Barbara Fradkin – FLORIDA TODAY

Q:  My husband was just diagnosed with Lewy Body Dementia. Can you help me understand this?

A:  I am sorry about this recent diagnosis. Lewy Body Dementia (LBD) is a complex and challenging brain disorder. LBD affects many parts of the brain in ways that scientists are trying to understand more fully. Its various symptoms may present themselves at different times and include cognitive decline, problems with movement, visual hallucinations, sleep disorders, behavioral changes, changes in blood pressure, temperature regulation, bladder and bowel function and more.

My colleague, Deidra Schubert, works for Merritt Island Medical Research. She told me that, according to the Lewy Body Dementia Association, “It takes an average of three doctors and more than 18 months to correctly diagnose LBD. Many doctors fail to recognize the signs and symptoms of LBD because they are very similar to Alzheimer’s disease and Parkinson’s disease, leading to misdiagnosis and delayed treatment.”

Alzheimer’s disease starts with an abnormal build-up of certain proteins in the brain. A different protein is responsible for Lewy Bodies. They are made of alpha-synuclein, which plays an important role in neuron function in the healthy brain. In LBD, alpha-synuclein forms into clumps inside neurons, starting in the areas of the brain that control aspects of memory and movement. The neurons work less efficiently and eventually die.

Dementia with Lewy bodies causes cognitive decline that may at first seem like Alzheimer’s disease. Over time, however, patients will develop the other distinctive symptoms of dementia with Lewy bodies. Parkinson’s disease starts as a movement disorder, with symptoms such as slowed movement, muscle stiffness, tremor, and a shuffling walk. Later, cognitive symptoms of dementia and changes in mood and behavior may arise. It is important to note that not all people with Parkinson’s disease develop dementia.

Dr. Lourdes Benes is a movement disorder specialist with Neurology One in Orlando. She sees many patients with Lewy body dementia, Parkinson’s disease and Alzheimer’s disease. She states, “early detection of Lewy Body disease is crucial because it allows for early intervention and management to improve quality of life.”

Sue Bouder from Central Florida Lewy Body works with people with Lewy Body disease and Parkinson’s disease. She believes that LBD poses unique challenges for healthcare professionals and caregivers and that understanding the diseases is key.

These professionals will be my guests on November 8th when the Brevard Parkinson’s Alliance presents a free “Lunch and Learn” LBD event at One Senior Place. Seating is limited, so RSVP online or call 321-751-6771 today to register. I’ll see you there.

One Senior Place is a marketplace for resources and provider of information, advice, care and on-site services for seniors and their families. Questions for this column are answered by professionals in nursing, social work, care management and in-home care. Send questions to, call 321-751-6771 or visit The Experts in Aging at

Barbara Fradkin is the Co-president of the Brevard Parkinson’s Alliance, a Social Worker, Certified Care Manager and the former Director of One Senior Place, Viera.