What Is Lewy Body Dementia?

Updated April 23, 2024by BetterHelp Editorial Team

Several degenerative brain diseases affect cognitive function in people of all ages. One such type of dementia is diffuse Lewy body dementia, which can impact millions of people worldwide. Understanding this condition and its symptoms may prepare you if you or someone you love is experiencing symptoms.

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Definition of diffuse Lewy body dementia

Diffuse Lewy body dementia is the second most common type of degenerative dementia, affecting over 1.4 million people and their families in the US annually. Some people may have never heard of the condition, and some doctors may be unfamiliar with how it is diagnosed and treated. However, education can be essential to early detection and diagnosis.

Diffuse Lewy body dementia is a brain disorder that progressively worsens. It's characterized by Lewy body deposits in brain regions that control thought, behavior, and movement. Diffuse Lewy body dementia also affects the autonomic nervous system, causing challenges with blood pressure, temperature management, and bladder and bowel incontinence.

What’s the origin of the name?

Over 100 years ago, in 1912, Fritz Heinrich Lewy studied the brains of people with Parkinson's disease. He found that there were bodies of protein in the nerve cells of the brain's basal ganglia. The basal ganglia are structures in the base of the brain that are involved in movement and coordination.

Although Lewy noticed these bodies, he didn't know that it was characteristic of a specific type of disease. Nevertheless, his contribution to the science of dementia was significant enough that Lewy bodies and Lewy body dementia were named after him.

What is a Lewy body?

Lewy bodies are abnormal formations of protein. They develop inside nerve cells and contribute to Parkinson's disease with or without dementia and Lewy body dementia. They look like a spherical mass and have a dense core and a radiating halo.

What does “diffuse” mean in LBD?

If a stimulus is diffuse, it is spread out and not concentrated. The reason the word "diffuse" is used as a part of the name of diffuse Lewy body dementia is that it indicates that the Lewy bodies have spread out over extended areas of the brain.

How Lewy bodies affect the brain

Lewy bodies impact the way the brain works. They can cause multiple problems with brain functioning that go beyond the potential forgetfulness of old age. Below are some of the impacts.

REM sleep behavior disorder

REM sleep behavior disorder (RBD) is a common feature of diffuse Lewy body dementia. In RBD, the person has vivid dreams that they act out while they sleep. They may dream they are being chased, so they run in their sleep. They may dream they are being attacked and fight back physically.

Many people's bodies are relaxed or paralyzed during REM sleep. The nervous system doesn't complete this job for people with LBD, so the muscles remain tense as if they were awake. Their dreams may be frightening, and they may act them out because of the RBD.

Severe neuroleptic sensitivity

Doctors can treat hallucinations, delusions, or other behavioral disturbances in most dementias with neuroleptic medications such as haloperidol. However, 50% of people with Lewy body dementia are susceptible to these medications. They have severe reactions that can lead to faster cognitive decline, parkinsonism, drowsiness, neuroleptic malignant syndrome (NMS), or death. Neuroleptic malignant syndrome is a life-threatening reaction to neuroleptics that can cause fever, rigidity in the muscles, and changes in mental state.

Reduced dopamine transporter activity

Dopamine transporters are proteins that manage dopamine reuptake to end a dopamine transmission. People with diffuse Lewy body dementia have decreased dopamine transporter activity in their brains. Scientists can measure the level of this activity. The effects are changes that cause Parkinsonism symptoms.

Risk factors for LBD

Scientists know little about the risk factors for diffuse Lewy body dementia. What is certain is that LBD is more common in males, people over 60, and those who have a history of it in their families. Researchers have identified a few environmental risk factors, including exposure to some metals and air pollution.

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Symptoms of diffuse Lewy body dementia

Diffuse Lewy body dementia can have many different symptoms. Early on, you may notice symptoms like:

Changes in reasoning
Confusion or alertness at different times
Hunched posture
Balance difficulties, including frequent falls
Changes in handwriting
Weak voice
Loss of smell
Misidentifying objects in low light
REM sleep disorder
Shuffling gait

The most common symptoms include changes in cognition, movement, and sleep, as well as behavioral symptoms. Early stages of Lewy body dementia can sometimes be confused with psychiatric disorders that have similar symptoms. Below is more information about the challenging symptoms that may occur with diffuse Lewy body dementia.

Memory and cognitive symptoms

Memory problems may be the first clue that you or a loved one has some form of dementia. People with diffuse Lewy body dementia can be forgetful. They can also have trouble with problem-solving and analytical thinking. It may be difficult for them to plan or follow a plan step-by-step. They may be alert and attentive at one time of day and confused or lacking in concentration at another time.

