Caregiver Corner

Caregiver Corner: Lewy What? Explaining Lewy Body Dementia

Younger and Older women

Dementia with Lewy bodies (DLB) is a common progressive brain disease that affects thinking, movement, behavior and sleep. Approximately 1.3 million Americans have Lewy body dementia, but may not be correctly diagnosed because many doctors are unfamiliar with it. Most people see multiple doctors before receiving the final diagnosis of Lewy body dementia. Their first response is often, “Lewy what?”

Symptoms and Diagnosis

Lewy body dementia is a general term and includes both Parkinson’s disease dementia (PDD) (in which Parkinson’s disease is first diagnosed but a year or more later includes dementia) and dementia with Lewy bodies (DLB) (which starts with dementia and is often misdiagnosed as Alzheimer's disease, but may include Parkinson-like symptoms at the time of diagnosis or later). LBD symptoms include dementia, visual hallucinations and frequent variations in cognitive ability, attention or alertness. There are also changes in walking or movement, as well as a sleep disorder called REM sleep behavior disorder, in which people physically act out their dreams. LBD patients may also have a severe sensitivity to medications prescribed for hallucinations.


Many LBD symptoms are highly treatable and aggressive symptom detection and treatment can improve quality of life for both the person with LBD and their caregiver. Some Alzheimer’s and Parkinson’s medications can help cognition, behavior and movement symptoms. Family caregivers are an important link in the partnership with healthcare professionals and also require significant support throughout the illness. For more information and to find support visit

Elizabeth Patrick is the Marketing and Communications Manager for the Lewy Body Dementia Association.

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