Dementia LIVE®: Caregivers Experience Dementia in Real Time

Presbyterian SeniorCare Network
September 2020

Dementia LIVE®: Caregivers Experience, Dementia in Real Time

Imagine that you’ve been given seven minutes to accomplish a verbal list of five tasks. Sounds easy, doesn’t it? You must find the white sneaker and tie the shoelaces. Then you must find your change purse and count out $.57. Now locate your checkbook and sign your name on a check. Now hang up the red blouse and move it to the rod. No, that’s the pink blouse—where’s the red one? Got it. Now… wait, what was the fifth task? Oh, yes—water the small plant. Oops—time’s up.

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If you’re wondering why those five easy tasks could hardly be accomplished in seven minutes, it’s because you were wearing headphones that played a range of muffled sirens, train whistles and crowd sounds that made it hard to concentrate. Add to that a pair of blackout glasses that narrowed your field of vision and thick cotton gloves that made it hard to feel and manipulate items.

You’ve just gotten a glimpse into daily life for a person living with moderate to late-stage dementia. That’s the idea behind Dementia LIVE®, a dementia simulation program that’s helping caregivers get inside the minds of the people they’re caring for, resulting in a deeper understanding of what it’s like to live with moderate- to late-stage cognitive impairment and sensory changes. The headphones simulate the inability to process and discern important sounds from background noise; the glasses simulate vision impairment from agerelated eye problems; and the gloves simulate the loss of touch sensation and fine motor skills that are common with aging.

Presbyterian SeniorCare Network uses Dementia LIVE training for all direct caregivers throughout the network so they can use their personal experience and apply it to their relationships with residents living with dementia.

Because dementia is so individualized, I have to respond in the right way for the person I’m interacting with—and the key to doing that is getting to know that resident personally.

-Bridgette Siciliano

For Kelly Frame, lifestyle engagement associate at Woodside Place, and Bridgette Siciliano, administrator of personal care at Woodside Place and Adult Day Services, both at our Manchester Commons community in Erie, the Dementia LIVE experience was a real wake-up call. “I was surprised that people would have to live like that all the time,” Kelly says. “It makes you understand how having all that stimuli could be overwhelming for someone.”

“I found the experience aggravating—it created so much anxiety,” says Bridgette. “I didn’t expect so much noise—it was hard to focus. The experience has given me a better understanding of the residents and what they’re going through.”

The goal of the Dementia LIVE experience is to help each caregiver become the most compassionate caregiver they can be through a deeper understanding of dementia. “Dementia LIVE made me realize that every person’s dementia is unique to them and the right way to help one person might not work for another person,” adds Bridgette.

Being person-centered is at the heart of everything we do at Presbyterian SeniorCare Network, and Dementia LIVE is just one more way we train our caregivers to be their best. “I feel that we, as caregivers, have to constantly evolve and be flexible with our residents because their dementia is changing them,” says Jill McMurdy, RN, Woodside

Place neighborhood manager at the Network’s Oakwood Heights community in Oil City. “We have to meet each resident where they are and live in the moment with them. A resident might not remember my name, but they know my face, my smile—they can feel my compassion and know that I’m here for them.”

DEMENTIA LIVE®: FROM A COACH’S PERSPECTIVE

In the year that Presbyterian SeniorCare Network has been using Dementia LIVE® training, our dementia care coordinators and certified dementia practitioners (CDPs) have embraced this immersive technology, successfully training 549 employees across the organization. In 2020, all team members, regardless of their role, will receive Dementia LIVE training as part of their new-hire orientation, exemplifying the value of the training in our communities.

Beth O’Brien, social services director at our Oakwood Heights community in Oil City, recently was named a Dementia LIVE coach of the quarter by AGEucate, the company that markets Dementia LIVE. She is both a CDP and a Dementia LIVE training coach. According to Carrie Chiusano, executive director of the Presbyterian SeniorCare Network Dementia Care Center of Excellence, Beth was singled out for the award because of her excellent communication skills.

“Beth takes the time to truly listen to others. She hears their messages, observes nonverbal cues and adapts the mood to make sure everyone is at ease,” says Carrie. “Beth doesn’t just take the time during Dementia LIVE trainings. She is present in the neighborhood for real day-to-day teachings. She’s there, right in the moment, sharing her knowledge every chance she gets.”

The most powerful part of training for Beth is what she calls the “aha moment”—the point of realization that hits someone and reveals what it must be like for a person living with dementia. “That aha moment gives them firsthand experience and will change the way they interact with our residents,” says Beth, “The empowerment session at the end of the experience also is very rewarding. It allows me to debrief the group and use real-life experiences to teach how we should be approaching and working with people living with dementia.”