What is Lewy Body Dementia? Causes, Symptoms, and Treatments

What is Lewy Body Dementia? Causes, Symptoms, and Treatments

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Lewy Body Dementia Progression

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Lewy body dementia (LBD) is a type of progressive disease that has affected more than a million Americans, according to the Lewy Body Dementia Association. Over time, it destroys brain cells and can be life-threatening if the symptoms go untreated.  

If you have seen a person with LBD, you would know that they start forgetting things and often lose track of what they were doing. Then after a while, their movements or motor abilities will also take a hit. As a result, they experience frequent falls, sleeping problems, mood swings, and similar symptoms. 

Lewy body dementia often gets linked with multiple mental disorders because of the overlapping symptoms. However, LBD can exist alone or with other brain diseases and may need separate care and treatment plans. Many dementia patients with Lewy bodies might require moving to a nursing home or memory care facility. 

So, how can you recognize it? And how to get help if you or a loved one has been diagnosed with LBD? 

What is Lewy Body Dementia? 

Lewy body dementia is a disorder that affects the brain, leading to problems with thinking, moving, and overall mental ability. The disease can result from an excessive release of alpha-synuclein protein in the brain. These protein deposits are called Lewy bodies and are believed to be one of the root causes of dementia. 

The Lewy body protein deposit, the leading cause of LBD disorder, has been linked to the diagnosis of Parkinson’s disease and Alzheimer’s. LBD is the most common form of dementia after Alzheimer’s. Therefore, many memory care patients who get admitted with dementia symptoms later may get diagnosed with LBD. 

LBD develops over time and starts creeping up as time passes by. There are different stages of Lewy body dementia and often require a comprehensive treatment approach. LBD has a wide variety of symptoms, including changes in mood, problems with movement and balance, visual hallucinations, and cognitive decline. 

What Causes Lewy Body Dementia? 

The actual cause of Lew body dementia is still unknown, and research is ongoing to figure out its origin and genetics. However, it is known that Lewy bodies cause certain neuron and chemical loss that enable brain cells to communicate. One of those chemicals is acetylcholine, essential for memory and learning. The other one, dopamine, is a crucial component for cognition, movement, and behavior issues. So, the loss of these chemicals causes an imbalance in the brain and overall body function. 

There are some risk factors associated with LBD, and among them, age is a significant concern. Older adults aged 60 or more are at higher risk of developing the disease than younger ones. Also, gender can play a role since men are at a greater risk of having LBD than women. Besides, people who have Parkinson’s disease or LBD in their family history may have potential risks too. 

Symptoms of Lewy Body Dementia 

There are several signs and symptoms of Lewy Body Dementia. It is crucial to recognize those at an early stage so that they can be treated and controlled. Here are some of the symptoms of LBD: 

    • Hallucinations: Visual hallucination is one of the early signs of Lewy body dementia. People with LBD might see things that are not there. However, these hallucinations are not always visual. They might hallucinate different sounds, touch, or smell as well. 
    • Movement problems: Lewy body disease causes mobility issues such as slowed movements, muscle stiffness, feeling tremors or shakiness, falling, and similar issues. These symptoms are also prevalent in Parkinson’s disease. 
    • Confusion and changes in alertness: Cognitive fluctuations such as difficulty in concentration, attention, and feeling confused about relatively simple things are signs of LBD. 
    • Mood and emotional changes: LBD patients may experience mood swings and emotional changes. They might feel anxious, apathetic, lack motivation, and develop depression. All these factors can impact their quality of life a great deal. 
    • A decline in thinking ability: People with Lewy body dementia may have problems with critical thinking, problem-solving, planning, and other things which require attention to detail and analytical thinking. 
    • Sleep disorder: Sleep difficulty is also one of the Lewy body dementia symptoms. That includes insomnia, daytime sleeping, difficulty waking up, loss of consciousness, and more. 
    • Memory issues: LBD patients experience loss of memory and difficulty remembering small things or even faces of people. 

How do Lewy Bodies Cause Harm to the Brain? 

As mentioned earlier, Lewy bodies are clusters of protein (alpha-synuclein) that develop inside the brain. These Lewy bodies cause the destruction of specific neurons in the brain that leads to problems in memory, cognition, thinking, and movement. In addition, Lewy body protein deposits damage brain cells and cause them to die over time. 

What Are the Types of Lewy Body Dementia?

There are two types of expressions of Lewy body dementia and diagnosis. They are: 

1. Dementia with Lewy bodies (DLB)

If someone has DLB, they will develop symptoms of dementia and other symptoms associated with Lewy body dementia. One of these symptoms could be difficulty in movement, leading to Parkinson’s disease. In simpler words, if dementia symptoms and movement symptoms both exist during the time of diagnosis, it is likely to be DLB. 

2. Parkinson’s disease dementia (PDD)

In PDD, people experience movement issues first and other symptoms related to Parkinson’s disease. Then over the years, or a few years later, they develop symptoms of LBD.  

