What is Lewy body dementia?

Professor of Neurology at the Miller School of Medicine of the University of Miami and director of the Levy Body Dementia Research Center of Excellence, Drs. James Galvin said, “It’s the most common disease you’ve never heard of.”

Dementia is a disorder of mental processes that is impaired due to memory disorders, personality changes and brain disease or injury.

Lewy body dementia is associated with the accumulation of a protein called alpha-synuclein, which “accumulates and accumulates inside cells and some classic areas in the brain,” said Dr. Ford Vaux, medical director of the Disorders Consciousness Program at Shepherd. Center in Atlanta and a contributor for CNN. Parkinson’s disease dementia, other Levi’s body dementia begins as a movement disorder, but progresses to include dementia and mood and behavioral changes.
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When functioning properly, alpha-synuclein – which is usually present in small amounts in the brain and in the heart, muscle, and other tissues – may play a role in regulating neurotransmitters. But when this protein gathers mass (called a levy body) within the brain, the consequences are severe.

The most common symptoms of LBD include impaired thinking, attention fluctuations, problems with movement, visual hallucinations, sleep disorders, behavioral and mood issues, and changes in bodily functions such as the ability to control urination.

Over time, people with LBD “layer upon layer … lose the life you’ve created,” said Angela Taylor, senior director of research and advocacy at the Levy Body Dementia Association.

The same happened to Williams, who diagnosed Parkinson’s disease in 2013. Until his widow Susan Schneider Williams discovers that he actually has LBD. The film describes how the disease devastated Williams’ health.
“My husband was unknowingly battling a deadly disease,” said Schneider Williams in the documentary’s trailer. “Almost every area of ​​his brain was under attack. He felt himself disintegrating.”
CNN founder Ted Turner is also battling the disease, as he revealed in a 2018 interview.

Experiences of dysfunction and ambiguity are common in many patients and their families. What exactly is the disease here, why is it difficult to identify and how does it harm people’s lives.

An elusive and insidious disease

The first published cases of Lewy body dementia occurred in the mid-1960s, but it took two decades for the disorder to be recognized by medical researchers.

“In the 1980s, as molecular understanding of Alzheimer’s improved, it became clear that a group of these people did not seem fit (the diagnosis),” Galvin said.

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For example, patients with LBD had visual hallucinations when most Alzheimer’s patients did not. He also had more Parkinsonism – signs and symptoms of Parkinson’s disease, including slowness, stiffness, tremor, and imbalance compared to Alzheimer’s patients.

“It wasn’t until the mid-’90s, when a large group of people (dementia with Lewy body consortium) got together and coined the phrase ‘dementia with levy bodies’ and started writing diagnostic criteria that could be applied. Was, “added Galvin. “And it really changed the game because once you have the criteria, people can be better classified.”

Williams & # 39;  Autopsy revealed a widely distributed presence of levy bodies in his brain.

In addition to the association with levee bodies – abnormal accumulation of the protein alpha-synuclein in the brain – the exact cause of LBD is unknown.

Possible, but rare, genetic factors include high levels of mutation of certain enzymes and a family gene that can predispose someone to the disease.

Sorting through symptoms

Some patients exhibit movement disorders that doctors first diagnose as Parkinson’s disease. If those patients later develop dementia, they will be diagnosed with Parkinson’s disease dementia.

Others may start with cognitive or memory disorders mistaken for Alzheimer’s disease. More specific changes in their cognitive function over time can lead to “dementia with Lewy bodies”.

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Rarely do some individuals show neuropacitric symptoms earlier, which may include hallucinations, behavioral problems, and difficulty with mental activities. When they appear together, it may indicate an early diagnosis of LBD.

Vox said, to specifically and accurately diagnose someone with LBD, doctors have to ask the right questions about his symptoms.

For Alzheimer’s patients delusions can occur late in the illness and become ill, manifesting as paranoia or mistrust – as if a spouse is cheating. For LBD patients, confusion occurs first and there are well-made mistakes, such as seeing a loved one and thinking that he or she has been replaced by a similar eunuch.

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“The more detailed the evaluation,” Galvin said, the easier it is to separate the terms. ”

Vox said that because Levi body protein cannot be tested like Alzheimer’s protein, cases of LBD are often diagnosed during hospitalization. Taylor said the diagnosis can occur when the family requests an autopsy to gain more context for a skeptic or to donate a brain for research.

Changing mental, cognitive and physical health

Taylor said that symptoms may hinder a person’s ability to work. They can then impede their ability to drive; Management of their affairs and health; Be socially active; Dress yourself; And bath. A person may also be unable to control involuntary behavior, Galvin said, resulting in constipation, bleeding, low blood pressure or inability to control urinary or bowel movements.

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The inability of a person to visually perceive spatial relations of objects can lead to car accidents or injuries. People with LBD may experience anxiety, depression, and REM sleep disorder – in which people lose muscle paralysis that normally occurs during sleep and physically (and sometimes violently) to fulfill their dreams Is for After a person is finally diagnosed, the life expectancy is about four to five years, Vox said.

“They are losing slowly over time,” Taylor said. “This is a journey that is very difficult.”

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Research is underway to improve diagnosis and treatment, but currently there are no treatments for Lewy body dementia. Most patients are treated with medications for Alzheimer’s or Parkinson’s disease, as the symptoms of LBD are similar. However, treating the various symptoms of LBD with no medication appropriate to the condition can be a “real art” and quickly fill a patient’s medicine cabinet, Vox said.

He said, “You have to weigh the cost-benefits of treating this medicine, or get the dual effect of this medicine and even a little bit.” ”

New challenge for patients and families

Levi body dementia can be a painful experience for both patients and their families.

Galvin said getting a diagnosis can be a matter of months to years “doctor shopping”.

Executive dysfunction can lead to behaviors that family members initially see as bad decisions. Confusions can frustrate and frighten them.

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“As a carer, I think one of the challenges is recognizing that we cannot use the same skills and interpersonal dynamics that we came to rely on our relationship with the person with LBD, “Taylor said.

“We have to develop new people because you can’t argue with someone who has hallucinations or delusions. Sometimes you have to step more into their reality and without sympathy (and) offering help. To learn a new way they are feeling. Behaved like a child. ”

Levi live with body disease

It is possible that the same healthy diet, sleep, and exercise routines that have been found to reduce the symptoms of Alzheimer’s and Parkinson’s diseases may also help people with LBD.

“Therefore, exercise is also very important in Lewy body dementia,” Taylor said, “because it is biologically related to Parkinson’s disease and shares a lot of similar symptoms.”

For patients and families in need of support and guidance, the Levy Body Dementia Association is equipped with such resources.

“No one should face LBD alone,” Taylor sasid. “Not a person with LBD and not a family caregiver. This disease doesn’t really make anything easier in life. And they shouldn’t pass without any guide and support.”


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