Lewy Body Dementia

This article provides a comprehensive overview of Lewy body dementia, including the symptoms, specific types, and available treatment options, as well as support for caregivers.

Key Takeaways:

• Lewy body dementia is the second most common form of dementia, behind Alzheimer’s disease. It is a neurodegenerative condition that causes progressive loss of brain function over time.

• Lewy body dementia often affects cognition, mood, and sleep, along with movement and physical function. Due to the progressive nature, symptoms get worse over time.

• There is no cure, but medication, therapy, and other treatments can be effective in reducing symptoms and improving life quality.

Understanding Lewy Body Dementia

Lewy body dementia (or LBD) is a neurodegenerative condition, which involves progressive loss of brain function over time. One of the hallmark features of LBD is the presence of Lewy bodies, which are abnormal proteins that build up in brain cells. There are other involved factors as well, which ultimately lead to deteriorating brain function. ^{[1] [2]}

Due to these effects, LBD often leads to problems with memory and cognitive function, behavioral and emotional disruptions, and a reduced ability to live independently. Since it is a progressive condition, symptoms get worse over time and eventually require full-time care.

How Common is It?

LBD is the second most common form of dementia, falling right behind Alzheimer’s disease. It accounts for 20 to 30% of all dementia cases. ^{[1] [3]}

Lewy body dementia typically begins at age 50 or older, and the overall prevalence increases with age. However, it can affect younger individuals too. It is more common in men than women. ^{[1] [2] [4]}

Symptoms

There are many possible symptoms of Lewy body dementia. These vary in presentation and overall severity from person to person. Lewy body dementia can affect cognition, mood, behavior, sleep, and movement. Listed below are specific symptoms of Lewy body dementia grouped by these categories: ^{[2] [3] [4] [5]}

Cognitive Symptoms

• Poor attention and focus

• Decreased visual ability, depth perception, etc.

• Difficulty problem-solving and multitasking

• Memory problems

• Confusion, such as with time and place

• Poor judgment

• Difficulty with language, numbers, and abstract concepts

• Disorganized or illogical thoughts

• Disorganized speech

• Staring off into space

• Changes in concentration and alertness

• Hallucinations (especially visual)

Mood & Behavioral Symptoms

• Depression

• Anxiety

• Apathy

• Agitation/irritability

• Restlessness

• Paranoia

• Isolation from others

• Lack of interest in activities

• Pacing

• Repeating words or phrases

• Hand-wringing

Sleep Symptoms

• Rapid-eye movement (REM) sleep behavior disorder

• Involves vivid dreaming and appearing to act out dreams

• Sleeping a lot during the day

• Insomnia

• Restless leg syndrome

Movement Symptoms

• Moving slowly

• Muscle rigidity or stiffness

• Shuffling walk

• Tremors or shaking, especially at rest

• Issues with balance and coordination

• Falls

• Smaller than normal handwriting

• Difficulty swallowing

• Weaker voice

Individuals with Lewy body dementia may also experience changes in autonomic nervous system function. This can lead to issues, such as:

• High blood pressure

• Sweating

• Fainting

• Constipation

• Urinary incontinence

• Heightened sensitivity to temperature

• Impaired sexual response

• Digestive issues

What Types of Lewy Body Dementia are There?

There are two main types of Lewy body dementia:

• Dementia with Lewy bodies

• Parkinson disease dementia

Both of these types are essentially caused by the same changes in the brain, including the presence of Lewy bodies. However, the difference lies in the way these changes specifically affect the brain.

In dementia with Lewy bodies, the Lewy bodies initially develop in both the brainstem and frontal cortex. This leads to earlier onset of cognition, alertness, and other mental symptoms, whereas movement problems and other physical issues develop later on. ^{[1] [2] [4]}

In Parkinson disease dementia, the Lewy bodies initially form in the brain stem only and affect the cerebral cortex later on. In this case, the movement symptoms (e.g. shaking, stiffness) show up first, while cognitive and mood disturbances develop later. ^{[1] [2] [4]}

Causes

One of the main features of Lewy body dementia is the presence of Lewy bodies, which are specific protein deposits that build up in brain and nerve cells. This damages brain and nervous system function and eventually causes these cells to die. ^{[1] [2] [4]}

LBD is also associated with lower levels of acetylcholine and dopamine, which are two neurotransmitters. Acetylcholine is vital for learning, memory, and general cognition, while dopamine is involved in cognition, movement, mood, and other functions. ^{[1] [2]}

However, what causes these things to happen is still unknown. Certain risk factors for LBD include: ^{[1] [2] [3]}

• Older age

• Genetic variants

• Unhealthy lifestyle

• Certain diseases and health conditions

• esp. REM sleep behavior disorder and loss of smell

Risks and Complications

Lewy body dementia is associated with a number of risks and complications. The progressive nature of LBD means that someone with this disorder will experience a worsening ability to function over time. LBD can significantly affect one’s mood, thinking abilities, movement, and ability to carry out daily living tasks. As the disease progresses, individuals may eventually need full-time assistance.

LBD also increases the risk of falls, immobility, heart complications, pneumonia, swallowing problems, digestive issues, aggression and depression/suicidality. The average life expectancy is around 5 to 8 years after initial diagnosis, although it can be as little as 2 years or as long as 20 years or more. ^{[1] [3] [4]}

Diagnosing Lewy Body Dementia

Diagnosing Lewy body dementia requires a careful, comprehensive evaluation. This ensures an accurate diagnosis and can help rule out other conditions, some of which can present very similarly to LBD.