So, both diagnoses are similar in terms of underlying problems and brain damage. However, it is recommended to treat DLB and PDD as two separate Lewy body disorders. 

7 Stages of Lewy Body Dementia 

Lewy Body Dementia is a progressive disease that worsens over time and causes a gradual decline in overall health. Hence it is critical to identify the illness at an early stage to minimize the damage. Similar to other progressive disorders, LBD goes through different stages of advancement. Here are the seven stages of Lewy Body Dementia that patients may go through: 

Stage one: No impact on behavior or cognitive abilities.

At this stage, patients experience almost no changes in their behavior or cognitive abilities associated with dementia. However, it is recommended to keep an eye on any abnormalities in movement or behavior. But, again, it has no impact on the quality of life. 

Stage two: Very mild changes in behavior or cognitive abilities.

At this stage, some minor symptoms such as forgetfulness, sleeping problems, or hallucinations can be seen in some individuals. These symptoms can be difficult to notice if not paid close attention to.

Stage three: Mild changes in behavior or cognitive abilities.

At this point, changes or problems are still mild, but patients might experience some movement issues like falls or shakiness. They could also experience some degree of forgetfulness, lack of concentration, and memory loss. It may lead to difficulty in completing daily tasks. 

Stage four: Moderate changes in behavior or cognitive abilities/confirmed diagnosis.

Patients may have already been diagnosed with the disease in the fourth stage. People often feel tremors, have difficulty talking, experience frequent falls, and excessive daytime sleepiness at this stage. It disrupts their daily life, and they require supervision throughout the day. 

Stage five: Moderately severe impact on behavior or cognitive abilities.

At stage five of LBD, the symptoms are relatively severe. Patients experience serious memory loss, disorientation, and hallucinations. At this point, they need around-the-clock supervision and cannot live alone.  

Stage six: Severe impact on behavior or cognitive abilities.

This stage may last a couple of years or more. Here, the symptoms become more severe. Patients are at high risk of developing various health issues such as UTI and bowel incontinence in addition to the typical LBD symptoms. In addition, many of them cannot recognize their loved ones and are unable to speak. At this point, family members may look for an appropriate nursing care plan for Lewy body dementia for their elderly loved one. 

Stage seven: The final stage of LBD results in a severe impact on behavior or cognitive abilities.

At this point, patients may have a severe decline in their physical system and communication abilities. They are mostly unable to walk and need a high level of professional support to carry on with their daily activities. 

Is Lewy Body Dementia an Inherited Condition? 

Though people with a family history of Parkinson’s disease risk having Lewy body dementia, many people develop this disorder without any family connection. So, it cannot be said that LBD is an inherited condition. 

What Treatment and Care Options Are There for Lewy Body Dementia?

Currently, there is no cure for Lewy body dementia, but there are some treatments that you can use to control the symptoms to a certain degree. For example, certain medications can help elevate some of the brain chemicals that reduce memory and thinking symptoms. However, it is strictly recommended to consult with a doctor to assess the patient’s health and symptoms before taking any medication. 

Here are some of the treatment options specifically helpful for the movement, behavior, and sleep disorder symptoms of LBD: 

Treating Movement Symptoms in Lewy body Dementia 

The Lewy Body Dementia Association suggests using a medication called carbidopa-levodopa (Sinemet) as a treatment for Lewy body dementia. It is a Parkinson’s disease medication that can help with movement symptoms. However, it is not recommended for mild symptoms since these drugs can have side effects such as visual hallucination or confusion. In some cases, physiotherapy can also ease the discomfort and stiffness of muscles. 

Treatment of Behavior and Mood Problems in Lewy body Dementia 

Many LBD patients may deal with behavior or mood symptoms such as anxiety, frustration, or anger. These can result from their visual hallucinations, fear, or stress. In some cases, anti-depressants or antipsychotic medications might help to calm them down. However, there are also some no-drug strategies for treating Lewy body dementia. For example: 

      • Cognitive therapy and exercise 

      • Developing a daily routine with flexible schedules 

      • Declutter the living environment to provide a sense of comfort 

      • Counseling and clear communication 

    Treating Cognitive Decline in Lewy body Dementia 

    The best way to treat cognitive decline in Lewy body dementia may vary depending on the individual’s specific symptoms and situation. However, some strategies that may help include:

    1. Improving daily functioning and activities: Activities such as exercise, social interactions, and mental stimulation can help improve overall cognitive function in people with Lewy body dementia.
    2. Treating underlying medical conditions: If an individual’s Lewy body dementia is caused by another medical condition, treating that condition may help improve cognitive function.
    3. Using medications: There are a number of Alzheimer’s medications that may be helpful in treating cognitive decline in Lewy body dementia patients, including cholinesterase inhibitors, memantine, and antipsychotic medications.
    4. Adjusting medication doses: It is important to work closely with a doctor to carefully adjust medication doses, as too high or low doses of certain medications can actually worsen cognitive function in people with Lewy body dementia.

