Dear Colleagues,
Our health system is home to experts who treat a multitude of conditions. Some of these conditions are well known among the public, with a wealth of resources available for patients and loved ones. Other conditions, such as Lewy body dementia, are less well known and resources can be limited.
Lewy body dementia affects about 1 million people a year and causes problems with thinking, movement, behavior and mood. We recently hosted Amy Greenwood and Rebecca Highland, sisters who created the Larry Gross Lewy Body Awareness Foundation in honor of their late father who was diagnosed with the condition.
The sisters shared their experiences navigating misdiagnoses and a general lack of understanding of the condition among medical providers. In their words, Lewy body dementia is like “having schizophrenia, bipolar disorder and paranoid delusional behavior, all wrapped into one.”
As the sisters said in their presentation, diagnosing Lewy body and living with Lewy body are two different worlds. “It’s not, are you familiar with Lewy body, but instead, have you spent time with anyone with Lewy body?” The sisters found that while their caregivers may have had an intellectual knowledge of the condition, few had a personal experience caring for someone with Lewy body dementia.
Joel Shenker, MD, PhD, associate professor of clinical neurology, shared an informative presentation with our faculty, residents and social workers about the condition. Through the foundation, the sisters help patients and their loved ones stay one step ahead of Lewy body. But it’s a two-fold purpose — educating patients and also educating caregivers.
Based on their experience, Amy and Rebecca created care packages for patients and loved ones. These care packages include resources to understand the condition — in layman’s terms — and advice on how to advocate for loved ones. The presentation underscored that while the medical care we provide within the walls of our health system is vital to patients and their loved ones, the support they receive outside of our walls and in their communities cannot be understated.
I thoroughly enjoyed the opportunity to learn from Rebecca and Amy and hear their journey as daughters of a father who had Lewy body disease. It was a great reminder of the responsibility we have as caregivers to provide information and care in the most meaningful way for our patients in each and every interaction we have. I would encourage you to learn more about the Larry Gross Lewy Body Awareness Foundation and take a few moments to watch their presentation.
Sincerely,
Rick Barohn, MD
Executive Vice Chancellor for Health Affairs and Hugh E. and Sarah D. Stephenson Dean, School of Medicine
rbarohn@health.missouri.edu
