Lewy body dementia (LBD) is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. Lewy body dementia is one of the most common causes of dementia.

LBD affects more than 1 million individuals in the United States. People typically show symptoms at age 50 or older, although sometimes younger people have LBD. LBD appears to affect slightly more men than women.

Diagnosing LBD can be challenging. Early LBD symptoms are often confused with similar symptoms found in other brain diseases or in psychiatric disorders. Lewy body dementia can occur alone or along with other brain disorders.

It is a progressive disease, meaning symptoms start slowly and worsen over time. The disease lasts an average of five to eight years from the time of diagnosis to death, but can range from two to 20 years for some people. How quickly symptoms develop and change varies greatly from person to person, depending on overall health, age, and severity of symptoms.

In the early stages of LBD, symptoms can be mild, and people can function fairly normally. As the disease advances, people with LBD require more help due to a decline in thinking and movement abilities. In the later stages of the disease, they often depend entirely on others for assistance and care.

Some LBD symptoms may respond to treatment for a period of time. Currently, there is no cure for the disease. Research is improving our understanding of this challenging condition, and advances in science may one day lead to better diagnosis, improved care, and new treatments.

LBD is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. LBD is one of the most common causes of dementia, after Alzheimer’s disease and vascular disease.

Dementia is a severe loss of thinking abilities that interferes with a person’s capacity to perform daily activities such as household tasks, personal care, and handling finances. Dementia has many possible causes, including stroke, brain tumor, depression, and vitamin deficiency, as well as disorders such as LBD, Parkinson’s, and Alzheimer’s.

Diagnosing LBD can be challenging for a number of reasons. Early LBD symptoms are often confused with similar symptoms found in other brain diseases like Alzheimer’s. Also, LBD can occur alone or along with Alzheimer’s or Parkinson’s disease.

There are two types of LBD—dementia with Lewy bodies and Parkinson’s disease dementia. The earliest signs of these two diseases differ but reflect the same biological changes in the brain. Over time, people with dementia with Lewy bodies or Parkinson’s disease dementia may develop similar symptoms

Who Is Affected by LBD?

LBD affects more than 1 million individuals in the United States. LBD typically begins at age 50 or older, although sometimes younger people have it. LBD appears to affect slightly more men than women.

LBD is a progressive disease, meaning symptoms start slowly and worsen over time. The disease lasts an average of 5 to 7 years from the time of diagnosis to death, but the time span can range from 2 to 20 years. How quickly symptoms develop and change varies greatly from person to person, depending on overall health, age, and severity of symptoms.

In the early stages of LBD, usually before a diagnosis is made, symptoms can be mild, and people can function fairly normally. As the disease advances, people with LBD require more and more help due to a decline in thinking and movement abilities. In the later stages of the disease, they may depend entirely on others for assistance and care.

Some LBD symptoms may respond to treatment for a period of time. Currently, there is no cure for the disease. Research is improving our understanding of this challenging condition, and advances in science may one day lead to better diagnosis, improved care, and new treatments.

What Are Lewy Bodies?

Lewy bodies are named for Dr. Friederich Lewy, a German neurologist. In 1912, he discovered abnormal protein deposits that disrupt the brain’s normal functioning in people with Parkinson’s disease. These abnormal deposits are now called “Lewy bodies.”

Lewy bodies are made of a protein called alpha-synuclein. In the healthy brain, alpha-synuclein plays a number of important roles in neurons (nerve cells) in the brain, especially at synapses, where brain cells communicate with each other. In LBD, alpha-synuclein forms into clumps inside neurons, starting in particular regions of the brain. This process causes neurons to work less effectively and, eventually, to die. The activities of brain chemicals important to brain function are also affected. The result is widespread damage to certain parts of the brain and a decline in abilities affected by those brain regions.

Lewy bodies affect several different brain regions in LBD:

• the cerebral cortex, which controls many functions, including information processing, perception, thought, and language
• the limbic cortex, which plays a major role in emotions and behavior
• the hippocampus, which is essential to forming new memories
• the midbrain, including the substantia nigra, which is involved in movement
• the brain stem, which is important in regulating sleep and maintaining alertness
• brain regions important in recognizing smells (olfactory pathways).

