LEARN ABOUT:

• Dementia with Lewy bodies

• Parkinson’s disease dementia

LEWY BODY DEMENTIA

Information for Patients, Families, 

and Professionals

National Institute on Aging

National Institute of Neurological Disorders and Stroke
CONTENTS

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

The Basics of Lewy Body Dementia . . . . . . . . . . . . . . . . . . . . 2

Types of Lewy Body Dementia . . . . . . . . . . . . . . . . . . . . . . . . 5

Causes and Risk Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

Common Symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Treatment and Management . . . . . . . . . . . . . . . . . . . . . . . . 17

Advice for People Living with Lewy Body Dementia . . . . . . 27

Caring for a Person with Lewy Body Dementia . . . . . . . . . . 30

Research—The Road Ahead . . . . . . . . . . . . . . . . . . . . . . . . 36

Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37
1

Introduction

Lewy body dementia (LBD) is a complex and challenging brain disorder. 

It is complex because it affects many parts of the brain in ways that 

scientists are trying to understand more fully. It is challenging because 

its many possible symptoms make it hard to do everyday tasks that once 

came easily. 

Although less known than its “cousins” Alzheimer’s disease and Parkinson’s 

disease, LBD is not a rare disorder. More than 1 million Americans, most 

of them older adults, are affected by its disabling changes in the ability to 

think and move.

As researchers seek better ways to treat LBD—and ultimately to find a 

cure—people with LBD and their families struggle day to day to get an 

accurate diagnosis, find the best treatment, and manage at home. 

This booklet is meant to help people with LBD, their families, and professionals learn more about the disease and resources for coping. It explains 

what is known about the different types of LBD and how they are diagnosed. 

Most importantly, it describes how to treat and manage this difficult disease, 

with practical advice for both people with LBD and their caregivers. A list 

of resources begins on page 37. 
2

The Basics of 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. 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 
3

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.

Understanding Terms

The terms used to describe Lewy body dementia (LBD) can be 

confusing. Doctors and researchers may use different terms to describe 

the same condition. In this booklet, the term Lewy body dementia is used 

to describe all dementias whose primary cause is abnormal deposits of 

Lewy bodies in the brain. 

The two types of LBD are:

• dementia with Lewy bodies, in which cognitive (thinking) symptoms 

appear within a year of movement problems

• Parkinson’s disease dementia, in which cognitive symptoms develop 

more than a year after the onset of movement problems

As LBD progresses, symptoms of both types of LBD are very similar.
4

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)

Microscopic image of a Lewy body.

Courtesy of Carol F. Lippa, MD, Drexel 

University College of Medicine.
5

Types of Lewy Body Dementia

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

Not-so-sweet dreams

In his mid-sixties, 

Bruce started 

having some mild 

confusion and vivid 

dreams that he 

physically acted 

out by thrashing around and even 

falling out of bed. His neurologist 

diagnosed REM sleep behavior 

disorder and mild cognitive changes.

Two years later, Bruce’s confusion had 

progressed to dementia, and he had 

slowness of movement. He was no 

longer able to live alone in his own 

home. His neurologist referred him for 

neuropsychological testing and, based 

on the results, changed his diagnosis to 

dementia with Lewy bodies.
6

• 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. 

Parkinson’s progresses

Betty is retired from 

the high school foodservices department 

and is devoted to her 

family, especially her 

three granddaughters.

At age 73, Betty developed a mild 

tremor in one hand, cramped handwriting, a shuffling gait, and a stooped 

posture. She was diagnosed with 

Parkinson’s disease. When she started 

having hallucinations 3 years later, her 

children became alarmed. Betty soon 

started having problems with confusion 

and visual-spatial orientation. She was 

diagnosed with Parkinson’s disease 

dementia.
7

Causes and Risk Factors

The precise cause of LBD is unknown, 

but scientists are learning more about 

its biology and genetics. For example, 

they know that an accumulation of Lewy 

bodies is associated with a loss of certain 

neurons in the brain that produce two 

important neurotransmitters, chemicals 

that act as messengers between brain cells. 

