Lewy Body Dementia

Little people. Children. Small furry animals. Intruders in the house. These are some of the common visual hallucinations that persons diagnosed with dementia with Lewy Bodies (DLB) experience during the course of this very unpredictable disease.



Slow and rigid movements, staring spells or blank looks, incoherent thinking, excessive daytime sleepiness, and loss of balance may also be indications of DLB.

“This is the most common disease you never heard of, and yet the second most common form of degenerative dementia after Alzheimer’s,” remarked neurologist Dr. James E. Galvin, professor and associate dean for clinical research at the Charles E. Schmidt College of Medicine. Dr. Galvin is also a professor at the Christine E. Lynn College of Nursing, Florida Atlantic University. I had the privilege to hear Dr. Galvin’s presentations on DLB at two recent local conferences. While I had heard of this form of dementia, I had no idea of its symptoms and the difficulties associated with getting accurate diagnoses. I feel compelled to share with you what I learned at these conferences, in the likelihood that your loved one may exhibit symptoms of DLB. Few individuals and medical professionals are even aware that DLB exists. Your family practitioner is likely one of these.

Lewy Body Dementia affects about 1.4 million people in the US. It is not rare, but is often mistaken for Alzheimer’s Disease (AD) or Parkinson’s because it has symptoms of both these conditions. It is more common in men, typically begins at age 50 or older, and is a more rapidly progressive disease than AD.

A German neurologist, Dr. Friedrich Lewy, working in Vienna in 1912, discovered abnormal protein deposits in people with Parkinson’s disease. These deposits are now called “Lewy  bodies.” They are spherical reddish structures, abnormal clumps of protein called alpha-synuclein that develop inside nerve cells. In a healthy brain, this protein plays important roles in neurons, especially at synapses where brain cells communicate with each other. In DLB, the protein forms clumps inside neurons, “gum up” these nerve cells, and thus cause the cells to die.

Slide of a Lewy Body

Slide of a Lewy Body

Lewy Body Dementia is an umbrella term for two related clinical diagnoses, and shows itself in three possible ways:

  • Some individuals start with a movement disorder that is diagnosed as Parkinson’s disease and later develop dementia. This is called Parkinson’s Disease Dementia (PDD).
  • Other individuals start with cognitive/memory problems that might be mistaken for Alzheimer’s. However, over time they develop two or more features that distinguish it as dementia with Lewy bodies (DLB).
  • A third small group of individuals present with hallucinations, behavioral problems, and difficulty with complex mental activities.

Over time, all of these individuals will develop very similar cognitive, physical, sleep, and behavioral difficulties.

According to the Lewy Body Dementia Association, the symptoms can include:

  • Impaired thinking, such as loss of planning and processing information, memory, or the ability to understand visual information.
  • Fluctuations in cognition, attention or alertness. Some days the person will be doing well; other days they will be unresponsive or seem near death.
  • Problems with movement including tremors, stiffness, slowness, shuffling gait, repeated falls, and difficulty walking.
  • Visual hallucinations.
  • Sleep disorders, REM behavior disorder, such as acting out one’s dreams while asleep, shouting and grunting.
  • Behavioral and mood symptoms, including depression, apathy, anxiety, agitation, delusions, or paranoia.
  • Changes in autonomic body functions, such as blood pressure control, temperature regulation, and bladder and bowel function.

Dr. Galvin told conference participants that there is often a delay to diagnose and treat this form of dementia because it is commonly misdiagnosed as a late-onset psychiatric disorder. It is common for the person experiencing DLB symptoms to see three to four doctors before a diagnosis is obtained. An early and accurate diagnosis is critical and essential because DLB patients are extremely sensitive to certain drugs that can make their symptoms worse. Antipsychotic medications can increase the risk of death in elderly persons with DLB. While there are no medications approved yet to treat DLB, Dr. Galvin noted that there are medications approved to offer symptomatic benefits for cognitive, movement, and behavioral problems.

Dr. Galvin was instrumental in developing and testing a tool that helps detect DLB. It is called the “Quick Dementia Rating System.” It is a 10-item questionnaire available to download free and fill out at home. It takes about 3 – 5 minutes to complete. Each of the ten items has five possible answers increasing in severity of symptoms. You choose one answer that best fits each category to get a composite risk score. Scores range from 0 to 10, with higher scores representing greater cognitive impairment.

If you suspect that a loved one may have DLB, download this questionnaire below. Then take the test with the score to your family doctor or a neurologist. Extensive testing will likely be needed before a definite diagnosis can be made, but this can initiate that process.

Dr. Galvin is hopeful that a cure is on the way in the near future. Please check out the resources I note below, especially the website of the Lewy Body Dementia Association and their videos. My hope is that more individuals can be diagnosed early on to benefit from a longer quality of life.

May you find peace, patience, and joy in your caregiving journey today and every day!

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Download the “Quick Dementia Rating System Questionnaire” here: http://med.fau.edu/research/The%20Quick%20Dementia%20Rating%20System%20Instructions%20and%20Form.pdf.

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For a booklet about DLB information, go to: https://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia/introduction.

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For resources, videos, and caregiver information, check out the Lewy Body Dementia Association, go to: https://www.lbda.org/.

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Watch a five-minute presentation from Professor Ian McKeith, President, of the Lewy Body Society UK: https://youtu.be/6lw1WscrIvY.

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