Lewy bodies are named for Dr. Friederich Lewy, a German neurologist. In 1912, he discovered abnormal protein deposits that disrupt the brain's normal functioning in people with Parkinson's disease. These abnormal deposits are now called "Lewy bodies."

Lewy bodies are made of a protein called alpha-synuclein. In the healthy brain, alpha-synuclein plays a number of important roles in neurons (nerve cells) in the brain, especially at synapses, where brain cells communicate with each other. In Lewy body dementia, alpha-synuclein forms into clumps inside neurons, starting in areas of the brain that control aspects of memory and movement. This process causes neurons to work less effectively and, eventually, to die. The activities of certain brain chemicals are also affected. The result is widespread damage to specific brain regions and a decline in abilities affected by those brain regions.

Lewy bodies affect several different brain regions in Lewy body dementia:

• The cerebral cortex, which controls many functions, including information processing, perception, thought, and language
• The limbic cortex, which plays a major role in emotions and behavior
• The hippocampus, which is essential to forming new memories
• The midbrain and basal ganglia, which are involved in movement
• The brain stem, which is important in regulating sleep and maintaining alertness
• Brain regions important in recognizing smells (olfactory pathways)

What is Lewy body dementia (LBD)?

Lewy body dementia (LBD) is one of the most common types of dementia in older adults. Dementia is a loss of mental functions that is severe enough to affect your daily life and activities. These functions include

• Memory
• Language skills
• Visual perception (your ability to make sense of what you see)
• Problem solving
• Trouble with everyday tasks
• The ability to focus and pay attention

What are the types of Lewy body dementia (LBD)?

There are two types of LBD: dementia with Lewy bodies and Parkinson's disease dementia.

Both types cause the same changes in the brain. And, over time, they can cause similar symptoms. The main difference is in when the cognitive (thinking) and movement symptoms start.

Dementia with Lewy bodies causes problems with thinking ability that seem similar to Alzheimer's disease. Later, it also causes other symptoms, such as movement symptoms, visual hallucinations, and certain sleep disorders. It also causes more trouble with mental activities than with memory.

Parkinson's disease dementia starts as a movement disorder. It first causes the symptoms of Parkinson's disease: slowed movement, muscle stiffness, tremor, and a shuffling walk. Later on, it causes dementia.

What causes Lewy body dementia (LBD)?

LBD happens when Lewy bodies build up in parts of the brain that control memory, thinking, and movement. Lewy bodies are abnormal deposits of a protein called alpha-synuclein. Researchers don't know exactly why these deposits form. But they do know that other diseases, such as Parkinson's disease, also involve a build-up of that protein.

Who is at risk for Lewy body dementia (LBD)?

The biggest risk factor for LBD is age; most people who get it are over age 50. People who have a family history of LBD are also at higher risk.

What are the symptoms of Lewy body dementia (LBD)?

LBD is a progressive disease. This means that the symptoms start slowly and get worse over time. The most common symptoms include changes in cognition, movement, sleep, and behavior:

• Dementia, which is a loss of mental functions that is severe enough to affect your daily life and activities
• Changes in concentration, attention, alertness, and wakefulness. These changes usually happen from day to day. But sometimes they can also happen throughout the same day.
• Visual hallucinations, which means seeing things that are not there
• Problems with movement and posture, including slowness of movement, difficulty walking, and muscle stiffness. These are called parkinsonian motor symptoms.
• REM sleep behavior disorder, a condition in which a person seems to act out dreams. It may include vivid dreaming, talking in one's sleep, violent movements, or falling out of bed. This may be the earliest symptom of LBD in some people. It can appear several years before any other LBD symptoms.
• Changes in behavior and mood, such as depression, anxiety, and apathy (a lack of interest in normal daily activities or events)

In the early stages of LBD, symptoms can be mild, and people can function fairly normally. As the disease gets worse, people with LBD need more help due to problems with thinking and movement. In the later stages of the disease, they often cannot care for themselves.

How is Lewy body dementia (LBD) diagnosed?

There isn't one test that can diagnose LBD. It is important to see an experienced doctor to get a diagnosis. This would usually be specialist such as a neurologist. The doctor will

• Do a medical history, including taking a detailed account of the symptoms. The doctor will talk to both the patient and caregivers.
• Do physical and neurological exams
• Do tests to rule out other conditions that could cause similar symptoms. These could include blood tests and brain imaging tests.
• Do neuropsychological tests to evaluate memory and other cognitive functions

LBD can be hard to diagnose, because Parkinson's disease and Alzheimer's disease cause similar symptoms. Scientists think that Lewy body disease might be related to these diseases, or that they sometimes happen together.

