Everything You Need to Know About Lewy Body Dementia

Second only to Alzheimer’s disease, Lewy body dementia (LBD) is one of the most common types of progressive dementia. Also referred to as dementia with Lewy bodies, Lewy body dementia occurs when abnormal deposits of protein (Lewy bodies) develop in the brain. Lewy bodies grow in nerve cells in the part of the brain that affects thinking, motor control and memory.

Unlike Alzheimer’s, which causes severe memory problems, LBD affects the way a person processes information. Additionally, LBD produces physical symptoms like Parkinson’s, such as muscle stiffness and tremor. LBD also affects autonomic body functions such as bowel and bladder control, temperature regulation and blood pressure control. It can also cause individuals to act out their dreams and to experience visual hallucinations.

Approximately 1.4 million people in the United States are diagnosed with LBD. That number is probably underestimated, however, since many of its symptoms are like Alzheimer’s and Parkinson’s disease causing many individuals to be misdiagnosed. Although younger individuals may be diagnosed with LBD, it typically begins sometime after the age of 50.

Lewy body dementia is a multi-system disease that causes a gradual, yet steady, decline in mental capabilities. Treatment usually requires a collaborative team of doctors from many different specialties. Early diagnosis is important to extend quality of life. The average lifespan after diagnosis is five to seven years; however, an individual may live as many as 20 years following diagnosis. Symptom severity and symptom development vary widely from person to person, generally most affected by an individual’s overall health and age.

Types of Lewy Body Dementia

Lewy body dementia is an umbrella term for two related conditions with similar symptoms – dementia with Lewy bodies and Parkinson’s disease dementia. Although the two conditions reflect the same underlying biological changes in the brain, the early symptoms of the two conditions differ. As each condition progresses, individuals with both diagnoses develop similar cognitive, behavioral, physical and sleep symptoms.

The two can be distinguished from each other by the timing of the cognitive and movement symptoms. In dementia with Lewy bodies, the cognitive symptoms are seen first, followed by the movement symptoms; whereas, in Parkinson’s disease dementia, the movement symptoms are prominent in the early stages followed by the cognitive symptoms later in the disease process.

Individuals who have dementia with Lewy bodies experience a decline in cognitive abilities that resemble those experienced with Alzheimer’s disease. As the disease progresses, they then begin to experience movement and other distinctive symptoms that indicate dementia with Lewy bodies.

Individuals with Parkinson’s disease dementia experience the characteristic Parkinson’s movement symptoms first. These symptoms include tremors, shuffling gait, muscle stiffness and slowed movements. As the disease progresses, cognitive symptoms and changes in behavior and mood may develop. Not all individuals with Parkinson’s disease develop dementia.

Causes and Risk Factors of Lewy Body Dementia

Researchers haven’t been able to uncover the exact cause of LBD; however, all individuals with LBD have abnormal protein clusters (Lewy bodies) in their brains which cause a disruption in brain function. This protein is also associated with Parkinson’s disease. Scientists just aren’t certain what causes the proteins to build up in the first place. Individuals who have Lewy bodies present in their brains often also have the plaques and tangles associated with Alzheimer’s.

Researchers do know that individuals with LBD experience a loss of certain neurons (brain cells) that produce two important chemicals in the brain. The loss of these chemicals results in the symptoms experienced. Loss of the brain chemical acetylcholine affects memory and learning. Loss of dopamine affects movement, cognition, behavior, mood, motivation and sleep.

Currently, researchers have not been able to identify any genetic causes for LBD, and most people who develop the disease have no family history of the disease. Scientists believe there are probably many factors involved, including genetic and environmental factors combined with the aging process.

An estimated 50-80% of individuals with Parkinson’s disease eventually experience dementia. Some studies indicate that the average time to develop Parkinson’s disease dementia is 10 years after the onset of Parkinson’s. There’s no apparent reason why some individuals develop dementia and others don’t.

Although the cause of LBD is unknown, certain risk factors have been identified that increase an individual’s chances of developing LBD. These include:

  • Age
  • Gender – Men are diagnosed more frequently than women
  • Diseases and health conditions – Certain diseases and health conditions increase risk, including Parkinson’s disease, REM sleep behavior disorder and depression
  • Genetics – Although LBD is not considered to be a genetic disease, if someone in an individual’s family has had Parkinson’s or LBD, their risk may be higher. A small percentage of cases have had a genetic association; but for most cases, the cause is unknown.

Some research indicates that a healthy lifestyle – which includes regular exercise, a healthy diet and mental stimulation – may reduce an individual’s chances of developing many age-associated dementias, including LBD.

Signs and Symptoms of Lewy Body Dementia

In the early stages of LBD (usually before a diagnosis has been made), symptoms can be mild allowing individuals to function normally. As the disease worsens, cognitive and movement difficulties cause individuals to need more and more assistance. As the disease moves into the later stages, individuals may depend upon others entirely to provide for their needs.

