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The Villages
Friday, February 23, 2024

New support group in The Villages for disease that tormented Robin Williams

Lewy body dementia is a progressive brain disorder that affects thinking, movement, behavior, and mood.  It is a type of dementia caused by abnormal protein deposits in the brain, called Lewy bodies. It is characterized by cognitive decline, motor symptoms, and non-motor symptoms such as depression and anxiety. It is the second most common type of dementia after Alzheimer’s disease, affecting more than 1.4 million Americans.

In 2014, the world lost a beloved actor and comedian, Robin Williams, to LBD. His passing brought much-needed attention to the disease and the importance of mental health. Before his diagnosis, Williams had been experiencing paranoia, confusion, insomnia, constipation, and a loss of smell. These symptoms are not all related to brain function, which makes LBD difficult to diagnose.

LBD is often misdiagnosed as Parkinson’s disease or Alzheimer’s disease. However, it is important to note that LBD has unique symptoms that distinguish it from other neurodegenerative diseases. These symptoms can include (but are not limited to) visual hallucinations, fluctuating cognition, movement disorders, poor regulation of body functions, and REM sleep behavior disorder.

Diagnosing LBD is a complex process that requires expert neurological review. There is no single test that can diagnose LBD, but doctors diagnose patients based on their symptoms and sometimes with the help of brain scans, which can provide some useful hints but aren’t definitive. Tests might include neurological and physical exams, blood tests, brain scans, and sleep evaluation.

Caregivers and those with LBD need to consider being in an LBD support group. These types of support groups provide valuable and trusted resources and information for LBD families. They can help caregivers and those with LBD to cope with the disease and greatly improve their quality of life.

As The Villages continues to make progress in becoming a “Dementia Forward-First” community, a new support group is starting that will assist those with LBD and their caregivers!  The LBD Support Group is free and will be held at Charter Research in The Villages (1025 Lake Sumter Landing) on the first Wednesday of each month from 3 to 4:30 p.m. starting on Feb. 7. To register, call Sue at 914-589-2004.  The support group will be facilitated by experts from The Central Florida Lewy Body organization.    

These support groups are meant to be attended by both the caregiver and the individual with LBD.  The group starts as one unified group and then breaks out into two separate groups (those who are caregivers and those who have LBD).

Carol Ann Wolf, MSH-NHA-CDP is a Village of Hemingway resident.  She is a retired healthcare executive who volunteers in a variety of different areas within The Villages relating to dementia.

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