It's also important to know which type of LBD a person has, so the doctor can treat that type's particular symptoms. It also helps the doctor understand how the disease will affect the person over time. The doctor makes a diagnosis based on when certain symptoms start:

• If cognitive symptoms start within a year of movement problems, the diagnosis is dementia with Lewy bodies
• If cognitive problems start more than a year after the movement problems, the diagnosis is Parkinson's disease dementia

What are the treatments for Lewy body dementia (LBD)?

There is no cure for LBD, but treatments can help with the symptoms:

• Medicines may help with some of the cognitive, movement, and psychiatric symptoms
• Physical therapy can help with movement problems
• Occupational therapy may help find ways to more easily do everyday activities
• Speech therapy may help with swallowing difficulties and trouble speaking loudly and clearly
• Mental health counseling can help people with LBD and their families learn how to manage difficult emotions and behaviors. It can also help them plan for the future.
• Music or art therapy may reduce anxiety and improve well-being

Support groups can also be helpful for people with LBD and their caregivers. Support groups can give emotional and social support. They are also a place where people can share tips about how to deal with day-to-day challenges.

Lewy body dementia includes two related conditions—dementia with Lewy bodies and Parkinson’s disease dementia. The difference between them lies largely in the timing of cognitive (thinking) and movement symptoms. In dementia with Lewy bodies, cognitive symptoms are noted within a year of parkinsonism, any condition that involves the types of movement changes, such as tremor or muscle stiffness, seen in Parkinson’s disease. In Parkinson’s disease dementia, movement symptoms are pronounced in the early stages, with cognitive symptoms developing years later.

Dementia with Lewy Bodies

People with dementia with Lewy bodies have a decline in thinking ability that may look somewhat like Alzheimer’s disease. But over time they also develop movement and other distinctive symptoms that suggest dementia with Lewy bodies. Symptoms that distinguish this form of dementia from others may include:

• visual hallucinations early in the course of dementia
• fluctuations in cognitive ability, attention, and alertness
• slowness of movement, difficulty walking, or rigidity (parkinsonism)
• sensitivity to medications used to treat hallucinations
• REM sleep behavior disorder, in which people physically act out their dreams by yelling, flailing, punching bed partners, and falling out of bed
• more trouble with complex mental activities, such as multitasking, problem solving, and analytical thinking, than with memory

Parkinson's Disease Dementia

This type of LBD starts as a movement disorder, with symptoms such as slowed movement, muscle stiffness, tremor, and a shuffling walk. These symptoms are consistent with a diagnosis of Parkinson’s disease. Later on, cognitive symptoms of dementia and changes in mood and behavior may arise. Not all people with Parkinson’s develop dementia, and it is difficult to predict who will. Being diagnosed with Parkinson’s late in life is a risk factor for Parkinson’s disease dementia.

The precise cause of LBD is unknown, but scientists are learning more about its biology and genetics. For example, we know that an accumulation of Lewy bodies is associated with a loss of certain neurons in the brain that produce two important chemicals that act as messengers between brain cells (called neurotransmitters). One of these messengers, acetylcholine, is important for memory and learning. The other, dopamine, plays an important role in behavior, cognition, movement, motivation, sleep, and mood.

Scientists are also learning about risk factors for LBD. A risk factor is something that may increase the chance of developing a disease. Some risk factors can be controlled while others cannot. Age is considered the greatest risk factor. No specific lifestyle factor has been proven to increase one's risk for LBD.

Other known risk factors for LBD include certain diseases and health conditions, particularly Parkinson's disease and REM sleep behavior disorder, which have been linked to a higher risk of LBD.

Having a family member with LBD also may increase a person's risk, though LBD is not considered a genetic disease. Variants in three genes — APOE, SNCA, and GBA — have been associated with an increased risk, but in most cases, the cause is unknown.

People with LBD may not have every symptom associated with the disease. Any sudden or major change in functional ability or behavior should be reported to a doctor.

The most common symptoms include changes in cognition, movement, sleep, and behavior.