People with LBD may have difficulty interacting in conversations or could start to speak in a disorganized way. They may become confused. Spatial relationships may be complicated to assess, and they may lose their sense of direction.

Psychiatric symptoms

People with diffuse LBD may have visual or auditory hallucinations or hallucinations related to other senses, such as touch. They may have depression, become apathetic, and have delusions or false beliefs. They may also struggle with anxiety. Visual hallucinations can be distinctive symptoms that indicate a patient has Lewy body dementia (LBD) rather than another type of dementia.

Parkinsonian symptoms

Parkinsonian, or Parkinson 's-like symptoms, are common in diffuse Lewy body dementia, as Parkinson’s disease and Lewy body dementia are caused by the same underlying changes in the brain. This group of significant movement problems includes muscle rigidity, shuffling gait, balance problems, tremors, moving slowly, weak voice, changes in handwriting, changes in facial expressions, drooling, loss of sense of smell, and changes in posture.

Sleep problems

In addition to acting out dreams due to RBD, people with diffuse Lewy body dementia may have other sleep-related struggles. They may fall out of bed often, be highly sleepy during the day, have insomnia, or experience restless leg syndrome (RLS). Symptoms like restless leg syndrome can make other symptoms worse if the patient doesn’t get enough sleep.

Autonomic system dysfunction

Because diffuse Lewy body dementia affects the autonomic nervous system, it can cause problems in physical functioning. People with LBD may get lightheaded, lose consciousness, have unexplained blackouts, or become increasingly sensitive to heat and cold. They may also have trouble with sexual dysfunction or urinary incontinence, and constipation is common.

Unpredictability in severity of symptoms

One sign of diffuse Lewy body dementia is that your condition can change dramatically throughout your days. You may not know when you will have a positive or negative day. You may get better or worse from morning to evening. You could experience significant movement problems over the weekend but then regain full mobility on Monday. Unpredictability can bring false hope or despair. The fluctuations in functioning from day to day are other distinctive symptoms that distinguish Lewy body dementia from other neurological disorders.

What to expect with Lewy body dementia

It can be challenging to know what to expect with diffuse Lewy body dementia daily and in the long term. The condition is a progressive disease, meaning symptoms start slowly and become worse over time. Some people can live with Lewy body dementia for up to 20 years. Others don't survive for two years. The average time people live with LBD is five to seven years after diagnosis.

With an early diagnosis, you or your loved one can receive treatment for their symptoms. You can also benefit from community resources and information about caring for a loved one with LBD.

How LBD is diagnosed

Doctors start the assessment for diffuse Lewy body dementia by talking to the patient and their family to learn about the symptoms they're experiencing. A progressive decline in cognitive ability is one of the primary symptoms they look for, but two core symptoms of the following must be present:

Fluctuating alertness and thinking problems
Visual hallucinations
Parkinsonian symptoms
REM sleep behavior disorder

If you are experiencing symptoms involving thinking and memory issues, it may be helpful to bring a family member to doctor’s appointments so they can help you understand and remember what the doctor is telling you. Someone close to you may also help give a full picture of the symptoms you’re experiencing, such as noting when visual hallucinations occur or discussing a loss of cognitive function that they’ve noticed.

Vital signs

The doctor may check your vital signs and ask you to do so at home for a period as well. They often look for blood pressure, heart rate, and body temperature instability. They may also note autonomic changes like sweating, excessive sleepiness, and loss of the sense of smell.

Monitoring symptoms at home can help ensure doctors have a complete overview of how your body is performing. For example, symptoms such as orthostatic hypotension, which is low blood pressure when you stand up after sitting or lying for a period of time, may not always be apparent after a single doctor’s visit.

Neurological and cognitive exam

To check for Parkinsonian symptoms, the doctor may check your muscle tone, eye movements, reflexes, strength, balance, and gait. The doctor may give you a pen and paper or an oral test to test for cognitive symptoms like memory loss or a decline in thinking abilities.

The one-year rule: Parkinson’s disease dementia vs. Lewy body dementia

Knowing how long the symptoms have been going on can benefit your doctor. Doctors use the one-year rule for distinguishing between Parkinson's disease and dementia with Lewy bodies. If cognitive difficulties occur for more than a year before movement problems start, the diagnosis is the movement disorder Parkinson's disease dementia. Lewy body dementia is more appropriate if the cognitive symptoms start simultaneously or at least a year before the movement problems begin.

Testing for diffuse Lewy body dementia

One of the first steps your doctor may take is tests to rule out other diagnoses. For example, they might give you a blood test to ensure your problem isn't due to an underactive thyroid.

