What is Lewy Body Dementia?

Two years out of medical school, German-born neurologist Dr. Frederic Lewy discovered little abnormal proteins in the brains of deceased Parkinson’s patients. That was 1910. Researchers later named them Lewy Bodies, and more recently, have found that their locations in the brain determine symptoms and diagnoses. If, for example, the Lewy Bodies are in the substantia negra, the part of the brain that controls movement, then the patient has Parkinson’s disease. If they are in the cerebral cortex, the part of the brain that controls cognitive functioning, then they call it Lewy Body Dementia, or Dementia with Lewy Bodies. Other locations have other names and symptoms. Lewy Bodies block the dopamine receptors in the brain, disrupting messages sent from the brain to the muscles, causing all sorts of problems.

Patients with LBD, or Dementia with Lewy Bodies, experience many of the physical symptoms of Parkinson’s disease, such as muscle rigidity, slowness and balance problems, and also the loss of cognitive executive function, like with Alzheimer’s Disease. Often, LBD is initially diagnosed as Parkinson’s or Alzheimer’s.

Lewy Body Dementia is not a memory loss dementia, per se, although it can certainly look that way. Patients with LBD generally have hallucinations and visual-spacial problems, which makes them see things that are not there (and then possibly remember things the way they experienced them). Other symptoms may include bouncing blood pressure and fainting spells, muscle weakness, small handwriting, REM sleep disorder, incontinence, and emotional issues such as depression or anxiety.

LBD progresses faster than Parkinson’s or Alzheimer’s, sometimes two to seven years from diagnosis to death.

 

Resources

Grayboys, Thomas, MD Life in the Balance

http://www.tomgraboys.com/

Lewy Body Dementia Association

https://www.lbda.org/

Michael J. Fox Foundation

https://www.michaeljfox.org/

National Institute on Aging: Caregiving

https://www.nia.nih.gov/health/how-care-person-lewy-body-dementia

“The terrorist inside my husband’s brain,” by Susan Schneider Williams (Robin Williams’ widow)

https://n.neurology.org/content/87/13/1308

Whitworth, Helen Buell. A Caregiver’s Guide to Lewy Body Dementia.

In 2016, the trajectory of my life changed course when I quit my teaching job to become my husband’s caregiver. When he died of Lewy Body Dementia 18 months later, I took off looking for healing.