Development of a clinical care pathway for apathy in understanding why personalities change for people with Parkinson’s

Development of a clinical care pathway for apathy in Parkinson’s disease.

Bria Mele
PhD Student
University of Calgary
Graduate Student Award
Funded by The Lanka Charitable Foundation
$20,000 over 2 years

When Bria Mele’s grandfather was diagnosed with Parkinson’s disease just as she began her undergraduate degree, she noticed that his personality was changing.

Francesco Mele had always been a passionate, boisterous man who talked with his hands. As his disease progressed, medication alleviated his tremors and stiffness. But he became a quiet, passive person.

“I wondered if there was something else going on, so I started reading about apathy and depression and all of these non-movement disorder symptoms in Parkinson’s disease,” says Mele.

Mele’s questions eventually led her into a research career focused on one of these non-motor symptoms: apathy.

“Where people with depression feel sad, people with apathy feel nothing.”

Now a PhD student in Community Health Sciences at the University of Calgary, Mele discovered that up to 40 percent of people with Parkinson’s suffer from apathy. The condition is defined as the inability to feel strong emotions, and a lack of passion and motivation.

“This lack of emotion is very hard on both the people with Parkinson’s and their caregivers,” Mele says.

Most people don’t know they have apathy, and doctors often misdiagnose it as depression. The key difference, Mele says, is that “people with depression feel sad, and people who have apathy feel nothing.”

To emphasize these differences, Mele is creating a clinical pathway—a clinical tool including an infographic—to help health care providers recognize and diagnose apathy.

The tool will also contain information on treatment options. Information will be available both online and as a downloadable document people can print.

It’s important to distinguish apathy from depression, Mele says, because some antidepressants can worsen Parkinson’s symptoms, while others have shown some success in relieving apathy.

Other drugs used to improve memory for people with dementia may help with apathy, as may a class of medications called cholinesterase inhibitors. But people with Parkinson’s who participated in focus groups with Mele say they’d also like to explore non-drug interventions such as boxing, dance, structured walking and exercise programs.

Mele hopes that by increasing education and awareness of apathy, her work will also inspire more studies investigating treatments.

Although her grandfather died in 2017, she hopes her research will help other families like hers understand why their loved one’s personality changes with this disease. “Being aware that it’s an actual pathway in the brain that’s changing with this disease can help the family understand more,” she says.