bridges, a CNA. “I was very distracted by my physical surroundings. It reminded me of a haunted house.”
Mann said participating in the tour will help her improve the quality of the care she provides her patients. She’ll be more aware of how she speaks to patients, avoid making loud noises in their rooms and make sure she doesn’t overwhelm them with a long list of tasks.
“I’ll definitely be more compassionate towards residents,” she said.
Staff Writer Gillian Graham can be contacted at 791-6315 or at: