Simulation Allows Caregivers to Experience the Daily Challenges of Dementia
January 29, 2021
APPLETON, Wis. – As the Baby Boomer generation ages, a “silver tsunami” is sweeping throughout society. Nowhere is that felt more distinctly than in the health care community.
“We are noticing a definite increase in the number of residents coming to our campus with a dementia diagnosis,” said Mike Garrigan, Dementia Specialist and Life Enrichment Supervisor for The Heritage Assisted Living Center and Peabody Manor Skilled Nursing Facility operated by ThedaCare. “We work with a primarily geriatric population, and the prevalence of dementia is obvious.”
He noted the Centers for Disease Control and Prevention (CDC) now lists dementia as the sixth leading cause of death, surpassing diabetes and trailing just behind strokes. A 2018 CDC study listed dementia as the cause of death for 122,019 people nationwide and 2,453 in the state of Wisconsin.
“That number continues to rise,” Garrigan said, noting that Alzheimer’s is just of one of 200-plus dementia diseases. “Dementia is an umbrella term, and Alzheimer’s Disease is the most common, covering about 60% of dementia cases. However, there are many more types of dementia, all with differing effects on the brain.”
Those increasing numbers of patients with dementia put a significant stress on those who care for them.
“Some of the biggest challenges our caregivers have are the changes in behavior that are associated with dementia,” Garrigan said. “As dementia progresses, the residents aren’t able to communicate their needs or process information as well. Those results look like challenging behavior to us; they may wander around, repeat phrases, act out aggressively or there may be a change in their personality. It’s critical to remember that they are suffering from a disease that is responsible for that behavior. We cannot imagine how incredibly difficult that is for them.”
For that reason, Garrigan and the leaders of The Heritage and Peabody Manor elected to provide their staff with specialized training to help them understand the realities of living with dementia.
They chose a program called Virtual Dementia Training (VDT) offered by Second Wind Dreams, a non-profit organization whose mission is to change the perception of aging by offering innovative educational opportunities to caregivers and communities. According to the Second Wind Dreams website, www.secondwind.org, “VDT uses patented sensory tools…to enable caregivers to experience for themselves the physical and mental challenges those with dementia face, and use the experience to provide better person-centered care.”
Those sensory-altering devices including ill-fitting gloves to mimic tactile dysfunction, darkened eyeglasses to distort vision and headphones that play jumbled sounds to distract and confuse the individual, all of which produce reactions comparable to what those suffering from dementia exhibit. During the training, the participants are asked to accomplish basic everyday tasks and exercises while wearing the sensory-altering devices.
“We basically just alter all their senses to mimic the confusion of those living with dementia,” Garrigan explained. “Our goal is to offer some insight as to what these patients and residents are coping with, which is not easy to do. We want to be compassionate and sympathetic to their experience.”
Prior to beginning the VDT experience, Garrigan, Erin Moua and the other ThedaCare VDT facilitators have caregivers fill out a survey asking about their comfort level in working with dementia patients, whether those patients get the care they need and whether the patients’ emotional needs are met.
After the training, the caregivers are asked to fill out a post-training survey asking similar questions, in addition to asking how the experience affected them and what they will do differently moving forward.
“We have discovered that VDT is a very personal experience for those who work with dementia patients regularly,” said Garrigan. “For that reason, we are doing the training in small groups, which makes it easier for people to express their feelings when we debrief after the experience.”
The outcomes are significant.
“After the training, participants are able to associate and empathize with patients where maybe before, they didn’t fully understand what was causing certain behaviors,” he said. “When we explain that during the VDT experience, they were wandering around, talking to themselves or digging through drawers, the light comes on and they say, ‘Yes, I see that kind of behavior every day.’”
Some common reactions from participants after the training include:
“It was more difficult than I expected, I will always remember how confused I felt.”
“I felt alone and scared; the difficulty and loneliness people must feel will stick with me.”
“The thing that upset me most was not knowing what to do. It really opened my eyes to what
dementia is like.”
“There was so much going on at once, it was hard to concentrate.”
“I didn’t understand how it affected all of one’s senses.”
“It gave me a feeling of helplessness.”
Many participants offered ideas how the experience would change their caregiving methods:
“I will be more patient and understanding when my residents need constant reminders.”
“I will try to be more comforting, talk louder and slower, looking for short, simple answers.”
“I will talk slower, give more demonstrations and one-on-one help.”
“I will try to relieve some of the anxiety they feel and put myself in their shoes.”
The VDT experience has resulted in several changes in how The Heritage and Peabody Manor team members interact with residents.
“We’ve taken a step to back to examine the way we’re doing things, why we’re doing things and how that affects our residents,” Garrigan said. “We have made many changes on campus to make it more dementia friendly.”
For example, Garrigan explained that leaders now understand that many behaviors stem from external stimuli. Now teams are working hard to decrease noise and distractions in the facility.
“Our primary goal is to give people living with dementia the best experience we can here in our facilities, so we are looking at what we can do to alter the environment and possibly help prevent some of those responses that develop,” he said. “The truth is, some people may live with dementia for as long as 20 years. We want to give them the most home-like experience we can.”
Despite the coronavirus pandemic, The Heritage and Peabody Manor were able to have 75 percent of their staff participate in the training in 2020, Garrigan said.
“We had to be creative to keep the program going during the pandemic, and we found workarounds,” he explained. “In 2021, we plan to have the rest of our staff go through the VDT experience, and it will be offered to all of our new employees as part of their orientation.”
Garrigan hopes to expand the program to offer the VDT experience to first responders, family and community members.
“We want to do everything we can to help the public recognize the growing prevalence of dementia and understand there are ways to make our community a little more dementia friendly,” he said. “We need to better understand the experiences of loved ones, friends and neighbors, and we believe training like this can do just that.”