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Students craft empathy kits to promote understanding of degenerative diseases

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Erin Clabough’s psychology course, called the Neurodegenerative Experience, was designed to help students develop a deep understanding of diseases that attack the brain and nervous system.

“These govern who we are, our memories, the way that we behave with other people," she explains. "It’s very easy to ‘other’ a person who has something wrong with them in their neurons.”

So students picked three of about 600 neurological conditions that afflict people – Alzheimer’s, Parkinson’s and Huntington’s Disease, for intensive study.

“The class and I worked with patients, caregivers, neurologists," she recalls. "We worked with non-profits, basic researchers who are doing work on this disorder in petri dishes, and we tried to make a picture about how it would feel to live in this person’s life, in this world of a person with this disorder for a day.”

To do that, they came up with five activities that would mimic or replicate each disorder and demonstrated them in a five-minute video. Alzheimer’s patients, for example, routinely misplace things.

“Misplaced objects are sometimes found in very unexpected places, like keys inside the fridge for example," says one video's narrator. "To replicate the symptom , have a friend hide your keys, phone or another object that you frequently use. Spend 15 minutes looking for the object or until you find the object – whichever is shorter.”

The video and a list of props are included in what students called Empathy Kits. For Huntington’s Disease, they also contained a hand-written note to share when out in public, explaining the nature of the illness and promoting compassion.

“If someone looks strangely at them, they give them the card.," Clabough says. "It explains what they’re doing, so that you have this social interaction part as well.”

“If you see a person behaving strangely,” the card reads, “they may have Huntington’s Disease. They may appear distracted or have trouble walking, but if you look closer you may see the person and not the disease.”

The kits also found a way to convey the depression children of Hungtington’s patients feel, knowing they may develop the disease and seeing how difficult it is to live with the random interruptions of daily life caused by this condition.

We said, ‘Every time you experience your day today, and there’s something pleasurable that you could do, flip this coin, and if it’s tails you get to do the activity, and if it’s heads you don’t,'" Claybough says. "The patients that we worked with really liked this way of approaching it, because they felt like it really encapsulated this whole very 50/50 chance of inhering the gene from your parent who was afflicted with the disorder to begin with.”

Patients who helped the students to build empathy kits expressed gratitude for this educational effort, and Professor Clabough was heartened by the mission.

“We were detached from so much that we normally were connected to during the pandemic. It seems really beautiful to bring this out as we’re coming back out to the world, and the idea of empathy as this universal skill that we can cultivate, that it’s a teachable thing, is really important to understand about these empathy kits. If we all do this and we all get better at it, it’ll transfer those skills to other experiences.”

She and her students have begun presenting their videos and exercises at schools and assisted living centers in Charlottesville and Albemarle County.

To view the videos, follow this link:

https://news.virginia.edu/content/empathy-kits-offer-look-what-its-living-neurological-disorder