Dementia with Lewy Bodies

For many people, dementia with Lewy Bodies isn’t a condition that’s well known until a relative or friend is diagnosed with it. Dementia itself impacts the way a person thinks, reasons, and processes information. It impacts the memory, personality, and quality of life of those with it. All forms of dementia will progressively impact a person’s abilities. Dementia with Lewy Bodies (DLB) is a form that causes degeneration of the brain tissue. It is the most common form of dementia that does this.

What Is Dementia with Lewy Bodies?

Dementia with Lewy Bodies (DLB) is a somewhat common form of dementia. It is estimated that 1.3 million Americans suffer from this form of dementia, though this may be a low estimate, according to the Lewy Body Dementia Association. After Alzheimer’s disease, dementia with Lewy Bodies is the most common.

The term Lewy Bodies refer to a specific type of protein deposit that builds up on the nerve cells in a person’s brain. This build-up occurs in areas where motor control, memory, and thinking is done. It’s known to cause mental ability to decline, which can result in symptoms that include Parkinson’s disease-like symptoms as well as hallucinations.

There are three elements that distinguish DLB from other forms of dementia, according to the National Institute of Neurological Disorders and Stroke. They include:

  • Fluctuating mental function, especially in areas of attention and alertness, which can create instances of delirium
  • Parkinson-like movement problems, such as spontaneous movement and rigid muscles
  • Recurring visual hallucinations

What Are the Symptoms of Dementia with Lewy Bodies?

There are a wide range of symptoms associated with DLB. Among them are:


Generally, this is one of the first symptoms people experience. Over time, hallucinations s begin to be more common. People may initially see shapes or odd figures. As the disease progresses, they may develop hallucinations involving other people, feelings of touch, hearing things, or smelling things that are not there.

Changes in Movement

It’s common to see slowed movement in people with DLB, including shuffling instead of walking, tremors in muscles, and rigid muscles. These can sometimes be mistaken for Parkinson’s disease.

Cognitive Decline

A person with DLB will develop the inability to process information and will have trouble thinking. They also develop a poor attention span, confusion and memory loss. Some will also have problems with visual-spatial concepts.

Autonomic Nervous System Problems

Things like the body’s blood pressure, sweating, and pulse are hard to keep under control. Sometimes, the digestive system does not work properly, causing bowel problems or pain. In other cases, low blood pressure can lead to dizziness and falls.

Sleep Problems

Because of the impact on the nervous system, DLB can also cause trouble with sleep patterns. A person may not sleep fully, or, in some cases, they may seem to be acting out their dreams while asleep. This is due to rapid eye movement behavior change.

Other symptoms of DLB include depression, difficulty staying awake, staring off into space, and apathy. Many people battle emotional disturbances as a result of the changes in their body that they cannot control.

What Are the Stages of Dementia with Lewy Bodies?

As a progressive condition, people with dementia with Lewy bodies will move through a worsening of their disease. The rate of progression depends on many factors, including the type of treatment that is made available to the individual and when. However, DLB does not progress in the same way as other forms of dementia, including Alzheimer’s disease.

Early Stages: During the first stages, a person may develop hallucinations. They may have other types of reality distortion as well, such as delusions, acting out dreams during their sleep, and restlessness. Many will develop a situation where they seem to just freeze and are unable to move for a few moments. During this early stage, those who have DLB do not usually have memory problems. They also generally do not have anything more than mild cognitive decline. Some people may have instances of urinary urgency and incontinence.

Middle Stages: At this point, an individual will exhibit more Parkinson’s-like symptoms. They may have trouble controlling their body or may fall often. Some people experience speech impairment and will start to struggle with situations such as paranoia, delusions and increasing hallucinations. They may also begin to show more signs of cognitive impairment, such as having trouble paying attention or having periods of increasing confusion.

Late Stages: In the last stages of DLB, a person will have significant muscle rigidity and seem to feel pain when touched. Many times, they will need help with day-to-day tasks such as grooming and hygiene. The person may have trouble speaking or will no longer speak at all. Many times, they become susceptible to other forms of disease and infections, which can ultimately lead to death.