Cognitive symptoms of Lewy body dementia

LBD causes changes in thinking abilities. These changes may include:

• Visual hallucinations, or seeing things that are not present. Visual hallucinations occur in up to 80 percent of people with LBD, often early on. Nonvisual hallucinations, such as hearing or smelling things that are not present, are less common than visual ones but may also occur.
• Unpredictable changes in concentration, attention, alertness, and wakefulness from day to day and sometimes throughout the day. Ideas may be disorganized, unclear, or illogical. These kinds of changes are common in LBD and may help distinguish it from Alzheimer's disease.
• Severe loss of thinking abilities that interfere with daily activities. Unlike in Alzheimer's dementia, memory problems may not be evident at first but often arise as LBD progresses. Other changes related to thinking may include poor judgment, confusion about time and place, and difficulty with language and numbers.

Movement problems and Lewy body dementia

Some people with LBD may not experience significant movement problems for several years. Others may have them early on. At first, movement symptoms, such as a change in handwriting, may be very mild and easily overlooked. Movement problems may include:

• Muscle rigidity or stiffness
• Shuffling walk, slow movement, or frozen stance
• Tremor or shaking, most commonly at rest
• Balance problems and repeated falls
• Stooped posture
• Loss of coordination
• Smaller handwriting than was usual for the person
• Reduced facial expression
• Difficulty swallowing
• A weak voice

Lewy body dementia and sleep

Sleep disorders are common in people with LBD, but are often undiagnosed. A sleep specialist can help diagnose and treat sleep disorders. Sleep-related disorders seen in people with LBD may include:

• REM sleep behavior disorder
• Excessive daytime sleepiness (sleeping two or more hours during the day)
• Insomnia
• Restless leg syndrome

Behavioral and mood symptoms of Lewy body dementia

Changes in behavior and mood are possible in LBD and may worsen as the person’s thinking abilities decline. These changes may include:

• Depression
• Apathy, or a lack of interest in normal daily activities or events and less social interaction
• Anxiety and related behaviors, such as asking the same questions over and over or being angry or fearful when a loved one is not present
• Agitation, or restlessness, and related behaviors, such as pacing, hand wringing, an inability to get settled, constant repeating of words or phrases, or irritability
• Delusions, or strongly held false beliefs or opinions not based on evidence. For example, a person may think his or her spouse is having an affair or that relatives long dead are still living.
• Paranoia, or an extreme, irrational distrust of others, such as suspicion that people are taking or hiding things

Other symptoms of Lewy body dementia

People with LBD can also experience significant changes in the part of the nervous system that regulates automatic functions such as those of the heart, glands, and muscles. The person may have:

• Changes in body temperature
• Problems with blood pressure
• Dizziness
• Fainting
• Frequent falls
• Sensitivity to heat and cold
• Sexual dysfunction
• Urinary incontinence
• Constipation
• A poor sense of smell

Lewy body dementia (LBD) can be difficult to diagnose. Talking to both patients and caregivers helps doctors make a diagnosis. It is important to ask the patient and their care partners about any symptoms involving thinking, movement, sleep, behavior, or mood. Certain medications can worsen LBD symptoms — be aware of all current medications and supplements the patient is taking.

Dementia with Lewy bodies is often hard to diagnose because its early symptoms may resemble those of Alzheimer's disease or a psychiatric illness. As a result, it is often misdiagnosed or missed altogether. As additional symptoms appear, making an accurate diagnosis may become easier.

The good news is that doctors are increasingly able to diagnose LBD earlier and more accurately, as researchers identify which symptoms and biomarkers (biological signs of disease) help distinguish it from similar disorders.

Visiting a family doctor is often the first step for people who are experiencing changes in thinking, movement, or behavior. If a person’s primary doctor is not familiar with LBD, they may have patients seek second opinions from specialists, like a geriatric psychiatrist, neuropsychologist, or a geriatrician to help diagnose LBD. If a specialist cannot be found in your community, ask the neurology department at a nearby medical school for a referral. Neurologists generally have the expertise needed to diagnose LBD.

Difficult as it is, getting an accurate diagnosis of LBD early on is important so that a person:

• Gets the right medical care and avoids potentially harmful treatment
• Has time to plan medical care and arrange legal and financial affairs
• Can build a support team to maximize quality of life

While a diagnosis of LBD can be distressing, some people are relieved to know the reason for their troubling symptoms. It is important to allow time for the person and their family to adjust to the news. Talking about a diagnosis can help shift the focus toward developing a care plan.