Patterns of symptoms typically manifest in four ways:

  • Neuropsychiatric symptoms including behavioral problems, hallucinations and trouble with complex mental tasks
  • Cognitive problems and memory loss
  • Physical symptoms such as balance issues, motor problems, shuffling gait and tremors
  • Changes in attention and alertness

Cognitive symptoms tend to manifest earlier with LBD than with Parkinson’s disease dementia.

Hallucinations (visual, auditory, olfactory and tactile) may be one of the first symptoms to appear and may be recurrent. Hallucinations tend to be detailed and very well formed.

Cognitive issues similar to those of Alzheimer’s occur, such as memory loss, confusion, visual-spatial problems and poor attention (inability to pay attention or fluctuating attention span). Individuals may stare into space for long periods of time and experience disorganized speech.

Movement symptoms occur, although some individuals with LBD may not experience them for several years following diagnosis. Initially, small movement issues happen that are often overlooked, such as a change in handwriting. Parkinsonism is experienced early in the disease process with Parkinson’s disease dementia. These specific Parkinsonism symptoms may include:

  • Smaller handwriting than normal
  • Tremors or shaking, most commonly at rest
  • Shuffling gait
  • Stooped posture
  • Muscle stiffness or rigidity
  • Loss of coordination
  • Slowed movements
  • Frozen stance
  • Balance problems and falls
  • A weak voice
  • Difficulty swallowing
  • Reduced facial expression

Although often undiagnosed, sleep disorders are common with LBD which may include:

  • REM sleep behavior disorder which causes an individual to physically act out their dreams and remain sleeping. This may include talking in one’s sleep, vivid dreaming, falling out of bed and violent movements such as hitting or kicking. Some individuals experience REM sleep behavior disorder years before any other LBD symptoms.
  • Daytime sleepiness which can lead to periods of drowsiness and long naps (2 or more hours) during the day
  • Restless leg syndrome which causes an individual (when resting) to feel the urge to move their legs to stop unusual or unpleasant sensations. Walking or moving about generally helps to relieve the discomfort.
  • Insomnia leads to problems falling or staying asleep as well as waking up too early

Individuals with LBD also experience significant changes in the autonomic nervous system, which controls the functions of the heart, muscles and glands. This can lead to:

  • Poor regulation of/changes in body temperature causing sensitivity to heat and cold
  • Excessive perspiration
  • Problems with digestive functions such as bladder and bowel incontinence and constipation
  • Poor regulation of heart rate, pulse and blood pressure
  • Dizziness
  • Fainting
  • Frequent falls
  • Poor sense of smell
  • Sexual dysfunction

No matter which symptoms manifest early in the disease process, LBD eventually causes similar cognitive, physical and behavioral signs and symptoms.

Changes in mood and behavior are often experienced with LBD. These changes may include:

  • Anxiety, which leads to feelings of intense uncertainty, apprehension and fear
  • Paranoia, which may cause extreme and irrational distrust of others
  • Depression, which can cause a feeling of sadness, make it difficult to enjoy activities or cause trouble with eating, sleeping and other normal activities
  • Loss of motivation and apathy, causing less social interaction and a lack of interest in daily activities and events
  • Agitation and restlessness, exhibited by irritability, an inability to get settled, hand-wringing, pacing and constant repeating of words or phrases
  • Delusions (strongly held false opinions and beliefs not backed up by evidence). Examples include believing that deceased relatives are still alive or that a spouse is having an affair. Another delusion associated with LBD is Capgras syndrome where the individual believes that a friend or relative has been replaced by an imposter.

Diagnosis of Lewy Body Dementia

To best tailor an individual’s treatment, it’s important to know which type of LBD a person has – dementia with Lewy bodies vs. Parkinson’s disease dementia. Medical professionals use the “1-year rule” to diagnose which form of LBD an individual has. The diagnosis is dementia with Lewy bodies when cognitive symptoms develop within a year of movement symptoms, and Parkinson’s disease dementia when cognitive symptoms develop more than a year following the onset of movement symptoms. Regardless of the early symptoms, over time individuals eventually develop similar symptoms, although Parkinson’s disease dementia progresses more slowly.

Because the early symptoms of dementia with Lewy bodies resemble those of Parkinson’s disease, Alzheimer’s disease or a psychiatric illness, it’s often misdiagnosed. As the disease progresses and more symptoms appear, a correct diagnosis is more easily made.

There is no single test to diagnose LBD. In fact, a definitive diagnosis can generally only be made through a brain autopsy after the individual has passed away. After taking a thorough medical history, to get a probable diagnosis a medical professional may perform:

  • Biomarker tests
  • Brain scans
  • Blood tests and other medical tests
  • Sleep studies
  • Tests of autonomic functions
  • Neurological testing and examinations
  • Assessment of mental abilities
  • Neuropsychological testing

An early and accurate probable diagnosis is important so that an individual can have adequate time to:

  • Get proper medical care and avoid potentially harmful treatments
  • Build a support team of friends, family and medical professionals
  • Arrange financial and legal affairs
  • Plan for future medical care
  • Enjoy life to the fullest

Before an individual can receive a diagnosis of Lewy body dementia, they must experience a progressive decline in their ability to think. Additionally, two of the following core symptoms must also be present:

  • Parkinsonian symptoms
  • Repeated visual hallucinations
  • REM sleep behavior disorder
  • Inconsistent and erratic cognitive function and alertness

Treatment and Management of Lewy Body Dementia

Lewy body dementia is a disease that affects multiple systems of the body and requires a wide-ranging treatment approach provided by a collaborative team of medical professionals. Early diagnosis is important to enable treatment options to prolong quality of life and independence. With a comprehensive treatment approach, individuals with LBD may experience substantial lifestyle improvement. With the right plan, some individuals even experience few changes from year to year.