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. Age is considered the 

greatest risk factor. Most people who develop the disorder are over age 50.

Other known risk factors for LBD include the following:

• Diseases and health conditions—Certain diseases and health 

conditions, particularly Parkinson’s disease and REM sleep behavior 

disorder, are linked to a higher risk of LBD.

• Genetics—While having a family member with LBD may increase 

a person’s risk, LBD is not normally considered a genetic disease. A 

small percentage of families with dementia with Lewy bodies has a 

genetic association, such as a variant of the GBA gene, but in most 

cases, the cause is unknown. At this time, no genetic test can accurately 

predict whether someone will develop LBD. Future genetic research 

may reveal more information about causes and risk.

• Lifestyle—No specific lifestyle factor has been proven to increase one’s 

risk for LBD. However, some studies suggest that a healthy lifestyle—

including regular exercise, mental stimulation, and a healthy diet—

might reduce the chance of developing age-associated dementias. 
8

Common Symptoms

People with LBD may not have every LBD symptom, and the severity of 

symptoms can vary greatly from person to person. Throughout the course 

of 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 

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

• Dementia—Severe loss of thinking abilities that interferes with a 

person’s capacity to perform daily activities. Dementia is a primary 

symptom in LBD and usually includes trouble with visual and spatial 

abilities (judging distance and depth or misidentifying objects), 

planning, multitasking, problem solving, and reasoning. Memory 

problems may not be evident at first but often arise as LBD progresses. 

Dementia can also include changes in mood and behavior, poor 

judgment, loss of initiative, confusion about time and place, and 

difficulty with language and numbers. 

• Cognitive fluctuations—Unpredictable changes in concentration, 

attention, alertness, and wakefulness from day to day and sometimes 

throughout the day. A person with LBD may stare into space for 

periods of time, seem drowsy and lethargic, or sleep for several hours 

during the day despite getting enough sleep the night before. His or 

her flow of ideas may be disorganized, unclear, or illogical at times. 

The person may seem better one day, then worse the next day. These 

cognitive fluctuations are common in LBD but are not always easy for 

a doctor to identify.
Main Symptoms of Lewy Body Dementia

Symptom

Dementia 

with Lewy 

Bodies

Parkinson’s 

Disease 

Dementia

Dementia 4

Appears 

within a year 

of movement 

problems

4

Appears later 

in the disease, 

after movement 

problems

Movement problems 

(parkinsonism)

4

Appear at the 

same time as or 

after dementia

4

Appear before 

dementia 

Fluctuating cognition, attention, 

alertness 4 4

Visual hallucinations 4 4

REM sleep behavior disorder l

May develop 

years before 

other symptoms

l

May develop 

years before 

other symptoms

Extreme sensitivity to antipsychotic 

medications l l

Changes in personality and mood 

(depression, delusions, apathy) l l

Changes in autonomic (involuntary) 

nervous system (blood pressure, 

bladder and bowel control)

l l

4 Primary symptom 

l Common symptom

Source: Adapted from the Lewy Body Dementia Association, DLB and PDD Diagnostic 

Criteria, www.lbda.org/node/470
10

• Hallucinations—Seeing or hearing things that are not present. Visual 

hallucinations occur in up to 80 percent of people with LBD, often 

early on. They are typically realistic and detailed, such as images of 

children or animals. Auditory hallucinations are less common than 

visual ones but may also occur. Hallucinations that are not disruptive 

may not require treatment. However, if they are frightening or 

dangerous (for example, if the person attempts to fight a perceived 

intruder), then a doctor may prescribe medication.

Movement Symptoms

Some people with LBD may not experience significant movement 

problems for several years. Others may have them early on. At first, signs 

of movement problems, such as a change in handwriting, may be very mild 

and thus overlooked. Parkinsonism is seen early on in Parkinson’s disease 

dementia but can also develop later on in dementia with Lewy bodies. 

