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What Is Lewy Body Dementia

What Are The Causes And Risk Factors For Lewy Body Dementia

What is dementia with Lewy bodies?

The precise cause of LBD is unknown, but scientists are learning more about its biology and genetics. For example, they know that an accumulation of Lewy bodies is associated with a loss of certain neurons in the brain that produce two important neurotransmitters, chemicals that act as messengers between brain cells. One of these messengers, acetylcholine, is important for memory and learning. The other, dopamine, plays an important role in behavior, cognition, movement, motivation, sleep, and mood.

Scientists are also learning about risk factors for LBD. Age is considered the greatest risk factor. Most people who develop the disorder are over age 50.

Other known risk factors for LBD include the following:

Understanding Lewy Body Dementias

Lewy body dementias affect an estimated 1.4 million individuals and their families in the United States. At the Lewy Body Dementia Association , we understand that though many families are affected by this disease, few individuals and medical professionals are aware of the symptoms, diagnostic criteria, or even that LBD exists. There are important facts about Lewy body dementias that you should know if you, a loved one, or a patient you are treating may have LBD.

  • Lewy body dementias are the second most common form of degenerative dementia. The only other form of degenerative dementia that is more common than LBD is Alzheimers disease . LBD is an umbrella term for dementia associated with the presence of Lewy bodies in the brain.
  • LBD can have three common presentations: Regardless of the initial symptom, over time all three presentations of LBD will develop very similar cognitive, physical, sleep and behavioral features.
  • Some individuals will start out with a movement disorder leading to the diagnosis of Parkinsons disease and later develop dementia. This is diagnosed as Parkinsons disease dementia.
  • Another group of individuals will start out with a cognitive/memory disorder that may be mistaken for AD, but over time two or more distinctive features become apparent leading to the diagnosis of dementia with Lewy bodies .
  • Is Lewy Body Dementia An Inherited Condition

    One of the more recent discoveries toward identifying a cause of Lewy body dementia is the finding of an increasing number of gene mutations. Two genetic risk factors recently discovered are variants in the APOE and GBA genes. APOE is already known to increase the risk of developing Alzheimers disease. There is growing evidence that it also increases the risk for dementia with lewy bodies. Similarly, the GBA gene increases the risk for both Parkinsons disease and dementia with lewy bodies. Despite these findings, genetic changes as a cause of LBD are still considered rare by scientists. Most cases of Lewy body dementia are not thought to be inherited.

    Genetic testing for routine screening for LBD is not currently recommended. Discuss the pros and cons of testing with your healthcare providers if you have a family history of multiple members with Parkinsons disease and/or dementia with lewy bodies.

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    Movement Problems And Lewy Body Dementia

    Some people with LBD may not experience significant movement problems for several years. Others may have them early on. At first, movement symptoms, such as a change in handwriting, may be very mild and easily overlooked. Movement problems may include:

    • Muscle rigidity or stiffness

    Parkinsons Disease With Dementia Versus Dementia With Lewy Bodies

    What is Lewy Body Dementia??

    Some patients with Parkinsons disease experience no or only subtle cognitive decline, and their primary limitation is their motor disorder. However, other patients with Parkinsons disease develop dementia as a consequence of the disease. When dementia develops after an established motor disorder, we call the disease Parkinsons disease with dementia . In contrast, when dementia develops prior to or at the same time as the motor disorder, we call the disease DLB. Although the initial sequence of symptoms differs in PDD and DLB, as the disorders progress, the symptoms and the underlying brain changes are much more similar than they are different. As such, many researchers and clinicians think of PDD and DLB as being on a continuum of a similar disease process rather than as two distinct entities.

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    What Other Things Help

    There are various ways to help a person with DLB. Speech therapy may help improve communication between people with DLB and others. Physical therapy may help strengthen and stretch stiff muscles and help to prevent falls.

