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Dementia with Lewy Bodies (DLB)

What is dementia with Lewy bodies?

Dementia with Lewy bodies (DLB) is a form of progressive dementia caused by degeneration of the tissues in the brain.

More than a million people in the U.S. are affected by DLB, according to the Lewy Body Dementia Association.

People with DLB have a buildup of abnormal protein particles called Lewy bodies in their brain tissue. Lewy bodies are also found in the brain tissue of people with Parkinson disease (PD) and Alzheimer disease (AD). However, in these conditions, the Lewy bodies are generally found in different parts of the brain.

The presence of Lewy bodies in DLB, PD, and AD suggests a connection among these conditions. But scientists haven’t yet figured out what the connection is.

DLB affects a person’s ability to think, reason, and process information. It can also affect personality and memory. DLB becomes more prevalent with age, and typically first presents when a person is in his or her 60s and 70s.  DLB is progressive, which means it continues to develop over time. There are several types of dementia with different causes.

What causes dementia with Lewy bodies?

Dementia with Lewy bodies (DLB) is caused by degeneration or deterioration of brain tissue. DLB may be genetic, but it is not always clear why someone develops DLB. Lewy bodies in the brain affect substances called neurotransmitters. A neurotransmitter is a chemical that helps to transmit signals from one nerve cell to another.

One type of neurotransmitter is dopamine, which helps transmit signals that cause muscle movement. Lewy bodies interfere with the production of dopamine. A lack of dopamine causes movement problems, such as those seen in  Parkinson disease.

Acetylcholine is another type of neurotransmitter found in the parts of the brain responsible for memory, thinking, and processing information. When Lewy bodies build up in these areas, they use up the acetylcholine, causing symptoms of dementia.

What are the symptoms of dementia with Lewy bodies?

According to the National Institute of Neurological Disorders and Stroke, dementia with Lewy bodies (DLB) has 3 features that distinguish it from other forms of dementia:

  • Fluctuating effects on mental functioning, particularly alertness and attention, which may resemble delirium
  • Recurrent visual hallucinations
  • Parkinson-like movement symptoms, such as rigidity and lack of spontaneous movement

In DLB, memory problems often occur later in the progression of the disease.

DLB can be confused with other forms of dementia, but it also has unique features, such as hallucinations and delirium.

The primary sign of DLB is a progressive decline in cognitive functions, such as memory, thinking, and problem-solving. The decline in cognitive function is enough to affect the ability to work and perform normal daily activities. Although memory may be affected, it isn’t usually as impaired as in someone with Alzheimer disease.

DLB is generally diagnosed when at least 2 of the following features are also present with dementia:

  • Fluctuations in attention and alertness. These fluctuations may last for hours or days. Signs of these fluctuations include staring into space, lethargy, drowsiness, and disorganized speech. These fluctuations have been referred to as “pseudo delirium” because they are a lot like delirium.
  • Visual hallucinations. These hallucinations recur and are very detailed. While the hallucinations may be upsetting to someone observing them, they generally don’t bother the person having them. Many people with DLB have detailed visual hallucinations.
  • Movement symptoms consistent with Parkinson disease (PD). Such movement symptoms include slow movement, shuffling gait, rigidity, and falls. Tremors may also be present, but not as pronounced as in a person with PD with dementia.

Additional signs and symptoms seen in DLB include:

  • Depression
  • Sleep disorder that affects REM sleep, causing vivid dreams with body movement
  • Dizziness, feeling lightheaded, fainting, or falling
  • Urinary incontinence

The symptoms of DLB may resemble other conditions. Always see a health care provider for a diagnosis.

How is dementia with Lewy bodies diagnosed?

The only definite way to diagnose dementia with Lewy bodies (DLB) is by doing an autopsy – there are tests that show the presence of Lewy bodies. So, DLB is diagnosed based on medical history, a physical exam, and symptoms.

