What Is Lewy Body Dementia? Symptoms and Risk Factors for the Disease That Affected Robin Williams
A neurologist reveals how LBD progresses and what you can do to stay healthy
While Alzheimer’s disease is the most common type of dementia, there’s another variation that is also relatively prevalent. Lewy body dementia (LBD) affects more than 1 million people in the US. It is also the disease the late actor Robin Williams is believed to have had when he died. Here, Meredith Bock, MD, board-certified neurologist and the Chief Medical Officer at Remo Health, shares more details about the disorder, its symptoms and risk factors.
What is Lewy body dementia?
Like most variations of dementia, LBD is a complex neurodegenerative disorder, and the exact causes are not yet completely understood. It’s characterized by an abnormal protein that accumulates in the brain known as alpha-synuclein, explains Dr. Bock.
“Lewy body dementia can be caused by a condition called ‘dementia with Lewy bodies’ (DLB), where a certain protein builds up in parts of the brain that affect thinking and mood. It then progresses to the areas of the brain involved in movement,” she says. These protein clumps are called “Lewy bodies” after the doctor who found them, Fritz Jakob Heinrich Lewy.
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“It can also be caused by Parkinson’s disease, where the Lewy bodies build up in parts of the brain that affect movement first and then progress to areas affecting memory and thinking,” she adds.
Lewy body dementia symptoms
The symptoms of lewy body dementia can affect nearly every system in the body and can vary significantly from one person to the next, Dr. Bock says. The most common signs, though, are shifts in mood, memory and thinking and movement.
The changes in movement associated with LBD are known as “parkinsonism” and tend to involve tremors, muscle rigidity and slowed walking with a shuffling gait, she explains.
Mood changes are also common, and a person with LBD will often feel sad, moody, anxious or have paranoid thoughts, Dr. Bock adds. Visual hallucinations may occur, too, and many patients see faces in patterns, animals scurrying, shadows or have the feeling that someone else is in the room when no one is there.
“Additionally, people might struggle more with memory and thinking, finding it harder to follow directions, multitask or drive,” Dr. Bock says. “Another subtle but important symptom is a loss of smell or taste, which can make food less appealing and lead to weight loss.”
Finally, dream enactment behavior can be a symptom of Lewy body dementia. This is when a person acts out their dreams while they sleep, like punching the air, making running motions with their legs or yelling, Dr. Bock explains.
How LBD progresses
Unfortunately, Lewy body dementia gets worse over time. In the early stage of dementia with Lewy bodies, symptoms are often subtle and might be hard to pinpoint, Dr. Bock says. This can include difficulty with attention and executive function, mild memory problems (especially with recent events) and changes in mood such as depression or apathy. Cognitive abilities can fluctuate throughout the day.
“As dementia with Lewy bodies progresses to the middle stage, cognitive problems become more pronounced, affecting daily activities more significantly,” she explains. “People may struggle with planning and problem-solving, experience confusion and disorientation and have language difficulties such as trouble finding words or understanding speech. Motor symptoms, similar to those seen in Parkinson’s disease, become more prominent, including slowed movement, stiffness and rigidity, tremors, and balance problems that can lead to falls.”
Behavioral and psychiatric symptoms also tend to intensify at this stage, with increased hallucinations and delusions, agitation and anxiety and persistent issues with depression and apathy.
In the late stage of dementia with Lewy bodies, cognitive decline is severe, leading to significant impairment in all cognitive facets, Dr. Bock says. Communication becomes very challenging, and the person may lose the ability to speak effectively or understand others. They may also have difficulty recognizing familiar people.
This is usually the time when people living with LBD require comprehensive support and care to ensure their safety and comfort.
What increases your risk of lewy body dementia?
While some factors that raise the risk of LBD are inherent, others are modifiable with lifestyle strategies.
Your genetics
If you have a close relative, such as a parent or sibling, who has been diagnosed with LBD, you may be at a higher risk of developing the disease than someone without a family history of the condition, Dr. Bock says. “This familial connection highlights the importance of being aware of your family’s medical history and discussing any concerns with your doctor.”
Underlying health conditions
Cardiovascular health can significantly influence the risk of developing any cognitive disorder, Dr. Bock cautions. Chronic conditions like high cholesterol, high blood pressure and diabetes can damage the network of blood vessels in the brain, which are essential for delivering oxygen and nutrients to brain cells.
Environmental factors
Exposure to pesticides and certain chemicals, such as trichloroethylene (TCE), has also been linked to an increased risk of Parkinson’s disease and LBD, Dr. Bock says.
How to reduce your risk of lewy body dementia
To reduce these risks, managing any potential health conditions is crucial. Dr. Bock recommends regular monitoring of your blood pressure and implementing stress-reduction techniques such as relaxation exercises if your levels are elevated. She also suggests reducing your salt intake to help manage blood pressure.
“Regular exercise is very important for overall cardiovascular health,” Dr. Bock notes. “If your blood pressure remains high despite these efforts, discuss medication options with your doctor.”
She advises aiming for a systolic (top number) blood pressure of 130 mm Hg or less, especially if you are middle-aged. Your doctor may adjust this goal as you age to better align with your individual health needs.
Managing pre-diabetes or diabetes is another priority. Talk to your doctor to create a personalized plan that includes lifestyle changes like adopting a healthier diet and increasing physical activity, Dr. Bock offers.
“These changes can often be enough to control blood sugar levels, but if they are not sufficient, your doctor can recommend medication options to help,” she says.
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