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What is Lewy Body disease?
Lewy Body Disease is comprised of a spectrum of diseases involving an array of dementia and motor symptoms. The disease is commonly referred to by a number of names, such as Lewy Body Disease, Lewy Body dementia, dementia with Lewy Bodies, or diffuse Lewy Body Disease.
Identifying Lewy Body Disease can be challenging if one is unfamiliar with its pathology, because the dementia is similar to that of Alzheimer's, while many symptoms appear to mimic Parkinson's. However, there are notable distinguishing characteristics. Unlike people with Alzheimer's or Parkinson's disease, patients with LBD exhibit:
- strong psychotic symptoms (hallucinations)
- extreme sensitivity to antipsychotic medications
- day-to-day symptom variability.
In addition, Lewy Body Disease is twice as common in men as in women (Alzheimer's occurs equally in both genders) and is rarely genetically linked.
What are Lewy Bodies?
Lewy Bodies are abnormal structures in the mid-brain: microscopic protein deposits found in nerve cells that disrupt the brain's normal functioning, causing it to slowly deteriorate. They were first discovered in 1912 by Frederick Lewy, a colleague of Alois Alzheimer (for whom Alzheimer's disease is named).
While the presence of Lewy bodies in the mid-brain has long been recognized as the hallmark of Parkinson's disease, in the 1960s Lewy Bodies were discovered in the cortex (the brain's outer layer) of people with dementia.
People with Lewy Body Disease have Lewy Bodies in both the mid-brain and cortex. Lewy Body Disease patients often have the plaque characteristic of Alzheimer's disease, while people with Alzheimer's may also have cortical Lewy Bodies. This overlap leads to frequent misdiagnosis.
Signs and symptoms of Lewy Body Disease
Many of the symptoms of Lewy Body Disease bear a striking resemblance to Alzheimer's or Parkinson's. However, a physician familiar with LBD will be alert to the following signs that the illness is in fact Lewy Body Disease:
- Mental decline: reduced alertness and lowered attention span
- Recurrent visual hallucinations, usually related to people or animals. These hallucinations occur in 80% of LBD patients, often at night
- Poor response to antipsychotic medications known as neuroleptics, which are usually given to people with mental health problems. In the case of a Lewy Body Disease patient, however, this class of drugs may actually amplify rigidity and confusion, and can even cause sudden death
- Increasing problems handling the tasks of daily living
- Repeated falls
- Sleep disturbances, including insomnia and acting out dreams
- Delusions or depression
- Fluctuations in autonomic processes, including blood pressure, body temperature, urinary difficulties, constipation, and difficulty swallowing.
Parkinson’s, Alzheimer’s and Lewy Body Disease
Since Lewy Body Disease is commonly misdiagnosed for both Parkinson’s and Alzheimer’s, it is helpful to understand how these diseases overlap.
| Overlapping Symptoms of Parkinson’s, Alzheimer’s, and Lewy Body Disease | |
| Parkinson’s and Lewy Body Disease | Alzheimer’s and Lewy Body Disease |
Some of the motor symptoms found in both Parkinson’s and Lewy Body Disease's patients include:
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Some of the cognitive symptoms found in both Alzheimer's and Lewy Body's patients include:
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Diagnosis and treatment of Lewy Body Disease
How is LBD diagnosed?
Since the Lewy Bodies themselves can only be identified by autopsy, an accurate diagnosis relies heavily on physician awareness of the defining characteristics of the disease. A brain scan can detect mental deterioration, but not the actual Lewy Bodies.
A thorough medical history that focuses on the pattern of symptoms and looks particularly for the hallucinations and sleep disturbances that are common to LBD patients is the optimal route for diagnosis, once other possible conditions have been ruled out.
What is the treatment for someone with Lewy Body Disease?
Being diagnosed with an incurable illness, especially one that involves dementia can be an overwhelming experience. Because the treatment for Lewy Body Disease focuses primarily on symptom management, it's helpful to take as proactive an approach as possible from the outset. This means working with your physician to control your symptoms and make lifestyle changes to accommodate the effects of the disease.
Proactive ways to manage Lewy Body Disease:
…Become informed. Learn as much as you can about Lewy Body Disease and how it is likely to affect you specifically, given your health history, age, and lifestyle.
…Strengthen your senses. Have your doctor evaluate each of your five senses — sound, vision, touch, taste and smell — in order to identify and treat any abnormalities. Then ask about exercises to improve them. By challenging yourself to enhance your sense of sight, hearing, touch, taste and smell, you'll boost both your mental and physical capabilities.
…Manage symptoms with behavioral changes. One example of symptom management in LBD involves low blood pressure (hypotension), a common Lewy Body Disease symptom that can lead to falls. To help stabilize your blood pressure and minimize the risk of fall-related injuries, be sure to stay well hydrated, exercise, get adequate sodium (salt) in your diet, avoid prolonged bed rest, and stand up slowly.
…Choose medications wisely. The potential benefits of any medication need to be carefully balanced with possible side effects that may occur. In people with Lewy Body Disease, the treatments for hallucinations, delusions and behavioral disturbance tend to make the Parkinson's symptoms worse; and treating the Parkinson’s symptoms can make the delusions and behavior problems worse. However, depression and sleep disorders can and should be treated with medications that the patient can safely tolerate.
Lewy Body Disease: current research
The National Institute of Neurological Disorders and Stroke (NINDS), a division of the National Institutes of Health, conducts and supports research on a wide array of dementia-related diseases, including dementia with Lewy Bodies. The goal is to learn more about diagnosis, treatment, and prevention of LBD. Researchers are also exploring the Lewy Bodies themselves, in an effort to understand the mechanisms of disease formation and progression.
Currently there are two Lewy Body Disease clinical trials that are recruiting participants. The first focuses on enhancing care coordination from hospital to home for both patients and caregivers; the second aims to discover whether systematic care for the caregivers of dementia patients is in fact the most effective approach. To learn more about these trials, visit the ClinicalTrials.gov website.
To Learn More: Related Helpguide Articles
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Related links for Lewy Body Disease
What Lewy Body Disease Is – Useful overview of the illness, symptoms and treatment by a family whose mother was diagnosed with Lewy Body Disease in 1999. Includes a detailed journal chronicling the patient's decline and the care provided by the family. Site also includes stories of other families and patients. (LewyBodyJournal.org)
NINDS Dementia With Lewy Bodies Information Page – Definitions, treatments, research, and links to Alzheimer's Disease organizations. Includes a link to studies accepting patients. (National Institute of Neurological Disorders and Stroke) Lewy Body Dementia (PDF) – 2-page brochure highlighting the risk factors, diagnosis, prognosis, symptoms and treatment for Lewy Body Disease. Includes phone number for caregiver support: 1-800-LEWYSOS or 1-800-539-9767. (LewyBodyDementia.org)
LBD Information – Links to numerous useful articles covering the spectrum of bodily functions affected by Lewy Body Disease, including sleep disturbances, vision problems, psychiatric symptoms and autonomic dysfunction. Also includes articles comparing and contrasting LBD with Parkinson's Disease and other dementias. (Lewy Body Dementia Association Inc.)
Facts About Dementia (UK) – Information on what Lewy Bodies are, signs, symptoms and treatments for Dementia with Lewy Bodies. (Alzheimer's Society)
