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Support & Insight for the Autumn of Life

Avoid Losing 18 Crucial Months in Diagnosing Lewy Body Dementia

Lewy Body Dementia (LBD) affects over a million Americans. Yet it is often mistaken for Alzheimer’s or Parkinson’s. People typically go through 18 months and 3 doctors till they get the correct diagnosis. Learn what you can do about it.

ATLANTA — Lewy body dementia (LBD) is the most misdiagnosed form of dementia, taking on average more than 18 months and three doctors to receive a correct diagnosis. Even though it is second only to Alzheimer’s disease as the most common cause of progressive dementia, affecting 1.3 million Americans, the symptoms of LBD are not well recognized by many physicians, especially primary care physicians and other general practitioners. Unfortunately, then, most people are not diagnosed until they are at moderate or severe states, leaving their caregivers unprepared and the patient vulnerable to potentially deadly medication side effects.

“Recognizing LBD at its earliest stage is critical not only for an accurate diagnosis by the appropriate specialist but also because it is important for a patient with LBD to be managed by an expert familiar with dementia in general and LBD in particular,” says Howard I. Hurtig, M.D., Chair Emeritus, Department of Neurology, Pennsylvania Hospital, and Elliott Professor of Neurology, Perelman School of Medicine, University of Pennsylvania. “A primary care physician with the best intentions may not be well informed about LBD, so it becomes the duty of the patient and caregiver to know about resources, such as the Lewy Body Dementia Association (LBDA), for help when needed.”

About Lewy Body Dementia

Lewy body dementia (LBD) is characterized by an abnormal build-up of Lewy bodies (alpha-synuclein protein deposits) in the areas of the brain that regulate behavior, memory, movement and personality. Sometimes the disease presents symptoms similar to Parkinson’s or Alzheimer’s, hence the frequent misdiagnosis. The most prominent symptoms of Parkinson’s disease affect motor abilities. Alzheimer’s disease primarily affects areas of the brain involving learning and memory. What complicates diagnosis is that some people may have changes in the brain from more than one memory disorder. Most often a specialist like a neurologist or geriatric psychiatrist will distinguish symptoms to achieve an accurate diagnosis, sometimes with the help of a neuropsychologist, who plays an important role in understanding cognitive problems.

While the symptoms of LBD may be similar to Alzheimer’s and Parkinson’s disease, the treatment strategy is more challenging because fewer medications can be used safely. People with LBD have medication sensitivities, and an early and accurate diagnosis can protect them from receiving medications that can worsen their symptoms, cause severe side effects or trigger a potentially deadly reaction. Hurtig warns, “The avoidance of medications that can worsen the symptoms of LBD cannot be overemphasized. Every patient with LBD and their caregiver(s) should memorize the list of acceptable and forbidden drugs.”

Support for Healthcare Providers and Families

Because symptoms of LBD closely resemble both Alzheimer’s and Parkinson’s disease, creating a diagnostic dilemma for doctors, the Lewy Body Dementia Association offers resources to help people with this challenging disease. Both experts and concerned families can download an LBD Diagnostic Symptoms Checklist to facilitate their discussion.


Caregivers for those suffering from LBD need extra support, as the needs of the patient are unique compared to Alzheimer’s and Parkinson’s disease. To receive a packet of information or to access other resources about LBD, visit

About Lewy Body Dementia Association

The Lewy Body Dementia Association is a 501(c)(3) national nonprofit health organization dedicated to raising awareness of Lewy body dementia, promoting scientific advances, and supporting people with LBD, their families and caregivers. LBD, a complex disease that can present with a range of physical, cognitive, and behavioral symptoms, is a “family disease.” It dramatically affects not only the person diagnosed but also the primary caregiver. LBDA supports all those affected by Lewy body dementias through outreach, education and research. To learn more about LBD and LBDA, please visit

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B. Berger

B. Berger

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This site was inspired by my Mom’s autoimmune dementia.

It is a place where we separate out the wheat from the chaffe, the important articles & videos from each week’s river of news. With a new post on Alzheimer’s or dementia appearing on the internet every 7 minutes, the site’s focus on the best information has been a help to many over the past 15 years. Thanks to our many subscribers for your supportive feedback.

The site is dedicated to all those preserving the dignity of the community of people living with dementia.

Peter Berger, Editor


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