Affecting 1.4 million Americans, Lewy Body Dementia is the second most common form of dementia, but it is still unknown to many.

By Barry Kaufman

Featured Photo Courtesy of Barry Kaufman

Lewy Body Dementia (LBD) is a complex, challenging brain disorder that affects many parts of the brain. Although less known than its “cousins” Parkinson’s and Alzheimer’s, it affects 1.4 million Americans.

Where Alzheimer’s is the most common form of dementia, it is followed by LBD and then Parkinson’s. Henry Paulson, M.D., Ph. D., University of Michigan, says: “Despite the prevalence of Lewy Body Dementia, confirming it can be challenging for doctors and patients alike.”

Dementia is a term for a decline in mental ability severe enough to interfere with daily life activity. Most people think dementia is memory-
related, but it is not always the case. Dementia can affect balance and movement, decision-making skills, language skills, visuospatial skills and attention, without affecting memory.

Susan Barber, Mayo Clinic, points out a few symptoms of LBD that a person may experience:

  • Cognitive difficulties
  • Visual hallucinations
  • Tremors and movement disorders
  • Fluctuation in day-to-day activities

If an individual has the above symptoms, her or she should see a neurologist for a neuropsychological exam.

I experienced several of the above symptoms, which led to my LBD diagnosis.

Family members noticed a stiffness in my gait and occasional tripping. Multi-tasking abilities diminished, affecting my driving and problem-solving skills.

Getting an early diagnosis isn’t easy because LBD has similar characteristics to Alzheimer’s and misdiagnosis is dangerous. The use of the medication Haldon, used in the treatment of Alzheimer’s, has resulted in the LBD patient becoming comatose.

LBD is a disease of years, not months. The average age of onset is between 50 and 80. The average duration is between 5-8 years after diagnosis. But, with early diagnosis and aggressive treatment, it is possible to extend life expectancy up to 20 years.

Caring for a person with LBD is different than caring for a person with Alzheimer’s. With Alzheimer’s, there is an expected progression. With LBD, fluctuating cognition can be frustrating for the care-giving partner not knowing “who” they are dealing with. Issues that are thought to be resolved during a “good period” may later return.

There are support groups where patient and care giver can share information and support one another. For a listing of local LBD support groups visit or contact Renee Gadwa at (734) 764-5137.

Barry Kaufman of West Bloomfield is retired from Blue Cross Blue Shield. He is an LBD patient, spokesman and has participated in LBD research with NIH and the University of Michigan.