An eight-minute simulation lets caregivers experience dementia

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Seven million people in the U.S. suffer with some form of dementia. For eight minutes recently, I was one of them.

Or at least I experienced some of what it might be like to suffer with dementia, through participation in the Virtual Dementia Tour. The program simulates the challenges a dementia patient experiences in doing everyday things, and helps a normally functioning person to understand — through personal experience — the behaviors that can cause.

Nisha Patel, an associate with Crawford Strategy, and I participated in the experience at Autumn Leaves, a new memory care facility that opened last month on Pelham Road. Neither of us had any idea what to expect.

The initial introduction involved some paperwork and a couple of general questions: How are we feeling today? Do we feel capable of completing everyday tasks?

Jackie Love, Autumn Leaves’ regional director of sales and marketing for startup communities and a certified VDT facilitator, explained that we will be outfitted with a few items, given a series of tasks, and taken to a darkened room to complete them. The experience will take eight minutes.

Our tools include a pair of darkened glasses adapted to simulate macular degeneration, failing peripheral vision, and the general haziness of vision that is a part of normal aging; overlarge gloves that have the ends of the fingers plugged so you can’t get your hand all the way in and, on the dominant hand, two of the fingers sewn together; a pair of headphones streaming white noise and a continuous loop of sounds and talking; and finally, a pair of needle-like studded shoe inserts, designed to simulate the pain of peripheral neuropathy.

Love read each of us a separate list of five daily tasks (set the table, count out a specific amount of change, draw a picture of your family). And then our eight minutes in the simulation began.

In the end, neither Patel nor I could complete all five tasks. In fact, neither of us could remember all five tasks. Love points out that the tasks are given quickly and simulate how hard it is for someone who may be experiencing cognitive loss to follow what we would consider “basic” instructions.

“We give too many tasks at once and talk too quickly,” says Love, explaining that a person with dementia needs focus and streamlined tasks, doled out patiently, one at a time.

The tasks that I could recall were very hard to stay focused on: the pain in my feet was debilitating, the constant noise in my head and occasional loud bells or sirens frightened me, and the big gloves made setting the table and writing a note slow and frustrating. All are fairly common afflictions and behaviors.

The Virtual Dementia Tour is the brainchild of Atlanta gerontologist PK Beville, who was frustrated by the fact that “no matter how many in-services I did, how much role-playing or on-the-floor demonstrations I did, people continued to talk really loud to people living with dementia, pulling and tugging on them, over-medicating them because they weren’t compliant, and putting them in acute-care hospital settings when they couldn’t get them to calm down.”

As part of her doctoral study, she decided to tackle the challenge of “making the normal person feel what someone with dementia was dealing with.” Not only how it feels, says Beville, “but the behavioral response.” The anger, frustration, wandering, and hoarding that are often characteristic of dementia.

Since 2002, more than 2 million people in 20 countries have experienced dementia through this simulation.

While the program provides insight to caregivers, the next big thing for Beville is how it can be used to change the way dementia patients are cared for. To that end, it is the centerpiece of several studies.

One involves 169 nursing homes where information is being gathered on patient care, medications, and acute-care hospitalizations before and after the staff and caregivers experience the simulation. Another is funded by a grant from the Centers for Medicare Services and combines the VDT with a dementia competency exam to assess whether staff develop more “person-centered approaches to their caregiving,” Beville says.

Beville runs a nonprofit called Second Wind Dreams — a “Make-A-Wish” for seniors — and the Virtual Dementia Tour is owned by and benefits that foundation. Autumn Leaves partners with Second Wind to offer the program in its facilities. As part of the ramp-up to open the Pelham Road facility, one of its 49 memory-care-only care facilities in the U.S., it is using the program to train and evaluate staff.

But Love says the company wants to be a “caregiver resource,” so it has plans to offer the VDT to first responders in the area and caregivers regardless of where their family member resides. “Even if they aren’t a patient here, it doesn’t mean we aren’t going to provide resources to help them,” she says.

When Patel and I completed our program, we both rushed to rip the inserts from our shoes. I felt relieved, disoriented, and — as someone with dementia in my family — deeply sad. Those are all common, says Love.

“Most people are upset when they are done because they realize how hard it is for their mother or father to do these things,” says Love. “It’s overwhelming for many and they want to get out of the room. That’s the hardest part: We can walk out and take all those things off, but they can’t.”

Caregivers interested in being included in a complementary DVT program should contact Meagan Peppers at 864-558-0383.

Low-tech, low-cost

With a tech buzzword in its name, one is surprised to see how low-tech the Virtual Dementia Tour really is. But it is that way for a reason.

Creator PK Beville received many requests from facilities asking for more programs. She says, “That got me thinking about developing it in a way that would make it easy to get it out to the public.” And relatively inexpensive.

The Georgia Tech Research Institute is working with Second Wind to develop an augmented reality version of the program that was being tested recently in Las Vegas and Wisconsin. While some areas may be enhanced, Beville says, the costs will be prohibitive for most facilities until it can be scaled down.

For now, she says, “It’s low tech to make it accessible.”

Profile of the patients

• Alzheimer’s disease is the most common form of dementia.

• 5.5 million in the U.S. have Alzheimer’s.

• 66% of those afflicted with Alzheimer’s are women.

• Blacks are twice as likely to get a form of dementia.

• Hispanics are 1 1/2 times as likely to have a form of dementia compared to older whites.

• 33% of seniors die with some form of dementia.

Profile of caregivers

• 15 million people in the U.S. are caring for people with Alzheimer’s and other dementias.

66% of caregivers are women.

34% are over 65 themselves.

41% of caregivers have a household income below $50K.

25% of caregivers are of the “sandwich” generation, caring for both a child under 18 and an aging parent.

Cost of Alzheimer’s in 2017, projected

Total: $259 billion

Medicare and Medicaid: $175 billion (67%)

Out of pocket, unreimbursed: $56 billion (21%)

Uncharacterized: $28 billion (10.8%)

Source: Alzheimer’s Association, alz.org/facts

Of people who live beyond 55, 1 in 6 women will develop dementia, 1 in 10 men.

Source: Institute for Dementia Research and Prevention, Louisiana State University System

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