Main Characteristics of Lewy Body Dementia

People with LBD may not have every LBD symptom, and the severity of symptoms can vary greatly from person to person.

Core Clinical Symptoms

• Dementia
• Movement problems/parkinsonism
• Cognitive fluctuations
• Visual hallucinations
• REM sleep behavior disorder

Supportive Clinical Symptoms

• Extreme sensitivity to antipsychotic medications
• Falls, fainting
• Severe problems with involuntary functions (maintaining blood pressure, incontinence, constipation, loss of smell)
• Changes in personality and mood (depression, apathy, anxiety)

Test Results Supporting Diagnosis

Physical and neurological examinations and various tests may help distinguish LBD from other illnesses. Specific tests that may support an LBD diagnosis include:

• A positron emission tomography (PET) scan or a single-photon emission computerized tomography (SPECT) scan showing reduced dopamine transporter (DAT) uptake in the basal ganglia (brain region)
• Abnormal iodine-MIBG myocardial scintigraphy showing reduced communication of cardiac nerves
• Sleep study confirming REM sleep behavior disorder without loss of muscle tone

There are no tests that can definitively diagnose LBD. Currently, only a brain autopsy after death can confirm a suspected diagnosis. However, researchers are studying ways to diagnose LBD earlier and more accurately during life. The use of certain imaging, blood, cerebrospinal fluid, and genetics tests is being studied.

While LBD currently cannot be prevented or cured, some symptoms may respond to treatment for a period of time. An LBD treatment plan may involve medications, physical and other types of therapy, and counseling. A plan to make any home safety updates and identify any equipment can make everyday tasks easier.

A skilled care team often can suggest ways to improve quality of life for both people with LBD and their caregivers.

Building a Lewy body dementia care team

After receiving a diagnosis, a person with LBD may benefit from seeing a neurologist who specializes in dementia and/or movement disorders. Your primary doctor can work with other professionals to follow your treatment plan. Depending on an individual's particular symptoms, physical, speech, and occupational therapists, as well as mental health and palliative care specialists, can be helpful.

Support groups are another valuable resource for people with LBD and their caregivers. Sharing experiences and tips with others in the same situation can help people find practical solutions to day-to-day challenges and get emotional and social support.

Lewy body dementia medications

Several drugs and other treatments are available to treat LBD symptoms. It is important to work with a knowledgeable health professional because certain medications can make some symptoms worse.

Coping with cognitive changes

Some medications used to treat Alzheimer's disease also may be used to treat the cognitive symptoms of LBD. These drugs, called cholinesterase inhibitors, act on a chemical in the brain that is important for memory and thinking. They may also improve hallucinations, apathy, and delusions. The U.S. Food and Drug Administration has approved one Alzheimer's drug, rivastigmine, to treat cognitive symptoms in Parkinson's disease dementia. Several other drugs are being tested as possible treatments for LBD symptoms or to disrupt the underlying disease process.

Treating movement symptoms in Lewy body dementia

LBD-related movement symptoms may be treated with medications used for Parkinson's disease, called carbidopa-levodopa. These drugs can help make it easier to walk, get out of bed, and move around. However, they cannot stop or reverse the disease itself. Side effects of this medication can include hallucinations and other psychiatric or behavioral problems. Because of this risk, physicians may recommend not treating mild movement symptoms with medication. Other Parkinson's medications are less commonly used in people with LBD due to a higher frequency of side effects.

People with LBD may benefit from physical therapy and exercise. Talk with your doctor about what physical activities are best.

Managing sleep disorders in Lewy body dementia

Sleep problems may increase confusion and behavioral problems in people with LBD and add to a caregiver's burden. A physician can order a sleep study to identify any underlying sleep disorders such as sleep apnea, restless leg syndrome, and REM sleep behavior disorder.

REM sleep behavior disorder, a common LBD symptom, involves acting out one's dreams, leading to lost sleep and even injuries to individuals and their sleep partners. Clonazepam, a drug used to control seizures and relieve panic attacks, is often effective for the disorder at very low dosages. However, it can have side effects such as dizziness, unsteadiness, and problems with thinking. Melatonin, a naturally occurring hormone used to treat insomnia, may also offer some benefit when taken alone or with clonazepam.

