DEER ISLE, Maine — For family caregivers or health professionals caring for someone with Alzheimer’s disease or another form of dementia, compassion is not enough.
“Compassion is essential, but if you have empathy, too, it’s a whole different thing,” Kate Robinson, a registered nurse at the Island Nursing Home and Care Center in Deer Isle, said. And because empathy, by definition, can only be achieved by having shared the experience of dementia and its associated emotions, the facility does its best to provide the opportunity.
Using a program called Virtual Dementia Tour, nursing staff, community members and other caregivers approximate the cognitive, emotional and physiological changes associated with age-related dementia. In the past year, the nursing home has provided the tour, free of charge, to emergency responders, hospice workers, family caregivers, hospital workers and others in the community, as well as to their own nursing staff.
I drove down to Deer Isle recently to check it out. Here’s what happened:
Outfitted with knobby shoe inserts to simulate the discomfort of bunions, bulky cloth gloves for neuralgia and light-restricting goggles for macular degeneration, I am led alone into a very dark room I have never been in before. I am wearing a headset that delivers a stream of broken conversation, laughter, fragments of music and rushing background noise into my ears — confusion, anxiety, distractibility — punctuated by periodic explosions, collisions and sirens (nerves). Before the door closes behind me, I am verbally instructed, in a quick sequence of sentences, to complete five tasks while in the room:
— Find your white sweater and put it on.
— Set the table for lunch.
— Fold the towels.
— Write a four-sentence note to your family.
— Fill the glass half-full with water.
The door shuts. The room is black, except for some weak strobe lighting. I can navigate it only by groping around with those gloved hands, shuffling and mincing to avoid falling, peering through the tiny holes of the goggles, trying to ignore the aural assault of the headset.
What was the first task? A sweater. It must be here somewhere. I walk smack into a round table. There’s no sweater here, but I find a pile of plastic utensils and some paper napkins. I know how to set a table, but I can’t really see it and there’s something I can’t identify in the way. So I set two places, clumsily, and leave the rest of the utensils in a heap.
I’m still looking for the sweater. I can’t remember the other tasks. I shuffle around, timid, hands outstretched, unsure of how far into the darkened room I’m allowed to venture. After a time, a shadowy figure emerges out of nowhere and takes me firmly by the elbow. “You’re doing just fine,” a voice shouts above the din in my ears. That’s a lie, I think, with some irritation. Still, it is comforting to know someone is paying attention. I am led further into the room, and then again I am alone.
I stumble against another table, smaller than the first. My clumsy fingers pick up a long, narrow object. A pen? To write a note to my family? I search for the ink tip or for a cap to pull off. Nothing. A siren begins wailing in my ear. I turn over the object and realize it’s a toothbrush. Was brushing my teeth one of my tasks? I find a tube of something on the table and assume it’s toothpaste. I squeeze some onto the brush, somewhere near where the bristles must be, then think better of the whole idea. There’s no cup of water, for one thing, and where would I spit, and who else has used that toothbrush?
“Where is that sweater?” The echoing voice is mine, amplified somehow by the headset. The sweater’s existence is one thing in this weird netherworld I feel certain of. I find myself standing over a bed. Faintly, I see a blurred scattering of light-colored cloth on the dark coverlet. Is there a sweater here? I identify a tee shirt, some neckties, socks. Some small hand towels. No sweater. There’s a blast of noise in my ear like a car crash. I wander away, then come back and fold the towels. It’s something I know how to do. I am pretty sure it was on the list.
On the other side of the room, I bump into yet another table. My eyes make out a flat, white rectangle of paper. I find the pen. I haven’t really thought about what to say in my note. In the dark, here’s what comes out, in big, misshapen letters:
“I am very confused. I can’t find my sweater. The room is so dark. I don’t know what to do next. Love, Mom”
I write the short sentences deliberately, a little bit theatrically. But, even as I form them, I can too easily imagine writing them in desperation, fury, despair.
I don’t know what to do next. Where the hell is the sweater?
I grope in the strobing darkness for a few more minutes, frustration building in me. How much longer do have to do this? I am grateful when a firm hand takes my elbow and steers me to the doorway.
Back out in the bright hallway, it is a relief to lift that noisy headset off my ears. I stand up tall, laughing and confident as I pull off the goggles, peel off the gloves and remove the lumpy inserts from my shoes. I was fumbling in the dark for about 10 minutes. Glad that’s over.
But for people with dementia, it is never over. It only gets worse, and it can last for years.
Becky Siebert, a longtime nurse and care coordinator at The Island Nursing Home and Care Center, says that about 85 percent of the residents there suffer from Alzheimer’s disease and other forms of dementia. Until recently, staff have not had the tools to understand what life is like for those residents.
Now, every employee of the facility is required to take the Virtual Dementia Tour, with a goal of improving the care provided to the residents.
Of course, no one really knows what goes on inside the head of someone with dementia, and no simple, 10-minute experience can tell us that. Outward manifestations are easier to see and can include a shuffling gait, forgetfulness, obsessive behavior, distractibility, inability to complete familiar tasks, talking to oneself, timidity and bursts of anger.
“We see that people who go through this short training often exhibit behaviors associated with dementia themselves,” Siebert says. The experience helps caregivers, both family members and professional staff, understand some basic guidelines, she says.
Slow down. Speak clearly. Be patient. Use simple sentences. Minimize outside noise. Organize rooms for light, simplicity and safety. Give plenty of guidance.
Since introducing the dementia training, the nursing facility has stopped piping music through its overhead system. The facility also no longer makes overhead announcements and provides plenty of space away from foot traffic, television or other unneeded stimulation. Home caregivers can take some of the same measures.
Cognitive changes associated with dementia include memory loss, difficulty communicating, difficulty with simple and complex tasks, difficulty with planning and organizing, loss of coordination and problems with orientation. Psychological changes may include personality changes, inability to reason, paranoia, agitation and hallucinations.
Symptoms typically worsen over time. People with advanced forms of dementia often develop infections, malnutrition and injuries related to falls.
The incidence of all forms of dementia, including Alzheimer’s disease, is poised to skyrocket as baby boomers age. Right now, according to the Alzheimer’s Association, 5.3 million Americans are living with the diagnosis, including one of every nine Americans over the age of 65. One-third of Americans over the age of 85 are afflicted. By 2050, unless a cure is found, a projected 16 million Americans will have Alzheimer’s.
“We are not prepared for this pandemic,” Siebert said. “We need to prepare. If people understand dementia, they’ll be better caregivers.”
The Virtual Dementia Tour program is available to organizations and facilities through the nonprofit organization Second Wind Dreams. Families who choose to care for their loved ones with dementia at home can find training, support and other resources through a number of organizations, including the Alzheimer’s Association, AARP and, in Maine, the five regional agencies on aging.