Shedding Light on Lewy Body Disease

Doctors Moussa and Pagan stand in a hallway
Charbel Moussa, MBBS, PhD (pictured left), and Fernando Pagan, MD, are working to better understand and treat Lewy body dementia.

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(May 30, 2019) — Though many people are familiar with Parkinson’s and Alzheimer’s diseases, fewer have heard of Lewy body dementia, a neurodegenerative disorder with similar symptoms.

“I think more awareness needs to be out there because Lewy body disease is probably just as prevalent as Parkinson’s,” said Fernando Pagan, MD (M’96), professor of neurology at Georgetown University School of Medicine and director of the MedStar Georgetown University Hospital Movement Disorders Clinic.

There is no cure for Lewy body dementia but current treatments can alleviate patients’ symptoms, and researchers are set to launch three clinical trials this year to study new therapeutic treatments for the disease at Georgetown University Medical Center, a Lewy Body Dementia Association Research Center of Excellence.

“In the past, there’s been more despair when you hear this diagnosis, but there are things we can do,” said Pagan. “We’re here to help individuals who have this disorder. We can provide symptomatic treatments today, but hopefully tomorrow we’ll have disease modifying agents.”

‘No Typical Presentation’

A hybrid of symptoms associated with Parkinson’s and Alzheimer’s diseases, Lewy body dementia causes both movement symptoms, including tremor, rigidity and difficulty balancing, as well as memory impairment.

“The typical presentation is really that there is no typical presentation,” Pagan said. “Some patients are going to come in because of a movement problem and some patients are going to present because of a cognitive problem.”

Unlike Parkinson’s or Alzheimer’s disease, Lewy body dementia progresses quickly and is associated with visual hallucinations and psychiatric issues, such as depression, anxiety and psychosis. Additionally, patients with Lewy body dementia frequently experience cognitive fluctuations, a distinguishing feature of the disease.

“You can have a period of minutes to hours in a day with a person who is completely lucid and then all of a sudden, the person does not remember who you are or what was going on, so it can be extremely distressing to the family,” Pagan said. “Those fluctuations are something that’s very unique to Lewy body disease.”

It is critical to connect newly diagnosed Lewy body dementia patients with social workers and rehabilitation services because the disease imposes a significant burden on caregivers, said Yasar Torres-Yaghi, MD, director of the Parkinsonism and Dementia Clinic at MedStar Georgetown and assistant professor of medicine at Georgetown University School of Medicine.

“Providing support for patients that have a high degree of symptom burden is very, very important and can lead to better outcomes down the road, so that people don’t feel overburdened and caregiver burden doesn’t become a major issue,” he said.

Patients Frequently Misdiagnosed

Because the symptoms of Lewy body dementia overlap with those of Parkinson’s and Alzheimer’s diseases, patients are often misdiagnosed. “One of the most common things that we see is somebody coming in for a re-evaluation for memory problems but their previous physician missed the motor aspects of it,” Pagan said. “So we’ve seen some patients come from very well-renowned dementia clinics or Alzheimer’s disease specialists but they totally missed the movement issues.”

For every 10 patients with dementia at the Parkinsonism and Dementia Clinic, Torres-Yaghi estimated that three to four have Lewy body dementia.  

“If you misdiagnose someone or you’re unable to diagnose them with Lewy body disease and you’re calling it dementia NOS [not otherwise specified], then you’re missing a whole aspect of care,” Torres-Yaghi said. “There’s a lot of other medications you could be providing these patients.”

However, diagnosing patients who have Lewy body dementia can be challenging and time-consuming.

“Oftentimes, you have to be more like a detective and really evaluate the patient as a whole entire individual, and by the end of your hour, hour and a half with that patient, it becomes evident that they’re having not only motor aspects, but non-motor aspects with cognitive problems and maybe even hallucinations,” Pagan said. “If you just spend five minutes with a patient, it’s very easy to miss that diagnosis.”

Research Offers Hope

Pagan stressed that existing drugs can alleviate the cognitive, movement and psychiatric symptoms in patients with Lewy body dementia.

“We have treatments that can help with the memory impairment. There are treatments that can help with the motor symptoms,” Pagan said. “So there are a lot of things that we can do to help the individual and the family to make life better for that individual.”

With expertise in neurodegenerative disease including Lewy body dementia as well as Parkinson’s, Alzheimer’s and Huntington’s diseases, researchers at Georgetown are in a unique position to conduct translational research, identifying and repurposing existing drugs in the lab that can then be tested in patients.  

“We’re actually doing true translational work,” Pagan said. “We’re currently doing trials studying repurposed drugs for Parkinson’s and Alzheimer’s, but Lewy body disease is a perfect disorder to use these drugs as well.”

Georgetown’s translational research is led by Charbel Moussa, MBBS, PhD, director of the Laboratory for Dementia and Parkinsonism, and scientific and clinical research director of the Translational Neurotherapeutics Program at Georgetown University Medical Center.

For the last several years, Moussa and his colleagues have focused on repurposing cancer drugs such as nilotinib and bosutinib as potential neurotherapeutics, both now approved by the U.S. Food and Drug Administration to treat forms of leukemia.  

This spring, the translational research team launched a clinical trial with bosutinib, the only known drug currently being studied to treat Lewy body dementia.

“The first clinical step in studying bosutinib in Lewy body dementia is to carefully examine if the drug is safe and if it is tolerable, and we’ll do that in this trial,” says Pagan, principal investigator of the study. “We’ll also look to see if they can change the levels of the abnormal proteins and dopamine in the blood and spinal fluid.”  

“I believe that we’re on the frontier of finding new therapies for all of our conditions within movement disorders,” Torres-Yaghi said. “I think as a doctor that focuses on Lewy body dementia, it is very, very satisfying to be able to help people.”

Kat Zambon
GUMC Communications

Patients seeking information about the bosutinib study can contact Joy Arellano at Additional information can be found at

The FDA has approved an “investigation new drug” (IND) application submitted by Georgetown to study bosutinib. Georgetown University has a granted patent in Australia and pending patent applications in U.S. and other foreign jurisdictions on the use of bosutinib to treat alpha-synucleopathies. Moussa, a co-investigator on the study, is named as the inventor on the patent.