Excessive daytime sleepiness is also common in LBD. If it is severe, a sleep specialist may prescribe a stimulant to help the person stay awake during the day.

Some people with LBD have difficulty falling asleep. If trouble sleeping at night persists, a physician may recommend a prescription medication. It is important to note that treating insomnia and other sleep problems in people with LBD has not been extensively studied, and that treatments may worsen daytime sleepiness and should be used with caution. Sleep problems can also be addressed by avoiding lengthy naps, increasing daytime exercise, and avoiding caffeine, alcohol, and chocolate late in the day.

Treatment of behavior and mood problems in Lewy body dementia

Behavioral and mood problems in people with LBD can arise from hallucinations, delusions, pain, illness, stress, or anxiety. They may also be the result of frustration, fear, or feeling overwhelmed. The person may resist care or lash out verbally or physically.

Medications are appropriate if the behavior interferes with the person's care or the safety of the person or others. If medication is used, then the lowest possible dose for the shortest period of time is recommended.

The first step is to visit a doctor to see if a medical condition unrelated to LBD is causing the problem. Injuries, fever, urinary tract or pulmonary infections, pressure ulcers (bed sores), and constipation can worsen behavioral problems and increase confusion.

Certain medications, such as anticholinergics and antihistamines may also cause behavioral problems. For example, some medications for sleep problems, pain, bladder control, and LBD-related movement symptoms can cause confusion, agitation, hallucinations, and delusions. Similarly, some anti-anxiety medicines can actually increase anxiety in people with LBD. Review your medications with your doctor to determine if any changes are needed.

Cholinesterase inhibitors may reduce hallucinations and other psychiatric symptoms of LBD, but they may have side effects, such as nausea, and are not always effective. However, they can be a good first choice to treat behavioral symptoms. Cholinesterase inhibitors do not affect behavior immediately, so they should be considered as part of a long-term strategy.

Antidepressants can be used to treat depression and anxiety, which are common in LBD. Many of them are often well tolerated by people with LBD.

In some cases, antipsychotic medications are necessary to treat LBD-related behavioral symptoms to improve the quality of life and safety of the person with LBD and his or her caregiver. These types of medications must be used with caution because they can worsen movement symptoms and cause severe side effects, such as confusion, extreme sleepiness, and low blood pressure that can result in fainting. In rare cases, a potentially deadly condition called neuroleptic malignant syndrome can occur. Symptoms of this condition include high fever, muscle rigidity, and muscle tissue breakdown that can lead to kidney failure. Report these symptoms to your doctor immediately.

Antipsychotic medications increase the risk of death in all elderly people with dementia but can be particularly dangerous in those with LBD. Doctors, patients, and family members must weigh the risks of antipsychotic use against the risks of physical harm and distress that may occur as a result of untreated behavioral symptoms.

Other treatment considerations

LBD affects the part of the nervous system that regulates automatic actions like blood pressure and digestion. One common symptom is orthostatic hypotension, a drop in blood pressure when standing up that can cause dizziness and fainting. Simple measures such as leg elevation, elastic stockings, and, when recommended by a doctor, increasing salt and fluid intake, can help. If these measures are not enough, a doctor may prescribe medication.

People with LBD are often sensitive to prescription and over-the-counter medications for other medical conditions. People with LBD should tell their doctors about every medication they take, including prescription and over-the-counter medicines, vitamins, and supplements. If surgery is planned and the person with LBD is told to stop taking all medications beforehand, ask the doctor to consult the person's neurologist to develop a plan for careful withdrawal. In addition, talk with the anesthesiologist in advance to discuss medication sensitivities and risks unique to LBD. People with LBD who receive certain anesthetics may become confused or delirious and have a sudden, significant decline in functional abilities, which may become permanent.

Depending on the procedure, possible alternatives to general anesthesia may include a spinal or regional block. These methods are less likely to result in confusion after surgery. Caregivers should also discuss the use of strong pain relievers after surgery because people with LBD can become delirious if these drugs are used too freely.

Coping with a diagnosis of Lewy body dementia (LBD) and all that follows can be challenging. Getting support from family, friends, and professionals is critical to ensuring the best possible quality of life. Creating a safe environment and preparing for the future are important, too. Take time to focus on your strengths, enjoy each day, and make the most of your time with family and friends. Here are some ways to live with LBD day to day.

