St. Vincent Charity Medical Center hosted a virtual dementia tour on Thursday, May 3, 2018 for caregivers who wanted to experience how a patient with dementia sees, hears and feels in their world.

Ran by Crossroads Hospice, the tour is described as an active empathy exercise where participants learn what it’s like to have dementia as they try to perform everyday tasks. Each participant wears sensory-numbing apparatus, such as two layers of gloves, headphones that create sounds and background noises, darkened glasses that create the feeling of macular degeneration and spike shoe inserts to create sensitivity issues for the feet. They are then asked to read charts that list several tasks to perform within eight minutes.

“I was surprised at how physically uncomfortable it was to complete the tasks. I had to put my body in awkward, uncomfortable positions to get things done. If I had the body of an elderly person I wouldn’t have been able to do it,” said Megan Lincoln, clinical pastoral care resident, St. Vincent Charity Medical Center. “It makes me wonder if it’s frustrating for them when I talk to them in a clinical setting because they may not fully understand what I am saying or be able to fully see me.”

That why it’s important to use the element of touch to let people suffering from dementia know you are present and speaking to them, advises Wendy Zurca, provider relations, Crossroads Hospice. She suggests avoiding trying to engage them from the side or at an angle, but to speak with them head-on and to try to engage in eye contact.

After the tour, participants received a checklist of the observations made by a facilitator of how they acted while attempting to complete the tasks then explaining why a dementia patient might act in that manner. 

They also received a list of suggestions for caring for dementia patients including to give ample time for tasks; cut down on noise and distraction; allow them to do the same thing over and over, because it makes them feel safe; stay positive about all the good things they can do and all the good times you will have through this journey together; and take care of yourself. 

“It’s like living your life like a puzzle but without all the pieces,” said Marie Talley, clinical pastoral care resident, St. Vincent Charity Medical Center. “It took me forever just to read the instructions for the exercise and I feel agitated now just from the 10 minute experience. I can’t imagine living like this every day.”

More than 150 St. Vincent Charity caregivers from security, nursing, social work, pastoral care, medial residents, physicians, quality management and more took part in the experience. Providing a hands-on experience helps caregivers better identify the day-to-day struggles of dementia sufferers, improving their ability to provide compassionate care.    

“I feel very humbled by the experience,” said Anna Luzar, nursing director, St. Vincent Charity Medical Center. “My father had dementia. He’s been gone 18 years but I wish I could just give him a hug and say I’m sorry you had to live like that.”