My hands are impaired by gloves and my palms are starting to sweat. My feet are tingling, simulating arthritis and nerve pain. Dark glasses block my vision to simulate macular degeneration, a common eye disease among elders. I’m listening to directions as the virtual dementia tour begins in the Hospice of Homer office.
“During the next few minutes we’ll attempt to give you a sense of what dementia will be like. Your physical and sensory abilities will be altered,” said Holly Dramis, executive director of the local hospice, as she gives participants directions. “You’ll be asked to perform five simple tasks.”
Dementia is not a specific disease. Rather, it’s a broad set of experiences of cognitive and physical difficulties, including problems with memory, communication, attention and completing daily tasks. It most commonly affects older adults, but is not a normal part of aging.
“Do your best to immerse yourself in the setting and be conscious of your feelings,” Dramis said.
The rates of Alzheimer’s disease and dementia are rising across the country. But the signs and symptoms of dementia vary widely from person to person, and it can be difficult for family and caregivers to understand the experience of impaired ability to remember, think or make daily decisions. The virtual dementia tour seeks to bridge the divide by putting people in the shoes of someone experiencing dementia.
“In addition, we’ve blocked your peripheral vision,” Dramis said. “A common behavior we see with this disease is when they are approached from the left or right, they can’t tell if someone is there, and what they’re supposed to do. In order to help them with this, we approach directly in front of their face when communicating with them or assisting them.”
The tour continues into the makeshift apartment, to give attendees an experience of what it could feel like to maneuver and attempt small tasks with dementia. Organizers don’t want to disclose the full details of the tour — they want people to experience it for themselves.
The virtual dementia tour is an evidence-based simulation designed by the Georgia-based nonprofit Second Wind Dreams. It’s facilitated by Alzheimer’s Resource of Alaska as an empathy-building experience, as part of a four-day series of awareness raising events in Homer this month.
“It’s a powerful reminder that sometimes the ‘challenging behaviors’ we see in elderly people, maybe there’s a reason,” said Debbie Chulick, a dementia educator.
She sees a transformation for caregivers and participants in the 10-minute virtual tour. It can be frustrating, lonely, or overwhelming. She said she’s seen people cry.
In a debriefing after the tour, organizers pass out a pamphlet with suggestions on how to support someone with dementia: Give ample time for tasks, cut down on noise and distractions, make them feel safe and encourage and reinforce the positive things they can do.
“Even working in this field, I say, ‘Mom, come on, we got an appointment, we have to move a bit quicker,’ and she says, ‘Debbie, I’m doing the best I can,’” Chulick said. “And it's a reminder: time out, step back, take a breath. She’s eighty-something, of course she’s doing the best she can.”
Homer resident Andrea Stineff debriefed with Chulick after the tour.
“My dad has dementia and I found myself, when I set the table, I was doing the motions like him. I’m like, ‘Oh my god, that’s exactly what he does!’” Stineff said. “The way I kind of scooped everything up, and was kind of staring — it was weird.”
Alzheimer’s disease is the most common form of dementia, and now affects more than 12,000 Alaskans, and almost 6 million people nationwide. And the numbers are growing.
Alzheimer’s Resource of Alaska provides education, care coordination and memory screenings to support those impacted and ensure quality of life.
Dramis — director of the local hospice — said they’re also seeing an increase in the number of individuals with dementia in Homer. They provide support for caregivers and families with a team of volunteers, and a caregiver support group via Zoom.
“Caregiver burnout is really, really high,” Dramis said. “It's so hard for them, because dementia is different every day. So it means that they have to constantly [remember] what worked yesterday doesn't work today. And you have to go back to the drawing board and start running through your list of things that they might need.”
The physical and cognitive impairments of dementia can vary widely: There can be intense and overwhelming emotions, anxiety and depression. So, Dramis said, leading with compassion and empathy is important.
“It's not that this person has a disease and they don't understand. It’s, ‘I don't understand what they're trying to convey to me,’ and ‘how can I work with them?’” Dramis said. “To improve my understanding of what they need, instead of the other way around. It's very patient-centered.”
If you or a loved one is experiencing memory problems or other symptoms of dementia, contact a doctor or medical provider. There is currently no cure for Alzheimer’s disease but according to the Centers for Disease Control and Prevention, medications can help protect the brain and manage symptoms.
For more information about the Hospice of Homer dementia caregiver support group, volunteering or resources, visit their website. They also just launched a “Good Death Book Club” which meets each month to discuss death, loss and grief.
