Most of us will never truly know what it’s like inside the mind of someone afflicted with dementia or Alzheimer’s.
But there are ways to get a glimpse.
On a recent afternoon at Atria El Camino Gardens, a senior living and memory care facility in Carmichael, staffers and family members took a “virtual dementia tour” to experience what those brain impairments can feel like.
Each participant was “garbed up” with four accessories designed to mimic the sensory handicaps of dementia and aging. Thick gardening gloves simulated the numbing effect of arthritis or neuropathy on hands and fingers. Plastic, ribbed shoe inserts replicated the stinging effect of neuropathy on feet. Sunglasses with extra-dark lenses mimicked the cloudy vision of glaucoma, cataracts or macular degeneration. And a set of earphones, programmed with everyday noises – a siren wailing, a door slamming, people talking, etc. – echoed the often-confusing distractions that can irritate those with dementia.
“It’s important to join their world,” said Ingrid Weber, Atria El Camino’s life guidance director. “They’re already confused, so even something as simple as slamming a door scares them. If you have a little insight of how these things affect (dementia and Alzheimer’s patients), you’ll have a better understanding and a better way of approaching and dealing with (them).”
An estimated 5 million Americans live with Alzheimer’s, including about 610,000 in California, according to the national Alzheimer’s Association. For family members or paid caregivers, handling the confusion, irritability and angry outbursts of Alzheimer’s or dementia patients can be baffling, if not exhausting.
“Nothing is going to let us know exactly what it feels like to have Alzheimer’s or dementia. But anything that helps people have more empathy is positive,” said Michelle Johnston, regional director of the Alzheimer’s Association’s office in Sacramento.
The virtual dementia tour was launched in 2001 by Second Wind Dreams, a Georgia-based nonprofit group whose mission is to “change the perception of aging,” as well as fulfill the wishes of seniors in elder care facilities, similar to Make-A-Wish for critically ill children.
Second Wind’s founder, geriatric specialist P.K. Beville, designed the dementia simulation experience based on brain research and insights from dementia patients in various stages of the disease, who often have moments of clarity when they describe what it feels like.
In California, the dementia virtual tours are offered by large senior-living chains, including Atria, Senior Helpers and Silverado, both to their own staffers and the general public.
With many dementia patients, “they’re not able to verbalize what’s bothering them,” said Atria’s Weber. “If you’re rushing them or not understanding the reasons why they’re slow at accomplishing a task, that’s when they’ll get irritated or anxious. All these things they’re experiencing medically, it triggers behaviors that are difficult.”
Mike and Nancy Zielenski showed up at Atria to participate because his sister, 75, has been diagnosed with mild to moderate Alzheimer’s and is frequently angry or prone to outbursts.
“We want to know how to deal with her in a positive way. Her brain is not working the same as ours,” said Nancy, a retired kindergarten teacher.
The Foothill Farms couple, both in their late 70s, gamely donned the glasses, earphones, gloves and shoe inserts. “It feels like little needles,” Mike exclaimed when he first stood up with the inserts in his shoes.
Walking gingerly, they were guided by staffers into a one-room studio apartment and given five tasks to complete: Fold a set of sheets and towels; match socks; set a table; pour water from a pitcher into a plastic cup; write a letter to a loved one and fold it into an envelope.
In the darkened room, both went to work on their assigned tasks. With the bulky gloves, they pawed through a pile of socks to sort them. While folding laundry piled on the bed, Mike sometimes fumbled trying to match up corners on bath towels. They both managed to pour water into a plastic cup and were moderately successful in setting out plastic plates and silverware at a tiny dining table.
“I couldn’t see and could hardly hear,” said Mike, after their five-minute test was over. The worst part, he said, was the incessant noise in his headphones. “It felt a lot longer than five minutes,” said Mike, a retired real estate broker. “For my sister, she doesn’t ever get a break (from the noise).”
That’s the kind of empathy and understanding the virtual dementia tour is designed to impart. (Atria El Camino’s next virtual tour, free and open to the public, is scheduled for Dec. 15. Call 916-488-5722 for details.)
South Sacramento resident David Babayco, whose 91-year-old mother is a dementia resident at Atria, said he went through the virtual exercise to “get a feel for what she’s going through. It’s very frustrating to deal with her at times, so this gives me a better understanding of what she’s experiencing.”
For caregivers and family members alike, one of the biggest frustrations with dementia patients is handling their constant repetition of questions and inability to retain an answer.
For instance, Johnston said, a widow whose husband died years ago may continually ask, “Where’s my husband? When is he coming home?”
“You want to say, ‘Don’t you remember?’ But for the individual, they don’t remember. They don’t have the capacity to remember,” Johnston said.
Rather than telling mom the upsetting truth, Johnston said it can be more effective to employ “creative truth” as a distraction. Instead, simply say: “Dad went to the store. He’ll be back soon.’ ”
Or, let’s say you show up to take a loved one with dementia to a doctor’s appointment and they’ve completely forgotten and demand why you didn’t tell them. Resist the impulse to say, “I’ve told you 15 times about the appointment,” Johnston said. Sometimes, she said, it’s easier to take the blame yourself: “Oh, gosh, I’m sorry, I must have forgotten to tell you. I had a lot on my mind.”
“Maybe it’s not the accurate response,” Johnston said, “but it’s the one that’s going to keep both of (you) from being frustrated.”
Inside an Alzheimer’s mind
What: A “virtual dementia tour” is designed to give family members and caregivers a glimpse of what it feels like to live with dementia or Alzheimer’s disease. Participants wear gloves, headphones, sunglasses and shoe inserts that mimic symptoms of aging and dementia, then try to complete basic tasks, such as folding laundry, setting a table and pouring water into a cup.
Who: Second Wind Dreams, a Georgia-based nonprofit group that seeks to “change the perception of aging,” says its virtual dementia tour has been experienced by millions in more than 17 countries. A number of senior-living chains in California offer the tours, including Atria Senior Living, Silverado Care and Senior Helpers.
Other resources: Free classes for family members or paid caregivers of Alzheimer’s and dementia patients are offered monthly by the Alzheimer’s Association of Northern California. Classes cover living with Alzheimer’s, knowing early signs of the disease, handling difficult behaviors and using effective communication skills. For details, call 800-272-3900 or go to alz.org/norcal.