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Lewy body dementia (LBD) is characterized by the presence of Lewy bodies in the brain. Lewy bodies are abnormal protein clumps that accumulate in the brain's nerve cells, leading to cognitive decline that worsens over time. LBD has two forms: dementia with Lewy bodies and Parkinson's disease dementia. These two forms of dementia are different but related.

Symptoms can include visual hallucinations, non-visual hallucinations, changes in attention, concentration, wakefulness, and alertness, and severe loss of thinking ability. There is no cure for LBD, though there are some ways to manage symptoms.

Difficulty concentrating

LBD can cause unpredictable changes in alertness, attention, and concentration from day to day. Sometimes, changes can occur throughout the day. These symptoms can help distinguish LBS from Alzheimer's disease.

The Early Signs and Symptoms of Lewy Body Dementia

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Memory loss

Unlike Alzheimer's disease, when memory problems are evident early on, with LBD, memory problems may not be apparent at first but often appear as the disease progresses. People with LBD may also experience confusion about time and place, difficulty with numbers and language, and poor judgment.

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Confusion and hallucinations

People with LBD may also experience confusion, including hallucinations. Visual hallucinations are common in people with LBD, and they may occur early on. These hallucinations are typically realistic and detailed. Hallucinations in the other senses are also possible, but the visual type is more likely. Hallucinations may not require treatment unless they are frightening or lead to dangerous behavior.

The Early Signs and Symptoms of Lewy Body Dementia

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Changes in movement

In Parkinson's disease, movement symptoms can begin more than a year before cognitive symptoms. Tremors in the hands and feet are a common symptom and more common when at rest. Symptoms can also include muscle stiffness, slowed movement, and shuffling when walking.

The Early Signs and Symptoms of Lewy Body Dementia

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Sleep disruptions

Sleep disorders are common in people with LBD, but they may be underdiagnosed. People with LBD can experience various sleep-related disorders, including insomnia, REM sleep behavior disorder, restless leg syndrome, and excessive daytime sleepiness. A lack of sleep can also contribute to issues with focus and concentration and difficulty concentrating.

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Rapid changes in symptoms

Symptoms of LBD can fluctuate with time and vary from person to person. People with LBD can see a large variation in symptoms, and their time of onset can vary drastically. For some people, symptoms changes in thinking speed, visual perception, understanding, and judgment can remain constant, but for others, they can come and go. Ultimately, though, LBD is a progressive disease, and symptoms will slowly worsen over time. How fast symptoms develop and change varies from person to person.

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Loss of balance and movement issues

LBD can cause movement problems, though some people may not experience them for years after the onset of the disease and others may not experience them at all. Movement changes may be very mild at first and can be easily overlooked. They may include:

  • Slow movements
  • Muscle stiffness or rigidity
  • Frozen stance
  • Shuffling
  • Shaking or tremor
  • Balance problems
  • Falls
  • Loss of coordination
  • Stooped posture
  • Reduced facial expressions
  • Weak voice
  • Swallowing problems
  • Smaller handwriting than usual

The Early Signs and Symptoms of Lewy Body Dementia

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Sensitivity to medication

Managing hallucinations in people with LBD can be challenging as people with LBD often have severe reactions to antipsychotic medication. In fact, research has found that 81 percent of people with DBL who received antipsychotics had adverse reactions, half of which were severe. These reactions can include sedation, worsening cognitive symptoms, and movement problems, which can trigger neuroleptic malignant syndrome, a rare but life-threatening reaction to these medications.

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Mood changes and psychological effects

LBD can also have multiple psychological effects that may worsen as the person's cognitive abilities decline. Some of these changes may include agitation, anxiety, apathy, delusions, depression, or paranoia. Behavioral changes may include:

  • Trouble sleeping
  • Inability to enjoy activities
  • Asking the same questions over and over about a situation
  • Being fearful when a loved one is not present
  • Pacing
  • Hand wringing
  • Constantly repeating words and phrases

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Risk factors for Lewy Body Dementia

Scientists are still learning about the risk factors for LBD. The most significant risk factor is age. Most people who develop LBD are over age 50, and it is more common in men. Some health conditions seemed to be linked to a higher risk of developing LBD, including loss of smell and REM sleep behavior disorder.

Having a family member with LBD may be a risk factor, but scientists do not consider it a hereditary disease, and there is no genetic testing available to determine whether someone will get LBD.

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Diagnosis and treatment

There is no precise test to diagnose LBD accurately. A thorough workup can be used to reach a diagnosis or rule out other conditions. Doctors will get a detailed history and perform an examination, including tests of mental function. Blood tests and imaging studies may be done to rule out other causes of dementia, and sleep evaluations can determine if REM sleep behavior disorder is present. There is also a Lewy body composite risk score comprising ten questions about various symptoms that can help determine a diagnosis.

LBD is usually managed with a combination of medications to treat cognitive symptoms, movement symptoms, and hallucinations. People with LBD may also find support groups, psychotherapy, speech, occupational, or physical therapy helpful in improving their quality of life.

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Preventing Lewy Body Dementia

There is no way to prevent LBD. Seeking treatment when symptoms appear and working with a skilled care team may help keep symptoms manageable for extended periods and improve the quality of life for people with this condition.

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Management tips

Here are some management tips for people with LBD and their caregivers.

LBD can affect the part of the nervous system that regulates digestion, elimination, and blood pressure. People with LBD may experience orthostatic hypotension, which is a sudden drop in blood pressure when standing too quickly. Orthostatic hypertension can result in dizziness and fainting. There are some ways to prevent this from happening, including rising to a standing position slowly, wearing compression socks, and elevating the legs when sitting or lying down. Constipation can be managed with fluid intake, diet, exercise, stool softeners, and laxatives when needed.

Keeping active may help people with LBD retain their abilities for longer, as can eating healthy, not smoking, getting enough sleep, and avoiding alcohol.

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Living with Lewy Body Dementia

Coping with an LBD diagnosis can be challenging, but there are some things you can do to make it easier to manage day-to-day. It can help to build a support system by letting friends and family know about your diagnosis and how it affects your mood, movements, and behavior. As the disease progresses, you may have trouble managing daily tasks, like driving or taking medication. Having a support system of people who understand your condition early can make it easier to ask for help.

Because of changes in movement and thinking, LBD can lead to safety issues. To help manage these, consider carrying a medical alert card or wearing a medical alert bracelet. Address any safety issues in your home, including fall risks, like poor lighting, floor lamps, or stairs. Installing grab bars in the bathroom or adding ramps can help avoid falls.

Plan for your care. LBD is a progressive disease, so talk to your friends, family, and doctors early about the care you would like to receive in the future. If you are working, talk to a legal or financial expert to help plan for your disability or retirement. LBD will affect your ability to work over time, so it is important to plan early. Talk to a lawyer to write or update a will and designate power of attorney. Taking care of these things soon after your diagnosis can be better so you do not have to worry about them later.

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Key Takeaways

LBD is a form of dementia caused by abnormal protein clumps in the brain. There is no cure, and symptoms get progressively worse over time. Getting an early diagnosis can ensure treatment begins as soon as possible and give people with this condition the time they need to plan ahead for the future of their care.

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This site offers information designed for educational purposes only. You should not rely on any information on this site as a substitute for professional medical advice, diagnosis, treatment, or as a substitute for, professional counseling care, advice, diagnosis, or treatment. If you have any concerns or questions about your health, you should always consult with a physician or other healthcare professional.