    Research has shown that;physical exercise helps to enhance brain health and improves mood and general fitness. A balanced diet, enough;sleep, and limited alcohol intake are other important ways to promote good brain health. Other illnesses that affect the brain, such as diabetes, high blood pressure, and high cholesterol, should also be treated if present.

    Is There Treatment Available

    At present there is no cure for Lewy body disease. Symptoms such as depression and disturbing hallucinations can usually be reduced by medication. However, medications to relieve hallucinations may increase muscle tremors and stiffness. Conversely, anti-Parkinson drugs may make hallucinations worse.

    Emerging evidence suggests that cholinesterase inhibitor drugs may be quite helpful for some people with this condition.

    People with this form of dementia are very sensitive to the side effects of neuroleptic drugs such as antipsychotic medications. It is essential all medications are supervised by a specialist to avoid these severe side effects.

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    How Is Lewy Body Dementia Diagnosed

    There isn’t one test that can diagnose LBD. It is important to see an experienced doctor to get a diagnosis. This would usually be specialist such as a neurologist. The doctor will

    • Do a medical history, including taking a detailed account of the symptoms. The doctor will talk to both the patient and caregivers.
    • Do physical and neurological exams
    • Do tests to rule out other conditions that could cause similar symptoms. These could include blood tests and brain imaging tests.
    • Do neuropsychological tests to evaluate memory and other cognitive functions

    LBD can be hard to diagnose, because Parkinson’s disease and Alzheimer’s disease cause similar symptoms. Scientists think that Lewy body disease might be related to these diseases, or that they sometimes happen together.

    It’s also important to know which type of LBD a person has, so the doctor can treat that type’s particular symptoms. It also helps the doctor understand how the disease will affect the person over time. The doctor makes a diagnosis based on when certain symptoms start:

    • If cognitive symptoms start within a year of movement problems, the diagnosis is dementia with Lewy bodies
    • If cognitive problems start more than a year after the movement problems, the diagnosis is Parkinson’s disease dementia

    How Can We Support The Sleep/wake Cycle Of Dlb

    What is Lewy body dementia and how is it treated?

    For people with DLB who are confused about the day-night cycle, some daily strategies can be helpful. At night, starting a lights out routine that happens at the same hour every day, where all curtains are closed and lights are turned off, can help the person understand that it is sleep time. During the day, opening the curtains, allowing patients to spend as much time in the daylight as possible, avoiding naps, and organizing stimulating activities, can be helpful. Having lots of calendars and clocks in every room might also help a person with DLB be less confused about the time of day.

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    How Does Lewy Body Disease Progress

    Lewy body disease;differs from Alzheimer’s disease in that the progression of the disease is usually more rapid. However, like Alzheimer’s disease it is a degenerative condition, eventually leading to complete dependence. Death is usually a result of another illness, such as pneumonia or an infection. The average lifespan after the onset of symptoms is about seven years.

    Who Is Affected By Lewy Body Dementia

    LBD is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. LBD is one of the most common causes of dementia, after Alzheimers disease and vascular disease.

    Dementia is a severe loss of thinking abilities that interferes with a person’s capacity to perform daily activities such as household tasks, personal care, and handling finances. Dementia has many possible causes, including stroke, tumor, depression, and vitamin deficiency, as well as disorders such as LBD, Parkinson’s, and Alzheimer’s.

    Diagnosing LBD can be challenging for a number of reasons. Early LBD symptoms are often confused with similar symptoms found in brain diseases like Alzheimer’s. Also, LBD can occur alone or along with Alzheimer’s or Parkinson’s disease.

    There are two types of LBD – dementia with Lewy bodies and Parkinson’s disease dementia. The earliest signs of these two diseases differ but reflect the same biological changes in the brain. Over time, people with dementia with Lewy bodies or Parkinson’s disease dementia may develop similar symptoms.