A comprehensive care team works together to develop the best treatment plan possible, which may include medication, counseling and various therapies. Treatment focuses primarily on symptom management.

Medications

Medications are used to treat symptoms. Because certain medications can make some symptoms worse, it’s important to work with healthcare professionals who are knowledgeable in the treatment of LBD. Medications can be used to treat cognitive symptoms, movement symptoms, behavioral problems, sleep disorders and mood problems.

Individuals with LBD can be extremely sensitive to certain medications, including over-the-counter medications. Be sure to talk to your doctor should you notice any side effects of treatment.

Care Team

Treatment of LBD is often accomplished through a variety of professionals. A care team may include:

  • A primary care physician
  • A geriatric neurologist who specializes in dementia and movement disorders
  • Physical therapists to assist with movement problems through strengthening, flexibility and cardiovascular exercises. PT may also include general physical fitness programs and gait training.
  • Occupational therapists who work to find ways to promote independence, helping an individual accomplish everyday activities
  • Speech therapists to help with swallowing difficulties, low voice volume and voice projection
  • Music and expressive arts therapists who offer ways to incorporate meaningful activities into life, improving well-being and reducing anxiety
  • Mental health professionals to provide counsel while also helping individuals with LBD and their families plan and learn how to cope with difficult behaviors and emotions

Support groups are a valuable resource for individuals with LBD and their care providers, providing both emotional and social support. Support groups are a great place to share experiences, discover ways to cope with issues and problems and identify practical solutions to everyday challenges.

Other Treatment Considerations

Since LBD affects the autonomic nervous system, special treatment options may be required to control symptoms. The autonomic nervous system controls many bodily functions such as that of the heart, muscles and glands. Individuals with LBD may need to take certain actions to deal with these symptoms. Examples include:

  • Elevating legs and wearing compression stockings to overcome the effects of low blood pressure, a common issue many individuals with LBD face
  • Increasing fluid and salt intake to overcome low blood pressure
  • Exercise, dietary changes and stool softeners to treat constipation issues

When simple actions such as these, and many others, don’t effectively deal with the symptoms, then medications may be required.

Caution must be used when treating urinary incontinence since certain medications frequently used to control this issue may increase confusion and cause cognition to worsen.

If an individual with LBD requires surgery and must stop taking medications prior to the procedure, talk to medical professionals to develop a plan to carefully withdraw from the medications. Additionally, certain anesthesia can be an issue for some individuals with LBD, even causing a permanent decline in functional abilities; therefore, discuss medication sensitivities and risks unique to LBD with your anesthesiologist. Some procedures may allow alternatives to general anesthesia to be used such as a regional or spinal block. Pain management following the procedure must be discussed with healthcare professionals as well since some individuals with LBD may become delirious if certain medications are used too freely.

Alternative Medicine

When an individual with LBD experiences anxiety and frustration, their dementia symptoms can worsen; therefore, it’s important to find ways to relax. The following techniques may help:

  • Aromatherapy: diffusing certain essential oils, such as lavender, frankincense and peppermint, can help you feel better
  • Massage therapy
  • Pet therapy: petting a dog or cat can be very relaxing and soothing
  • Music therapy: playing calm soothing music can be beneficial

Living with Lewy Body Dementia

Coping with LBD and all that it entails can be difficult. Building a strong team of friends, family and professionals is important to ensure the best possible quality of life for as long as possible. It’s also important to create a safe environment and to prepare for the future.

Take time to enjoy every day, making the most of your time with friends and family. Prepare as best as you can for the changes that will occur. Allow trusted friends and family members to partner with you to manage your responsibilities.

Don’t forget that the disease also affects your family and friends. Talk with them and allow them to help you if they desire. Find someone to talk to about your diagnosis. Talking with a spiritual advisor or mental health professional may be helpful.

Here are a few links that may be helpful as you deal with LBD:

Living with Lewy Body Dementia at The Brielle

At The Brielle, our memory care neighborhood offers programming that has been specifically adapted to assist residents who have memory impairments. Our signature programs foster each resident’s social, intellectual, spiritual and physical well-being, all under the medical guidance of on-site physicians. Our programming is customized to the individual, enabling each resident to thrive and have meaningful interactions, build relationships with others and grow connections through positive approaches to social engagement. Contact us to learn how we can help you or someone you know who has LBD live life to the fullest.



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