Your doctor may also do imaging tests to support the diagnosis if they determine that you have diffuse Lewy body dementia. There are no definitive answers the doctor can gain through tests alone. However, the tests may still be helpful. These can include PET scans, single-photon emission computerized tomography (SPECT), tests to check nerve function in the heart, or sleep studies to monitor brain wave activity.

Treatment for diffuse Lewy body dementia

There's no cure for diffuse Lewy body dementia yet. However, some medications and treatments may reduce symptom severity, including the following.

Medications

Clinical trials continue to test the efficacy of various medicines in the treatment of Lewy body dementia. People with the condition often find that medications can slow the progression of cognitive decline, minimize Parkinsonian symptoms, and relieve other symptoms. These medications could include:

Cholinesterase inhibitors to improve alertness and memory
Parkinson's medications to reduce movement problems
Medications to relieve other symptoms, like sleep disorders or movement problems

Consult a doctor before starting, changing, or stopping any medication for your condition or symptoms.

Therapy

Various therapies are available to help people with diffuse Lewy body dementia. These therapies can help LBD patients function better in their daily activities, be more physically comfortable, and cope with emotional challenges. These options may include speech, occupational, physical, and other types of therapy, as well as support groups. Specialists may also help with specific symptoms, such as offering guidance on managing sleep disorders that often accompany the condition.

Individual psychotherapy and family therapy

Individual and family therapy are available for people with diffuse Lewy body dementia and those who care for them. Therapy has both practical and emotional benefits. A therapist can teach problem-solving skills, relaxation techniques, and coping methods. Caregivers, especially family members who may struggle to see their loved one in this state, can benefit from these techniques.

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Alternative treatment options

When someone is diagnosed with LBD, it may affect them and their loved ones. Reaching out for help may be challenging if caregiving schedules or one's disability makes it challenging to leave home. Online therapy through a platform like BetterHelp can provide the support patients and caregivers seek to navigate the challenges they're experiencing.

A potential benefit of online therapy is attending sessions from the comfort of your home, or anywhere you have an internet connection. Whether fitting caregiving into a busy work schedule or trying to coordinate family sessions for multiple people, online therapy can be convenient.

Studies show that online therapy is effective, leading to a 50% improvement in symptoms of depression, generalized anxiety, and other mental health conditions and significantly decreasing the impact of stress and chronic fatigue.

Takeaway

Diffuse Lewy body dementia is a common degenerative dementia, second only to Alzheimer's. Treatment may involve medications and therapy to help reduce the severity of symptoms. If you or someone you love has been diagnosed with LBD, therapy may help you work through any complicated emotions about your symptoms or prognosis. You're not alone, and compassionate support is available.

Frequently asked questions

Read more below for answers to questions commonly asked about this topic.

What is diffuse Lewy body dementia?

Dementia with Lewy bodies is a form of degenerative dementia that affects the brain, disrupting the autonomic nervous system and leading to changes in thought, movement, and behavior. LBD can also refer to Parkinson’s disease. According to the Lewy Body Dementia Association, these types of progressive dementia affect approximately 1.4 million individuals in the United States alone. While symptoms can start off slowly, this disease can quickly lead to significant challenges with memory, reasoning, and problem-solving. As it progresses, it can also cause sleep disturbances and slowed movement.

What are 3 signs of Lewy body dementia?

While Lewy body dementia may refer to dementia with Lewy bodies or Parkinson’s disease, there are several signs that a person may be experiencing a condition under this classification. 3 of these signs may include:

Significant changes in thinking, decision-making, and reasoning abilities
Delirium-like symptoms that may cause difficulties with cognition
Changes in movement, including slowness, tremors, and rigidity.

If you notice that you or a loved one is exhibiting these dementia symptoms, it is important to get support as soon as possible. A doctor may be able to provide a diagnosis and create a treatment plan that may help to alleviate your symptoms.

What causes diffuse Lewy body disease?

Dementia with Lewy bodies (DLB) is caused by a buildup of abnormal protein particles called Lewy bodies. These buildups are also associated with other conditions, including Parkinson’s disease. These buildups occur as the tissues of the brain decay. While some experts believe this build-up is connected to family history and genetics, there may be multiple reasons that someone could experience this process or develop DLB. DLB can affect a number of functions in the brain, including one’s ability to reason and think. In addition, DLB may create disturbances in REM sleep and cause slow movement.

What are the first symptoms of Lewy body dementia?