Specific signs of parkinsonism may include:

• muscle rigidity or stiffness

• shuffling gait, slow movement, or frozen 

stance

• tremor or shaking, most commonly at rest

• balance problems and falls

• stooped posture

• loss of coordination

• smaller handwriting than was usual for 

the person

• reduced facial expression

• difficulty swallowing 

• a weak voice
11

Sleep Disorders

Sleep disorders are common in people with LBD but are often undiagnosed. 

A sleep specialist can play an important role on a treatment team, helping to 

diagnose and treat sleep disorders. Sleep-related disorders seen in people with 

LBD may include:

• 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. Sometimes only the bed partner 

of the person with LBD is aware of these symptoms. REM sleep behavior 

disorder appears in some people years before other LBD symptoms. 

• Excessive daytime sleepiness—Sleeping 2 or more hours during the day. 

• Insomnia—Difficulty falling or staying asleep, or waking up too early.

• Restless leg syndrome—A condition in which a person, while resting, 

feels the urge to move his or her legs to stop unpleasant or unusual 

sensations. Walking or moving usually relieves the discomfort. 

Behavioral and Mood Symptoms

Changes in behavior and mood are possible in LBD. These changes may 

include:

• Depression—A persistent feeling of 

sadness, inability to enjoy activities, 

or trouble with sleeping, eating, and 

other normal activities.

• Apathy—A lack of interest in normal 

daily activities or events; less social 

interaction.
12

• Anxiety—Intense apprehension, uncertainty, or fear about a future 

event or situation. A person may ask the same questions over and over 

or be angry or fearful when a loved one is not present. 

• Agitation—Restlessness, as seen by pacing, hand wringing, an inability 

to get settled, constant repeating of words or phrases, or irritability.

• Delusions—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. Another delusion 

that may be seen in people with LBD is Capgras syndrome, in which the 

person believes a relative or friend has been replaced by an imposter.

• Paranoia—An extreme, irrational distrust of others, such as suspicion 

that people are taking or hiding things.

Other LBD Symptoms

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 
13

Diagnosis

It’s important to know which type of LBD a person has, both to tailor 

treatment to particular symptoms and to understand how the disease 

will likely progress. Clinicians and researchers use the “1-year rule” to 

diagnose which form of LBD a person has. If cognitive symptoms appear 

within a year of movement problems, the diagnosis is dementia with Lewy 

bodies. If cognitive problems develop more than a year after the onset of 

movement problems, the diagnosis is Parkinson’s disease dementia.

Regardless of the initial symptoms, over time people with LBD often 

develop similar symptoms due to the presence of Lewy bodies in the brain. 

But there are some differences. For example, dementia with Lewy bodies 

may progress more quickly than Parkinson’s disease dementia.

Dementia with Lewy bodies is often hard to diagnose because its early 

symptoms may resemble those of Alzheimer’s, Parkinson’s disease, or 

a psychiatric illness. As a result, it is often misdiagnosed or missed 

altogether. As additional symptoms appear, it is often easier to make an 

accurate diagnosis.

The good news is that doctors are increasingly able to diagnose LBD 

earlier and more accurately as researchers identify which symptoms help 

distinguish it from similar disorders. 
14

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 stay independent and 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 to adjust to 

the news. Talking about a diagnosis 

can help shift the focus toward 

developing a care plan. 

Who Can Diagnose LBD?

Many physicians and other 

medical professionals are not 

familiar with LBD, so patients 

may consult several doctors before 

receiving a diagnosis. Visiting a 

family doctor is often the first step 

for people who are experiencing 

changes in thinking, movement, or 

behavior. However, neurologists—

doctors who specialize in disorders 

of the brain and nervous system—generally have the expertise needed to 

diagnose LBD. Geriatric psychiatrists, neuropsychologists, and geriatricians 

may also be skilled in diagnosing the condition. 

