By: Grace Huff
When someone begins to see things that aren’t really there, act out their dreams at night, or struggle with changes in movement or memory, families often don’t know where to turn. These puzzling symptoms can take months or even years to piece together. For many, the answer comes at the Norman Fixel Institute for Neurological Diseases at UF Health, where a team of specialists is dedicated to connecting the clues and providing care that sees the whole person, not just the disease.
“Lewy body dementia is a complex disease, and it can be hard to put the puzzle pieces together, especially early on,” said Melissa Armstrong, MD, MSc, FAAN, who leads the Lewy Body Dementia Association (LBDA) Research Center of Excellence at the Fixel Institute. In 2018, this designation recognized the leadership and care provided by the Center. However, to the families who walked through the Institute’s doors, it represented something larger: a model of care that orbits around them with compassion and expertise. Neurologists, neuropsychologists, rehabilitation specialists, dieticians, social workers, and many more come together to form one coordinated team.
“At the Fixel Institute, our team approach to care means patients see the right specialists at the right time,” said Bhavana Patel, DO, assistant professor in the Division of Movement Disorders and Behavioral Neurology at the University of Florida and co-investigator of the Center. “All the members of this team work together on one care plan built around the person with LBD and their family.”
The holistic approach offered by the Center is essential for patients living with Lewy Body Dementia (LBD), a condition that bridges symptoms of both Alzheimer’s and Parkinson’s disease. Someone may experience muscle stiffness one day, confusion or vivid hallucinations the next, or begin acting out their dreams in their sleep, a symptom commonly known as REM sleep behavior disorder. Each of these signs tells part of the story a patient with LBD is facing, and the team at Fixel listens to them all.
The Institute’s commitment extends beyond the clinic and into homes and communities through research and outreach initiatives. A recent study, TELE-LBD, explores how Fixel’s interdisciplinary care model can be delivered virtually to those who may not be able to travel to Gainesville, Fla. Another study uses a specialized brain scan at the Institute, MEG, to help researchers better understand how LBD affects brain function. The team collaborates with other institutions across the country on studies of rapidly progressing forms of LBD as well as caregiver wellbeing.
Caregivers are at the heart of every patient’s journey; that’s why the Institute offers a virtual caregiver support group. Facilitated by Fixel social workers, this group provides a safe space for families to share their experiences, learn from one another, and find comfort in a community. “Social work is vital for finding ways to support people living with Lewy and their families,” mentioned Armstrong.
Each October, Lewy Body Dementia Awareness Month shines a light on a disease that is often misunderstood or misdiagnosed. Alzheimer’s disease may be the most common cause of dementia, but it isn’t the only one. Getting a specific diagnosis matters. It determines how symptoms are treated and what families can expect as the disease progresses. “There are many kinds of dementia, and it’s important to get a specific diagnosis,” Armstrong said.
As the team at Fixel focuses on their patients today, they are also thinking about the future. In 2025, two investigational drugs showed early promise for treating LBD, offering hope that more effective therapies are on the horizon. For Armstrong, Patel, and the rest of the LBD team at Fixel, every step forward, whether it’s a scientific discovery or a family finally feeling understood, is a part of the mission.
At the Fixel Institute, this mission comes to life every day. It’s in the way providers listen to stories that others might overlook, the way social workers hold space for families’ fears and hopes, and the way researchers turn small discoveries into possibilities. When our experts work together, when families are heard, and the patient becomes the sun, the pieces start to fit, and hope begins to take shape.