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    What Is Lewy Body Dementia

    On this page

    Lewy body dementia is a brain disorder that can lead to problems with thinking, movement, behavior, and mood. Visual hallucinations, or seeing things that are not there, are a common symptom, and tend;to happen early on.

    More than 1 million people in the United States are diagnosed with LBD, which is one of the most common forms of dementia. It is a progressive disease, meaning symptoms start slowly and worsen over time.

    Although younger people can have LBD, it typically begins at age 50 or older. People with LBD live on average five to eight years but may live as few as two years or as long as 20 years from the time of diagnosis to death. How fast symptoms develop and change varies depending on the persons overall health, age, and level of symptoms.

    What Is Dementia With Lewy Bodies

    Stages and Progression of Lewy Body Dementia

    Dementia with Lewy Bodies may account for 10-15 per cent;of all cases of dementia. DLB can;be diagnosed wrongly and is often;mistaken for Alzheimer’s disease.;

    DLB is sometimes known by other names.;These include Lewy body dementia, Lewy;body variant of Alzheimer’s disease, diffuse;Lewy body disease and cortical Lewy body;disease. All these terms refer to;the;same;condition.

    What a short video about dementia with Lewy bodies:

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    Dlb Parkinsons Disease And Parkinsons Disease Dementia

    DLB is closely related to Parkinsons disease. Lewy bodies also cause the damage that leads to movement problems in Parkinsons. People with Parkinsons are more likely to go on to develop dementia, which is known as Parkinsons disease dementia .

    DLB and PDD can affect people in very similar ways. If dementia symptoms appear before or at the same time as people start to have movement problems, a diagnosis of DLB is likely to be given. If movement problems are present for a year or more before signs of dementia appear, a diagnosis of PDD is likely to be given.

    What You Need To Know

    • Lewy body dementia is a form of progressive dementia that affects a persons ability to think, reason, and process information.
    • Diagnosing Lewy body dementia can be challenging; an estimated 1.4 million Americans are living with the disease.
    • LBD has three 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.
  • Interventions used in other forms of dementia may help people living with Lewy body dementia. Its important to work with a specialist familiar with the many aspects of the disease.
  • Lewy bodies are clumps of abnormal protein particles that, for reasons that are not fully understood, accumulate in the brain. These deposits cause a form of dementia called Lewy body dementia, or LBD which is what the late actor and comedian Robin Williams suffered from.

    LBD is not the same as Parkinsons, but the two are closely related: LBD causes some or all of the motor symptoms of Parkinsons. More than 1 million people in the U.S. are affected by Lewy body dementia, according to the Lewy Body Dementia Association.

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    Treating Movement Symptoms In Lewy Body Dementia

    LBD-related movement symptoms may be treated with medications used for Parkinson’s disease, called carbidopa-levodopa. These drugs can help make it easier to walk, get out of bed, and move around. However, they cannot stop or reverse the disease itself. Side effects of this medication can include hallucinations and other psychiatric or behavioral problems. Because of this risk, physicians may recommend not treating mild movement symptoms with medication. Other Parkinson’s medications are less commonly used in people with LBD due to a higher frequency of side effects.

    People with LBD may benefit from physical therapy and exercise. Talk with your doctor about what physical activities are best.

    What Causes Lewy Body Dementia

    What is Lewy Body Dementia?

    In people with LBD, abnormal clumps of a protein called alpha-synuclein accumulate in areas of the brain involved in thinking, memory, and movement. The clumps are called “Lewy bodies” after the doctor who discovered them. They build up inside neurons, or nerve cells, in the brain and cause the neurons not to work well and eventually die. Certain chemicals in the brain that act as messengers between cells are also affected. What causes these changes in the brain is not yet fully understood.

    Most cases of LBD are not inherited and rarely does more than one family member have the disease. Certain genetic variants may increase the chance of developing dementia with Lewy bodies, but having a genetic variant does not mean that a person will definitely develop the disease.