The entire diagnostic process involves a detailed history and physical examination, mental assessment, lab testing, imaging, and a sleep evaluation. ^[1]

The main features that clinicians look for in diagnosis are progressive dementia, changes in cognitive function, visual hallucinations, delusions, syncope, and Parkinson-related features, such as tremors and muscle rigidity. ^[1]

Based on these features, diagnosis is as follows: ^[1]

• Probable LBD: Progressive dementia plus 2 or more main features

• Possible LBD: Progressive dementia plus 1 main feature

Individuals are diagnosed with dementia with Lewy bodies if dementia occurs first or within 1 year of a movement disorder. And individuals are diagnosed with Parkinson disease dementia if they receive a Parkinson’s disease diagnosis first and then develop dementia symptoms 1 year or longer afterward. ^{[1] [5]}

Tests and Assessments

A variety of tests and assessments are used to diagnose LBD. These are used to help confirm the diagnosis and rule out other causes or conditions.

A comprehensive physical exam is often the first step. This may include specific tests, such as: ^[1]

• Vitamin B12

• Chemistry panel

• Thyroid function

• HIV

• Syphilis

This also involves a neurological exam, where your doctor will test your reflexes, strength, muscle tone, eye movements, balance, and sense of touch. ^[6]

If LBD is suspected, primary care doctors typically refer the patient to a neurologist or other professional who has significant experience in diagnosis, such as geriatric psychiatrists or neuropsychologists. ^[2]

A variety of brain imaging studies are also often implemented to look for specific abnormalities with regard to brain structure and/or function. These tests include: ^{[1] [2] [6]}

• Computed tomography (CT) scan

• Magnetic resonance imaging (MRI)

• Positron emission tomography (PET) scan

• Single-photon emission computerized tomography (SPECT) scan

Neuropsychological tests, such as the Mini-Mental Status Exam, are also used to assess mental function. They may also test for hypersomnia, anxiety, apathy, and other mental health disorders or concerns. ^[1]

A sleep study may also be implemented, particularly to look for REM sleep behavior disorder.

Treatment Options

Lewy body dementia is treated with medication and various therapies. There’s no cure for LBD, but these treatments can help reduce symptoms and improve life quality.

Medication

Several medications may be used to treat the symptoms of LBD, including:

• Cholinesterase inhibitors (e.g. rivastigmine, galantamine): These are the most common (and typically the safest) for LBD. They increase acetylcholine levels, which helps with cognitive function.

• Carbidopa-Levodopa: This drug increases dopamine levels in the brain, which may help with movement symptoms. However, there are significant possible side effects, such as delusions and hallucinations.

• Selective-serotonin reuptake inhibitors (SSRIs): These are commonly used antidepressants to help with co-occurring depression or other mood issues.

• Atypical antipsychotics (e.g. pimavanserin, clozapine): These are sometimes used for hallucinations and more severe symptoms for people not responding to cholinesterase inhibitors. They can cause severe symptoms, such as severe parkinsonism and sedation, and thus are used briefly and only in cases with a low risk to benefit ratio.

• Melatonin: For sleep

Therapy

A variety of therapies can help improve life quality and manage common symptoms. Specific therapies include: ^{[1] [6]}

• Physical therapy: to help with movement, balance, and other motor concerns

• Occupational therapy: to improve daily living skills and independent functioning

• Speech therapy: to improve communication and language, as well as swallowing

• Support groups: to connect with others with LBD and help better process the condition and its effects

• Psychotherapy: to help manage thoughts, emotions, and behaviors

Other therapies may also be used to promote relaxation, stress management, and enjoyment, such as art, music, massage, or pet therapy. ^[6]

Living with Lewy Body Dementia

Living with Lewy body dementia can be challenging and stressful; physically, mentally, and emotionally. That’s why it’s important to take care of yourself and focus on ways to manage your condition as much as possible. In addition to professional treatment, there are many things you can do on a regular basis to make daily life more manageable, such as: ^{[2] [6]}

• Reduce clutter, noise, and unnecessary items

• Use daily routines and schedules

• Engage in enjoyable activities and hobbies

• Healthy lifestyle habits, such as nutritious meals, exercise/movement, and adequate sleep

• Find support from family and friends

• Break tasks down into smaller, simpler steps

Caring for Someone Else

Caring for someone with Lewy body dementia is a highly important role. Caregivers have the responsibility of maintaining the patient’s safety and overall well-being, while helping them function better overall. Ways to do this include: ^[6]

• Regularly monitor behaviors, mood, and mental status

• Watch out for sudden changes

• Establish routines and rituals, such as with sleeping and eating

• Use clear, simple language when communicating

• Encourage exercise, socialization, and mental stimulation

• Make sure the home/environment is safe and free of hazards

• Practice reassurance and validation

• aim to avoid confrontational, correctional, or aggressive communication

Caring for someone with LBD can be stressful. So, it’s important to practice self-care, engage in a healthy lifestyle, and seek support when needed.

Notable Research and Resources

The following organizations provide more information about Lewy body dementia, as well as resources and support:

• Lewy Body Dementia Association

• Alzheimer’s.gov

• Lewy Body Dementia Resource Center

• The Lewy Body Society

The Lewy Body Dementia Association also has a list of recent research findings, as well as a list of notable clinical research trials that are actively recruiting participants.

Researchers are continuing to explore better ways to diagnose and treat LBD. They are hopeful that this will lead to more effective treatments and possibly cures one day.