1. Create a support system

Your family and close friends are likely aware of changes in your thinking, movement, or behavior. You may want to tell others about your diagnosis so they can better understand the reason for these changes. For example, you could say that you have been diagnosed with a brain disorder called Lewy body dementia, which can affect thinking, movement, and behavior, and that you will need more help over time. By sharing your diagnosis, you can build a support team to help you manage LBD.

As LBD progresses, you will likely have more trouble managing everyday tasks such as taking medication, paying bills, and driving. You will gradually need more assistance from family members, friends, and perhaps professional caregivers. Although you may be reluctant to get help, try to let others partner with you so you can manage responsibilities together. Remember, LBD affects your loved ones, too. You can help reduce their stress when you accept their assistance.

Finding someone you can talk with about your diagnosis — a trusted friend or family member, a mental health professional, or a spiritual advisor — may be helpful.

2. Take steps to be safe

LBD causes changes in thinking and movement that can lead to safety issues. Consider these steps:

• Fill out and carry the LBD Medical Alert Wallet Card and present it any time you are hospitalized, require emergency medical care, or meet with your doctors. It contains important information about medication sensitivities.
• Consider subscribing to a medical alert service, in which you push a button on a bracelet or necklace to access 911 if you need emergency help.
• Address safety issues in your home. Consider areas of fall risk, poor lighting, stairs, or cluttered walkways. Think about home modifications that may be needed, such as installing grab bars in the bathroom or adding stairs with ramps. Ask your doctor to refer you to a home health agency for a home safety evaluation.
• Talk with your doctor about LBD and driving. Have your driving skills evaluated, if needed.

3. Plan ahead after a Lewy body dementia diagnosis

There are many ways to plan ahead after a diagnosis of LBD. Here are some things to consider:

• Start conversations early. Soon after your diagnosis, start conversations with your family and doctors about the care you’d like to receive in the future.
• If you are working, consult with a legal and financial expert about planning for disability leave or retirement. Symptoms of LBD will interfere with work performance over time, and it is essential to plan now to obtain benefits you are entitled to.
• Consult with an attorney who specializes in elder law or estate planning to help you write or update a living will, health care power of attorney, will, and other documents.
• Identify local resources for home care, meals, and other services before you need them.
• Explore moving to a retirement or continuing care community where activities and varying levels of care can be provided over time, as needed. Ask about staff members' experience caring for people with LBD.

4. Participate in activities you enjoy

Despite the many challenges and adjustments that come with an LBD diagnosis, you can have moments of love, humor, tenderness, and gratitude with the people closest to you. Your attitude can help you find enjoyment in daily life.

Make a list of events and activities you can still enjoy — then find a way to do them! For example, listen to music, exercise, or go out for a meal with family and friends. If you can't find pleasure in daily life, talk with your doctor or another health care professional about effective ways to cope. Let your family know if you are struggling emotionally so they can offer support.

As someone caring for a person with LBD, you will take on many different responsibilities over time. You do not have to face these responsibilities alone. Many sources of help are available, from adult day centers and respite care to online and in-person support groups.

Below are some actions you can take to adjust to your new roles, be realistic about your situation, and care for yourself.

Educate others about Lewy body dementia

Most people, including many healthcare professionals, are not familiar with LBD. In particular, emergency room physicians and other hospital workers may not know that people with LBD are extremely sensitive to antipsychotic medications. Caregivers can educate healthcare professionals and others by:

• Informing hospital staff of the LBD diagnosis and medication sensitivities, and requesting that the person's neurologist be consulted before giving any drugs to control behavior problems.
• Sharing materials with health care professionals who care for the person with LBD. Materials are available from NIH, as well as the Lewy Body Dementia Association and the Lewy Body Dementia Resource Center
• Teaching family and friends about LBD so they can better understand your situation.

Adjust expectations

You will likely experience a wide range of emotions as you care for the person with LBD. Sometimes, caregiving will feel loving and rewarding. Other times, it will lead to anger, impatience, resentment, or fatigue. Recognize your strengths and limitations, especially in light of your past relationship with the person. Roles may change between a husband and wife or between a parent and adult children. Adjusting expectations can allow you to approach your new roles realistically and to seek help as needed.