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    What Is Lewy Body Dementia Robin Williams’ Illness Explained

    Robin Williams’post-death diagnosis of Lewy body dementia unknowingly put him in the company of more than one million Americans dealing with brain changes caused by the disease.

    The star died by suicide in 2014 and his family didn’t fully understand what he was going through until the results of his autopsy.

    “I was relieved it had a name,” Susan Schneider Williams, his widow, said of the illness as she shared her husband’s story in the documentary “Robin’s Wish,” available Sept. 1 on demand and on digital platforms.

    “Robin and I had gone through this experience together, really being chased by an invisible monster. And it was like whack-a-mole with the symptoms. I left there with a name of the disease, the thing that Robin and I had been searching for.”

    The condition reportedly caused the actor to experience anxiety attacks and motor-skill problems.


    Famed DJ Casey Kasem also died in 2014 after being diagnosed with Lewy body dementia.

    Ted Turner revealed his diagnosis of Lewy body dementia in 2018. The business tycoon and cable news pioneer, now 81, said he had been feeling exhausted and forgetful.

    While Alzheimers disease is the most common form of degenerative dementia, Lewy body dementia is the second-most common form, according to the Lewy Body Dementia Association. LBD is often misdiagnosed as Alzheimers, but the two conditions have different causes and symptoms, Dr. James E. Galvin, a professor of neurology at NYU Langone Medical Center, told NBC News.

    Are There Medicines To Treat Dlb

    Though there is no cure for DLB yet, there are medications that help manage the symptoms. These medications are called cholinesterase inhibitors, and they can help if a person with DLB is having memory problems. Some examples of these medicines are donepezil, rivastigmine and galantamine. If a person with DLB has movement symptoms they may be treated with medications used for Parkinsons disease, such as levodopa. Sleep problems may be managed by sleep medications including melatonin.

    Because people with DLB are usually very sensitive to medications, any new medication, even one that is not being used for the brain, needs to be reviewed with the persons provider to avoid potential contraindication.

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    Lewy Body Dementia Medicines

    Acetylcholinesterase inhibitors;have been proven as effective medication for hallucinations, confusion and sleepiness in some people with LBD.

    Memantine;can be used by people with moderate-to-severe LBD for people that cannot take AChE inhibitors.

    Levodopa;is a drug that can help people with Lewy body dementia who struggle with their mobility. It can, however, worsen some other symptoms.

    Outlook For Dementia With Lewy Bodies

    Lewy Body Dementia Life Expectancy / Lewy body dementia ...

    How quickly dementia with Lewy bodies gets worse varies from person to person.

    Home-based help will usually be needed, and some people will eventually need care in a nursing home.

    The average survival time after diagnosis is similar to that of Alzheimer’s disease around 6 to 12 years. But this is highly variable and some people live much longer than this.

    If you or a loved one has been diagnosed with dementia, remember that you’re not alone. The NHS and social services, as well as voluntary organisations, can provide advice and support for you and your family.

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    Managing The Effects Of Dementia With Lewy Bodies

    A person with dementia with Lewy bodies might:

    • have recurring visual hallucinations see things that are not there
    • experience disturbed sleep known as Rapid Eye Movement sleep disorder, in which people are restless and can experience intense dreams/nightmares
    • experience sudden changes and fluctuations in alertness people may stare blankly into space for periods of time, seem drowsy and lethargic and spend a lot of time sleeping
    • have slowed movement, difficulty walking, shuffling or appear rigid
    • experience tremors usually in the hands whilst at rest
    • have problems with balance and be prone to falls
    • bladder and bowel problems
    • difficulties with swallowing

    Memory is often less affected than with other types of dementia but people may be at more risk of mood and behaviour changes such as apathy, anxiety, depression, delusions and paranoia. One type of delusion, known as Capgras syndrome, in which the person believes that a friend or relation has been replaced by an imposter can be particularly difficult for families. Other symptoms may include changes in blood pressure, body temperature and impaired sense of smell.


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