An Exercise in Empathy
Masonic Homes Kentucky hosts Virtual Dementia Tour®
By Courtney Martin, Life Enrichment Director of Programs at Masonic Home Louisville
According to P.K. Beville, a geriatric specialist and founder of Second Wind Dreams®, when someone is diagnosed with dementia, their friend level drops by 50 percent. Unlike many other medical diagnoses, dementia carries a social stigma. People with dementia are characterized as forgetful, angry, argumentative or even withdrawn. However, understanding the why and what is going on in their world can go a long way to improving relationships and easing the burden of care.
On November 30, Masonic Homes Kentucky hosted its first Virtual Dementia Tour® open to the public.
Courtney Martin, director of programs and memory care for Masonic, says she has been facilitating the Virtual Dementia Tour through the Kentucky Healthcare Association since 2010 and decided it was time to bring it to Masonic Homes. She used it as sensitivity training for her staff but wanted to open it to the public to help raise awareness and understanding for what those with dementia experience daily. “It does change your perspective about the disease and what it is capable of doing to people and families,” she says.
Karrie Kimbrough, assistant life enrichment coordinator, helped prepare participants pre-tour. First, they took a short survey including questions such as: Do you feel capable of carrying out simple tasks? Are you relaxed? Do people with dementia get the care they need?
Then, Karrie and her colleagues helped outfit participants with items to simulate the characteristics of dementia. Clear plastic shoes inserts, a material like office chair mats, with the spikes pointing up were used to simulate the pain of diabetic neuropathy. Oversized gloves placed on the wrong hands simulated arthritis. Sunglasses blacked out except for a pinhole replicated vision problems. Headphones that played white noise were not so much for hearing loss but to replicate difficulty in understanding and processing words and sounds.
Participants then were directed to a room specially equipped for the tour. Once inside, they were given a set of mundane tasks spoken in a low voice – things like putting pills in a bottle, putting pants on or putting a belt through belt loops, writing and remembering a grocery list. The goal, said Karrie, was in experiencing just a small moment of those frustrations, participants would be able to see what it’s like through their loved ones’ eyes and better sympathize and empathize with them.
Participants spent about 10 minutes inside the tour. Afterwards, they took the exact same survey, followed by a debriefing with activities director Judy Parsley to help them better understand what they had experienced and how that correlates to their loved ones’ experiences and behaviors.
When it comes to sound, one of Judy’s main points was that people with dementia often can’t process or filter out noises. But, she said, “your body language and tone of voice gets through.” So, staying calm helps minimize agitation. Additionally, “doing familiar things helps them cope.” So, let them wash the dishes, even if they put them away wrong, because it gives them a sense of purpose and calm.
The turnout for the tour was a good mix of community members, resident family members and staff. Each had their own reaction based on their own experiences and closeness to the disease, but there was a general level of amazement and even shock.
The tour is an insightful experience for those who have family members recently diagnosed with dementia, like Carol Lord. Her mother was recently diagnosed with dementia and Alzheimer’s and said her family is trying to find out as much as possible. Carol said the information about vision and feet problems was informative for her, as her mother suffers from both. The experience of “trying to deal with situations like that” gave her insight into what can lead a person with dementia to be argumentative. Overall, Carol said, “Even though I’ve read about it, this kind of brought it home.”
There are many different types of dementia and those who suffer from the disease can experience a variety of symptoms. Suzette White is an employee of Masonic. Her mother has Lewy body dementia, and she said, “It gave me a little teeny glimpse into her world.” Suzette’s biggest takeaways were to leave the lights on because of the dimness of vision and to be in front of her mother when she speaks to help her focus through the noise. “I got a better feel for what she’s experiencing and how to make home more suitable for her,” said Suzette.
Kelly Jenkins and her daughter attended the Virtual Dementia Tour because Kelly’s mother is a resident at the Masonic. Kelly was truly moved by the experience. “It was very eye opening in what mom goes through,” she said. Kelly commented on the difficulty level of doing anything. Out of five tasks she was given, she believes she only did one and probably did not do it correctly. “Mom lived with us for a while before she came here. Now, I have a whole new understanding,” says Kelly.
Through experiences like the Virtual Dementia Tour, understanding and empathy for people with dementia will continue to grow.
