Experiencing the world of dementia

Try to imagine what life would be like if you couldn’t move your legs or arms, you couldn’t communicate in any way—you couldn’t even make facial expressions—and your home was a care facility.

That was volunteer firefighter Cary Castagna’s experience in a dementia simulation exercise at Killam Health Centre. His name in the scenario was Clarence, a divorced man with estranged children, who was wheeled over to a window and basically left alone. As an added irritant, he had food left on his face.

“I felt I was in prison, trapped in my body,” says Cary. “It was cruel to look outside, just staring through a window. I could look outside but was not able to go outside, and these guys were running behind me. I couldn’t see what they were doing.“

Cary’s fellow firefighter, Joe Knievel, asks, “You couldn’t participate in either?”

Cary says, “Yes, it was a horrible feeling for sure, and it was only four minutes.”

One-third of the 45 residents living at Killam Health Centre have some form of dementia. If there were an emergency, the local firefighters would be called to evacuate the site.

Marion Merritt, who led the session, is the Manager of Continuing Care. She says empathy and an understanding of the challenges the residents face would be vital to getting them out safely.

“I get emotional doing this because of the way we treat the participants in the scenario. This is how our seniors are treated. It happens. It is my passion to change that—they are precious and they deserve more.”

Firefighter Trevor Levitt took on the role of Kim, a widower who was visually impaired with Parkinson’s dementia. In the scenario he kept asking to go to the washroom, but staff repeatedly put him off: he just went. He is on a schedule. They were too busy.

Trevor, who has a family member with a disability, admits the experience deepened his understanding.

“Although they have dementia, they are still communicating in some form. You have to look at each person individually. You have to be patient and look for the clues. We are all human beings.”

In addition to the firefighters, medical students, local emergency medical technicians and Killam Health Centre care staff have gone through the experience. Marion says participants occasionally have very strong reactions to the training—everything from tears to frustration, even anger. Her message is one of compassion.

“Your minutes of discomfort are our residents' reality. We need to see them as individuals and we need to do what we can to make their lives better.”