By Todd Taylor
The Fixel Center for Neurological Diseases at UF Health has garnered national recognition as a newly named Lewy Body Dementia Association Research Center of Excellence.
The award, announced April 3, recognizes centers nationwide with distinguished experts in the diagnosis and management of Lewy body dementia, or LBD, and creates a network of research centers committed to the advancement of safer and more effective therapies for those living with the disease. The Fixel Center is among only 24 centers nationwide honored with the designation.
Melissa Armstrong, M.D., M.Sc., director of the Mangurian Clinical-Research Center for Lewy Body and Parkinson’s Disease Dementia at the Fixel Center, said the center of excellence designation will allow her team to collaborate with other centers across the country to share strategies for the early detection and diagnosis of LBD.
“Research shows that patients see an average of three physicians before diagnosis and finding the right diagnosis can take years,” said Armstrong, an assistant professor in the UF College of Medicine’s department of neurology and a member of the Evelyn F. and William L. McKnight Brain Institute of the University of Florida. “It can be a long and winding path before these patients get the correct diagnosis.”
LBD is a progressive brain disorder that presents with a variety of physical, cognitive and behavioral symptoms, including memory and thinking changes, trouble concentrating, slowed movements, walking difficulties and sleep disruption. LBD is an umbrella term for two related conditions: dementia with Lewy bodies, when dementia sets in prior to or at the same time as Parkinson’s symptoms; and Parkinson’s disease dementia, when dementia develops in a person who has had Parkinson’s disease for years.
There is no cure for LBD, and although it’s the second-most-common form of dementia, it is frequently misdiagnosed or unrecognized.
Ray Kassar, who died at age 89 from dementia with Lewy bodies in 2017, was among many who struggled to find answers before diagnosis.
“Believe it or not, the diagnosis came as a great relief to us,” said David Ferguson, Kassar’s husband. “Ray didn’t have to spend his final year going from doctor to doctor looking for a phantom cure with all of the invasive testing that would have entailed. We finally knew what we were dealing with. A weight had been lifted and we felt like we could put our energies into living day-to-day and to take advantage of every moment we had left together.”
Ferguson said they had visited numerous doctors as they attempted to make sense out of certain symptoms before finally being referred to Armstrong by Kassar’s primary physician.
“Frankly, we thought he was crazy sending us to Gainesville — we knew nothing about the city and had been conditioned to expect that the best medical care was only to be found in larger urban centers like New York,” Ferguson said. “But I can’t describe the confidence we felt the moment we arrived. We knew we were in the right place. Dr. Armstrong delivered the message of Ray’s diagnosis with such honesty, directness and clarity. We came to think of her as Ray’s primary physician as all of the symptoms now were brought under the Lewy body umbrella. The entire staff and diagnostic process was amazing. And they coordinated his care protocol seamlessly with his general practitioner.”
Inspired by the care Kassar received at UF, Ferguson and Kassar founded the Raymond E. Kassar Research Fund for Lewy Body Dementia at the University of Florida.
The Lewy Body Dementia Association Research Center of Excellence designation will provide Armstrong and her team with more resources to fulfill their mission of improving LBD education, expanding research and providing patients with high-quality, interdisciplinary care, which includes physical and occupational therapy, speech and language therapy, social work and neurological testing.
“We need to improve education for the community and physicians about the symptoms, find better ways to work with pharmaceutical companies to develop new treatments and design and perform research studies to help those living with this disease,” Armstrong said.
To learn more about LBD, read Dr. Armstrong’s article in The Conversation titled “Knowing the signs of Lewy body dementia” at bit.ly/2yh5IXo.
Visit prn.to/2EhcTOb to read the LBDA’s news release about the designation.