The initial LBD symptoms can progress slowly, many experience significant challenges like struggles with thinking, changes in mood, and recurrent visual hallucinations. These hallucinations can take multiple forms, including seeing shapes, animals, and people that aren't there. LBD can also cause other forms of body dysfunction, including rapid changes in blood pressure and heart rate, struggles with digestion, and excessive sweating. These complications may result in inconvenience, dizziness, and constipation.

Who is at high risk for Lewy body dementia?

One of the biggest risk factors for the development of LBD is age. In addition, those experiencing high blood pressure or diabetes may also have an increased risk of developing LBD. While it may not be possible to prevent LBD, Alzheimer’s Research UK suggests several ways to keep one’s brain healthy in order to reduce risk.

Avoid substances like tobacco and other nicotine products or overconsumption of alcohol
Regularly exercise
Maintain a healthy diet and weight
Get regular blood pressure and cholesterol checks
Socialize and engage in mentally stimulating hobbies

In addition, Alzheimer’s Research UK suggests that men are more likely to get a specific form of LBD known as dementia with Lewy bodies. Those with a family history of LBD may also be at a higher risk of developing these conditions.

How is Lewy body dementia detected?

Getting a diagnosis of LBD (sometimes incorrectly referred to as “Lewy bodies dementia”) requires the assistance of a medical professional. These professionals will typically ask what symptoms you are experiencing and request a copy of your medical history. After that, your doctor will likely run a variety of tests. These can include a single-photon emission computed tomography (SPECT) scan or a positron emission tomography (PET) scan. Imaging tests like the SPECT and PET can look at a brain region known as the basal ganglia in order to identify reduced dopamine transporter uptake. In addition, a sleep study can help to show whether a person is experiencing a common co-occurring condition, REM sleep behavior disorder.

Is Lewy body dementia curable?

According to the National Institute on Aging, there is currently no way to prevent or cure LBD. However, there are treatments that may help to alleviate certain symptoms. These treatments vary but may include therapeutic approaches, physical therapy, and certain types of medication. A medical team, often including mental health professionals, palliative care specialists, or physical therapists, can assist those experiencing LBD by creating a viable treatment plan. In addition, it may be helpful to seek out loved ones or support groups in order to create a sustainable social support network. Socialization can help to keep the brain active and in some cases may help to slow the progression of cognitive impairment.

Is Lewy body worse than Alzheimer's?

LBD (which includes dementia with Lewy bodies and Parkinson’s disease) and Alzheimer’s disease (sometimes incorrectly referred to as “Alzheimer’s dementia”) discuss many similarities. However, dementia with Lewy bodies (DLB) may have certain symptoms that could be considered worse than Alzheimer’s. One difference between LBD and Alzheimer’s is their early stages are the progression of hallucinations. Those with DLB may experience hallucinations as one of their initial symptoms, which may manifest as various shapes, animals, or people. In addition, rapid eye movement (REM) sleep disorder and movement disorders may also be more common with LBD.

What is the treatment for Lewy body dementia?

There are several treatments that may help those experiencing LBD, including:

Psychological Therapy: Therapeutic approaches like cognitive stimulation therapy can help those experiencing LBD and other forms of dementia improve their problem-solving, decision-making, language, and memory abilities. While some of these processes may have been automatic functions before, those with LBD may need assistance in order to ensure they can perform these abilities as their condition progresses.
Occupational and Physical Therapy: Occupational therapy can help to provide support to those experiencing dementia by showing them how to adapt to their symptoms, complete household tasks, take care of body functions, and communicate with their care team and loved ones. Physical therapy, on the other hand, can help to address movement symptoms, such as problems with balance and shuffling gait.
Medication: Certain medications like cholinesterase inhibitors may be used as treatments for the cognitive problems associated with Lewy body dementia. In addition, selective serotonin reuptake inhibitors have been used for depressive symptoms, and antipsychotic medications have been used in the past to combat hallucinatory symptoms. However, research suggests these antipsychotics may cause an adverse reaction in a significant number of patients.

How can you prevent Lewy body dementia?

While there may not be a proven way to ensure that LBD is prevented, there are certain lifestyle changes and behaviors that may improve brain health. Here are a few actions that may be helpful.

Eating a healthy and balanced diet that provides a significant amount of nutrients and vitamins
Seeking assistance for any physical or mental health conditions that have not been treated
Frequently exercising and engaging in physical activities that you enjoy
Keeping in contact with friends and family
Finding ways to relieve stress
Avoiding the misuse of substances like alcohol
Keeping your mental abilities honed through activities like adult education

In addition to keeping your brain healthy, it's also important to get regular check ups with your primary care physician. These professionals can help to identify the symptoms of LBD early, which can allow you to get started on a treatment plan.

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