People approach challenges at varied paces. Some people want to learn everything possible and be prepared for every scenario, while others prefer to take one day at a time. Caring for someone with LBD requires a balance. On one hand, you should plan for the future. On the other hand, you can also focus on creating enjoyable and meaningful moments.

Understand behavioral changes in Lewy body dementia

Behavioral and mood problems in people with LBD can arise from hallucinations, delusions, pain, illness, stress, or anxiety. They may also be the result of frustration, fear, or feeling overwhelmed. The person may resist care or lash out verbally or physically.

Hallucinations and delusions are among the biggest challenges for LBD caregivers. The person with LBD may not understand or accept that the hallucinations are not real and may become agitated or anxious. Instead of arguing, caregivers can help by responding to the fears expressed. By tuning in to the person's emotions, caregivers can offer empathy and concern, maintain the person's dignity, and limit further tension.

Caregivers can try a variety of strategies to handle such challenging behaviors. Some behavioral problems can be managed by making changes in the person's environment and/or treating medical conditions. Other problems may require medication.

It’s also common for people with LBD to have difficulty falling asleep. Certain sleep problems can be addressed without medications. Increasing daytime exercise or activities and avoiding lengthy or frequent naps can promote better sleep. Avoiding alcohol, caffeine, or chocolate late in the day can help, too. Some over-the-counter medications can also affect sleep, so review all medications and supplements with a physician.

Caregivers can alter the home environment to try to minimize anxiety and stress for the person with LBD. In general, people with LBD benefit from having simple tasks, consistent schedules, regular exercise, and adequate sleep. Large crowds or overly stimulating environments can increase confusion and anxiety.

Find time to care for yourself

As a caregiver, it is critical for you to take care of to maintain your own health and well-being. You may be at increased risk for poor sleep, depression, or illness as a result of your responsibilities. Watch for signs of physical or emotional fatigue such as irritability, withdrawal from friends and family, and changes in appetite or weight.

All caregivers need time away from caregiving responsibilities to maintain their well-being. Learn to accept help when it's offered, and learn to ask family and friends for support. One option is professional respite care, which can be obtained through home care agencies and adult day programs. Similarly, friends or family can come to the home or take the person with LBD on an outing to give you a break.

Discuss Lewy body dementia diagnosis with family

Not all family members may understand or accept LBD at the same time. This can create conflict. Some adult children may deny that their parent has a problem, while others may be supportive. It can take a while to learn new roles and responsibilities.

Family members who visit occasionally may not see the symptoms that primary caregivers see daily and may underestimate or minimize your responsibilities or stress. Professional counselors can help provide guidance on how families can work together to manage LBD.

Make plans for the end of life

Advance care planning is an important part of end of life care. Planning ahead can improve the quality of life of the person with LBD and their caregivers and help ensure that the person with LBD has input into health care and legal and financial decisions. Having these conversations early allows the person to actively participate in the decision-making process and express their personal wishes.

For health care providers and caregivers who don’t have experience with LBD, it can be challenging to recognize the end of life. LBD is unpredictable. It can be hard to know when the person will die, and the process may be shorter or longer than expected, which may make coping more difficult. Staying in touch with the person’s physician can help you decide when to pursue end of life care and what to expect towards the end of life. Some physicians may be unlikely to initiate end of life conversations. It is important for caregivers to take an active role during appointments and come prepared.

Spending time and doing simple activities together towards the end of life may help ease the process. Listening to music, spending time outdoors, or watching a favorite television show are just a few examples of activities you can do. Some family members find a lot of value in simply holding their loved one’s hand and talking to them in their last few days.

Many caregivers feel relief when death happens, for themselves and the person with LBD. It is important to realize that these feelings are normal. Get help for your grief.

Many avenues of research are being explored to improve our understanding of LBD. Some researchers are working to identify the specific differences in the brain between the two types of LBD. Others are looking at the disease's underlying biology, genetics, and environmental risk factors. Still other scientists are trying to identify biomarkers (biological indicators of disease), improve screening tests to aid diagnosis, and research new treatments.

Scientists hope that new knowledge about LBD will one day lead to more effective treatments and even ways to cure and prevent the disorder. Until then, researchers need volunteers with and without LBD for clinical studies.