Walking in the shoes of ailing loved ones helps caregivers understand them.
by Mickey Goodman
While wearing bulky headphones, smoky glasses with nickel-sized dots in the center, prickly shoe pads and oversized cotton gloves, Leslie Fowler of Atlanta is ready to begin the Virtual Dementia Tour (VDT), a program that lets caregivers of people with dementia feel what it is like to walk in their loved ones’ shoes.
In her left ear Fowler hears voices and laughter, but she doesn’t get the joke. In her right, it sounds like a rock concert. “I can’t sort out the noises from the five tasks the facilitator is giving me,” says Fowler, 64, a property manager. A siren screams. A bell rings. Doors slam. She can scarcely see and her feet hurt with each step she takes. The “tour” hasn’t yet begun, and she’s ready to bail.
Unlike Fowler, who can walk away, the 5.4 million Americans who have dementia don’t have options. “They live it 24/7,” says P.K. Beville, who developed the VDT program and founded Second Wind Dreams, a Marietta, Georgia, group that grants wishes to seniors on a model similar to the Make-a-Wish Foundation.
Dementia is caused by the death of brain cells, leading to a deterioration in mental function. It can occur for many reasons, including circulation problems and some genetic disorders. The most common cause is Alzheimer’s disease, the sixth leading cause of death in the US, which is marked by abnormal protein deposits in the brain. In general, symptoms begin with memory loss and may progress to difficulties with communication, hygiene and decision-making; sometimes patients lash out at those who love them.
Living the Dementia Reality
More than 200,000 people in 14 countries have put on the headphones, smoky glasses and other accessories “to see, feel, hear and live life with dementia,” says Beville. But the costume is only the prelude.
The tour begins when participants enter a dimly lit room to complete a set of tasks. “My tasks were to fill a cup half-full, fold towels, find a sweater, put it on and set the table,” says Fowler, whose mother has dementia. “But once I was in the room, I couldn’t remember a thing.”
Fowler is not alone. Janice Keclik, a community liaison representative with Atlanta-based Gentiva VistaCare Hospice and certified VDT facilitator, says the average participant completes only 2.2 of five tasks.
Ideally, the tour should take 10 minutes. “Six is not long enough, and more than 10 can be traumatic,” Keclik says. If such a short time with simulated dementia is disturbing to caregivers, she adds, imagine living with it all the time.
Maggie Anderson and her husband, Charlie Sheeran, of Lynn, Massachusetts, who together care for her 89-year-old mother, participated in the VDT at Aviva Centers for Living, a Peabody, Massachusetts, rehabilitation and adult day care center. “VDT should be mandatory for professionals in the medical field and offered to all caregivers,” says Anderson. “The experience helped me accept a new reality—not mine, but hers.” She also let go of expectations. “In our house, utensils are optional at dinner, and we often sing or dance our way to bed or the bathroom—things Mom loves to do. We also try to find humor whenever possible.”
“Raw and Real”
Carol Steinberg, executive vice president of The Alzheimer’s Foundation of America (www.alzfdn.org), which has a strategic partnership with the VDT and Second Wind Dreams, says she “emerged shaken” after going through the tour at a conference.
“It’s very raw and real, and the way it’s presented gives caregivers an eye-opening experience so they can better understand their patients,” Steinberg says. “The VDT clearly demonstrates to those who don’t have the disease the confusion, loss of senses and judgment, and inability to make decisions and how crippling it can be.”
Carole Larkin, a geriatric care manager at Third Age Services in Dallas agrees. “One of the biggest insights I gained from training with P.K. is that dementia patients aren’t acting illogically or inappropriately when they wander off, pace aimlessly and exhibit behaviors that drive their caregivers crazy,” Larkin says. “They are using coping mechanisms to deal with life the best way they can.”
Bill Eubank, 89, and his wife Betty, 85, still live in their own home—with a lot of help from their daughter, Karen Caroffino. For Caroffino, 62, a retired teacher in Cadillac, Michigan, the VDT training she received at the Curry House care facility for people with dementia was maddening. “I could only hear a word here and there from the facilitator, so I just stood in the room and didn’t complete any of my tasks,” Caroffino says. “It made me realize I had to keep things simple for my father. If I call out, ‘dinner is ready,’ he won’t come, but if I go into the living room and face him, he will.”
Easing the Frustration
“There are ways caregivers can help ease the frustration for everyone” involved, says P.K. Beville.
• Break up tasks into segments by giving loved ones one simple instruction at a time, like “brush your teeth.”
• Think visually. Instead of saying “get dressed,” show the patient two shirts and let him choose one.
• Keep the noise level down because it causes confusion and agitation.
• Make eye contact and hold objects in the “dementia window,” or field of vision, which is about two feet in front and two feet on either side.
• When assisting with eating, sit in front of patients so they see the food on the fork coming toward them.
• If a patient is wandering aimlessly and getting agitated, give him or her a simple task such as folding laundry.
• Rescue patients in strange or crowded situations. Don’t leave them alone to cope with mounting anxiety that can result in meltdowns.