    Managing Sleep Disorders in Lewy body Dementia 

    Sleep Behavior Disorder (RBD) can add to behavioral problems for LBD patients. Some doctors may prescribe, Clonazepam or melatonin, after considering the patient’s symptoms and medical history. As for natural strategies, maintaining proper sleep hygiene, exposure to natural light, soft music, and meditation can be helpful. 

    What Complications Are Associated with Medications Used to Treat Lewy Body Dementia? 

    Please note that Lewy body dementia medications can have mild to severe side effects on the patient. For example, medicines such as Cholinesterase inhibitors that are helpful for hallucinations or confusion may cause muscle cramps, nausea, and headaches. But the good news is that it does not affect behavioral symptoms right away. So, they can be used as a long-term strategy. 

    However, some medicines may worsen behavioral symptoms. For instance, certain drugs for sleep problems or movement symptoms can lead to agitation and hallucination. Besides, anti-depressants can sometimes backfire and worsen the condition of patients with anxiety issues. 

    So, it is crucial to have a regular review of LBD medications with doctors and make necessary adjustments to avoid any adverse side effects. 

    How is Lewy body Dementia Related to Alzheimer’s Disease and Parkinson’s Disease? 

    Lewy body dementia is often linked with Alzheimer’s and Parkinson’s disease. The reason behind this is the Lewy body protein that causes LBD is also responsible for Alzheimer’s and Parkinson’s disease. Besides, these brain disorders have overlapping symptoms such as memory issues and problems with movement and reasoning.  

    The majority of Parkinson’s disease patients have Lewy bodies in their brains and are also found in patients who have similar plaques and tangles in their brains associated with Alzheimer’s disease. Such patients often move to memory care or other care facilities suspecting Alzheimer’s or Parkinson’s diagnosis to find out they have LBD! 

    These similarities in symptoms suggest that Lewy body dementia, Parkinson’s disease, and Alzheimer’s might result from the same underlying abnormalities in how the brain processes the alpha-synuclein protein.  However, all three disorders may co-exist at the same time or separately. 

    What Is the Difference between LBD and Parkinson’s? 

    The main difference between Lewy body dementia vs Parkinson is that Parkinson’s patients first show movement symptoms. Then years later, they might develop dementia. On the other hand, in the case of LBD, patients develop dementia symptoms first, and then they may show movement symptoms. But even though Parkinson’s and LBD might have biological similarities, most patients do not develop both disorders at the same time!

    Frontotemporal dementia vs Lewy body dementia

    Frontotemporal dementia (FTD) and Lewy body dementia (LBD) are two distinct types of progressive neurodegenerative disorders that affect the brain, but they have some key differences:

    Frontotemporal dementia (FTD):

    • FTD occurs with the abnormal formulation of tau and TPD-43 proteins inside the neurons of the front-temporal lobes.
    • It primarily affects the frontal and temporal lobes, causing changes in personality, behavior, and language, while memory is often preserved early on.
    • FTD typically occurs at a younger age (45-65 years old).

    Lewy body dementia (LBD):

    • LBD is characterized by Lewy bodies in the brain, affecting the chemical messengers of the mind, leading to fluctuating cognition, visual hallucinations, Parkinsonism, and REM sleep behavior disorder.
    • Memory impairment is often an early symptom.
    • LBD is more closely related to Parkinson’s and occurs in older adults (75-80 years old on average).

    Final thoughts

    There has been a lot of ongoing research to understand better Lewy body dementia, its origin, and environmental risk factors. Hopefully, these studies will lead to effective treatments and prevention techniques in the near future.  

    While LBD is not curable, some strategies and treatments can help subside the symptoms. Unfortunately, there are few ways to alleviate this debilitating disease, from medication to occupational therapies to lifestyle changes.  

    If your elderly loved one is severely impacted with LBD and needs around-the-clock supervision and assistance, home care services or nursing home support might be helpful in such instances. Their trained caregivers can help lessen the progress of Lewy body dementia. 

    However, it is important to remember that LBD or any other form of illness affects different people differently. So, ensure to consult with your doctor before taking any medication or treatment. 


    What is the main difference between Lewy body dementia and Alzheimer’s?

    The main difference between Lewy body dementia vs Alzheimer’s lies in their underlying pathology. LBD is characterized by the presence of abnormal protein deposits called Lewy bodies in the brain, while Alzheimer’s disease is characterized by the accumulation of beta-amyloid plaques and tau tangles.

    What is the life expectancy with lewy body dementia?

    In general, the average life expectancy for individuals diagnosed with Lewy body dementia is shorter compared to other forms of dementia. On average, individuals with Lewy body dementia have a life expectancy of 5-8 years after symptom onset. However, the range can vary widely from as little as 2 years up to 20 years in some cases.

    Did Robin Williams have Lewy body dementia?

    Yes, it was revealed posthumously that Robin Williams had Lewy body dementia. This was discovered during the autopsy after his death in 2014. The dementia had not been diagnosed during his lifetime, but it is believed to have contributed to the severe depression and other mental health issues he had been struggling with in his final years.

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