What Are the Causes of Dementia with Lewy Bodies?

The underlying cause of dementia is hard to pinpoint in any form, though genetics may be a component of it. However, in DLB, we know that there is a significant buildup of proteins called Lewy bodies that occurs. When this develops in the brain, it makes it difficult for individuals to communicate because the brain does not function as it should. Many times, plaques and tangles commonly associated with dementia also develop in those who have DLB.

What Are the Risk Factors for Developing Dementia with Lewy Bodies?

Anyone can develop this condition. However, it is most common in people who are over the age of 60. The older you are, the more likely you are to develop dementia with Lewy Bodies. DLB also tends to impact men more often than women, though both sexes can suffer from this condition.

Other risk factors are linked to family and medical history. People with a family member who has this form of dementia are at a higher risk of developing DLB.

What Is the Diagnosis Process for Dementia with Lewy Bodies?

There is no specific test that can diagnose dementia with Dewy Bodies. The only way to get a definitive diagnosis is through an autopsy.

However, doctors, family members and friends can all begin the diagnosis process of someone as soon as they notice the person has any symptoms of the disease. Doctors can then make a tentative diagnosis after doing a physical exam, evaluating a person’s medical history, and gathering insight from blood work, PET scans, and neuropsychological assessments. Most often, doctors will also conduct a psychiatric evaluation to determine if there are any key factors associated with this condition.

Other tests may include a CT scan, EEG, or MRI. A CT scan shows images of the body that have abnormal metabolic activity, allowing doctors to look for changes in the brain. Similarly, an EEG can be used to measure electrical impulses in the brain, showing areas of the brain with poor electrical makeup. An MRI can also provide helpful information as it shows a “slice” of the brain’s and body’s tissues. It can help show any abnormalities in these areas.

Once doctors have made a tentative diagnosis, treatment and memory care from trained professionals can begin.

What Are the Treatment Options for Dementia with Lewy Bodies?

There is no cure for DLB, like with all forms of dementia; however, doctors can help individuals and relatives handle the condition. The primary goal is to slow the progression of DLB. This may be accomplished with medications as well as through cognitive support. In addition to this, doctors can also prescribe medications such as Sinemet and Cholinesterase inhibitors to treat some of the symptoms a person has. These medications can help individuals manage the disease and improve their quality of life.

Most doctors will also recommend additional help to slow the progression and ensure a higher quality of life for a longer period. Treatment may also help provide more support to a person during his or her lifetime. For example, they may benefit from supportive care, behavioral interventions, and physical therapy.

One key concern with patients who have this form of dementia is receiving an accurate diagnosis and treatment.. Alzheimer’s medications are rarely beneficial and can have a negative impact on a person with DLB. Parkinson’s disease medications are also ineffective for many people with DLB. For this reason, those who think their relative or friend may have this particular form of dementia should seek out a specialist familiar with treating it. Specialists have the experience necessary to improve the diagnosis and ensure that individuals are given the proper treatment, limiting the chances that individuals will be given ineffective or even negative treatment regimes.

What Type of Care Do Those with Dementia with Lewy Bodies Need?

Because of the progressive nature of DLB, it is likely that this condition will worsen. There’s no way to know how long a person will spend in each stage of the condition; however, at any point, they may need supportive care. This may include constantly having someone nearby to help with muscle problems, cognitive limitations, and hallucinations. In some situations, a patient may also need help with activities of daily living, such as grooming and hygiene.

During the first stage, individuals may be able to remain at home; however, as the condition progresses, they may become more dependent on the help of others to get through the day’s tasks and need memory care support. This is especially common in the second stage, when an individual begins to experience increasing amounts of cognitive decline. In this situation, a supportive, but understanding environment can become valuable. The amount of care a person needs depends on his or her symptoms. Yet, most people will require significant help over time.

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