In addition to a complete medical history and physical exam, the health care provider may order some of the following:

  • Blood tests. These are to rule out conditions such as vitamin B12 deficiency and hypothyroidism (a lack of thyroid hormones).
  • Computed tomography (CT) scan. This imaging test uses X-rays to create pictures of cross-sections of the brain.

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  • Electroencephalogram (EEG). An EEG measures the electrical activity of the brain.
  • Magnetic resonance imaging (MRI). This imaging test uses a large magnet and radio waves to look at organs and structures inside your body. MRIs are very useful for examining the brain.
  • Positron emission tomography (PET). PET may detect biochemical changes in an organ or tissue that can show the onset of a disease process before physical changes related to the disease can be seen with other imaging tests.
  • Neuropsychological assessments. These tests assess mental functioning and include attention span, memory, language and math skills, and problem-solving skills.
  • Psychiatric evaluation. This may be done to rule out a psychiatric condition that may resemble dementia.

How is dementia with Lewy bodies treated?

Dementia with Lewy bodies (DLB) has no cure. Treatment for DLB involves addressing the symptoms.

Medications used to treat Alzheimer disease (AD) and Parkinson disease (PD) are often used to treat DLB. Other treatments, such as supportive care, physical therapy, psychotherapy, and behavioral interventions, may be used, too.

It’s important that the health care provider treating DLB is familiar with all aspects of the disease, because other specialists are often involved. Because DLB shares features with AD and PD, those features will need to be treated. Many people with DLB, however, can’t tolerate some of the medications for AD or PD. Caution must be used when prescribing certain medications for DLB.

Living with dementia with Lewy bodies

Interventions used in other forms of dementia may also help people living with dementia with Lewy bodies (DLB). These include using glasses or hearing aids as needed, educating the patient and family, providing a structured environment, and teaching behavioral interventions. The interventions depend on the specific needs of each patient and his or her caregivers. Needed interventions will change over time as the disease progresses.

Hallucinations may be managed by simply ignoring them and educating the caregiver(s) about them. Improving lighting and keeping the patient around other people also helps.

It’s important to work with a health care provider familiar with DLB and the many aspects of the disease. Other specialists are often involved, too.

When should I call my health care provider?

If you are diagnosed with FTD, you and your caregivers should talk with your health care providers about when to call them. Your health care providers will likely advise calling if your symptoms become worse, or if you have obvious and/or sudden changes in behavior, personality, or speech. This includes mood changes, such as increasing depression or feeling suicidal.

Key points

  • Dementia with Lewy bodies (DLB) is a form of progressive dementia that affects a person’s ability to think, reason, and process information.
  • DLB is caused by degeneration or deterioration of brain tissue.
  • DLB has 3 features that distinguish it from other forms of dementia:
    • Fluctuating effects on mental functioning, particularly alertness and attention, which may resemble delirium
    • Recurrent visual hallucinations
    • Parkinson-like movement symptoms, such as rigidity and lack of spontaneous movement
  • DLB is diagnosed based on medical history, a physical exam, and symptoms.
  • There is no cure for DLB. Treatment involves addressing the symptoms.
  • Interventions used in other forms of dementia may help people living with DLB.
  • It’s important to work with a health care provider familiar with DLB and the many aspects of the disease.

Next steps

Tips to help you get the most from a visit to your health care provider:

  • Before your visit, write down questions you want answered.
  • Bring someone with you to help you ask questions and remember what your provider tells you.
  • At the visit, write down the names of new medicines, treatments, or tests, and any new instructions your provider gives you.
  • If you have a follow-up appointment, write down the date, time, and purpose for that visit.
  • Know how you can contact your provider if you have questions.
Online Medical Reviewer: Stump-Sufliff, Kim, RN, MSN, AOCNS
Online Medical Reviewer: Zeigler, Olivia-Walton, MS, PA-C
Date Last Reviewed: 1/14/2014
© 2000-2016 The StayWell Company, LLC. 780 Township Line Road, Yardley, PA 19067. All rights reserved. This information is not intended as a substitute for professional medical care. Always follow your healthcare professional's instructions.