If a specialist cannot be found in your community, ask the neurology department 

of the nearest medical school for a referral. A hospital affiliated with a medical 

What’s going on?

Janet, a 60-year-old 

executive secretary,

began having trouble 

managing the 

accounting, paperwork, and other 

responsibilities of her job. She became 

increasingly irritable, and her daughter 

insisted she see a doctor. Janet was 

diagnosed with depression and stressrelated problems. She was prescribed 

an antidepressant, but her thinking 

and concentration problems worsened.

When she could no longer function at 

work, her doctor diagnosed Alzheimer’s 

disease. A few months later, Janet 

developed a tremor in her right hand.

She was referred to a neurologist, who 

finally diagnosed Lewy body dementia.
15

school may also have a dementia or movement disorders clinic that provides 

expert evaluation. See the “Resources” section at the end of this booklet.

Tests Used to Diagnose LBD

Doctors perform physical and neurological examinations and various tests 

to distinguish LBD from other illnesses. An evaluation may include:

• Medical history and examination—A review of previous and current 

illnesses, medications, and current symptoms and tests of movement 

and memory give the doctor valuable information.

• Medical tests—Laboratory studies can help rule out other diseases and 

hormonal or vitamin deficiencies that can be associated with cognitive 

changes.

• Brain imaging—Computed 

tomography or magnetic resonance 

imaging can detect brain shrinkage or 

structural abnormalities and help rule 

out other possible causes of dementia 

or movement symptoms. 

• Neuropsychological tests—These 

tests are used to assess memory and 

other cognitive functions and can help identify affected brain regions.

There are no brain scans or medical tests that can definitively diagnose LBD. 

Currently, LBD can be diagnosed with certainty only by a brain autopsy 

after death. 

However, researchers are studying ways to diagnose LBD more accurately 

in the living brain. Certain types of neuroimaging—positron emission 

tomography and single-photon emission computed tomography—have 

shown promise in detecting differences between dementia with Lewy 

Magnetic resonance image of the brain.
16

bodies and Alzheimer’s disease. These methods may help diagnose certain 

features of the disorder, such as dopamine deficiencies. Researchers are also 

investigating the use of lumbar puncture (spinal tap) to measure proteins 

in cerebrospinal fluid that might distinguish dementia with Lewy bodies 

from Alzheimer’s disease and other brain disorders.

Other Helpful Information

It is important for the patient and a close family member or friend to tell the 

doctor about any symptoms involving thinking, movement, sleep, behavior, 

or mood. Also, discuss other health problems and provide a list of all current 

medications, including prescriptions, over-the-counter drugs, vitamins, and 

supplements. Certain medications can worsen LBD symptoms.

Caregivers may be reluctant to talk about a person’s symptoms when that 

person is present. Ask to speak with the doctor privately if necessary. The 

more information a doctor has, the more accurate a diagnosis can be. 
17

Treatment and Management

While LBD currently cannot be prevented or cured, some symptoms may 

respond to treatment for a period of time. A comprehensive treatment 

plan may involve medications, physical and other types of therapy, and 

counseling. Changes to make the home safer, equipment to make everyday 

tasks easier, and social support are also very important.

A skilled care team often can provide suggestions to help improve quality 

of life for both people with LBD and their caregivers.

Building a Care Team

After receiving a diagnosis, a person 

with LBD may benefit from seeing a 

neurologist who specializes in dementia 

and/or movement disorders. A good 

place to find an LBD specialist is at a 

dementia or movement disorders clinic 

in an academic medical center in your 

community. If such a specialist cannot be 

found, a general neurologist should be part of the care team. Ask a primary 

care physician for a referral.

A doctor can work with other types of healthcare providers. Depending on 

an individual’s particular symptoms, other professionals may be helpful:

• Physical therapists can help with movement problems through 

cardiovascular, strengthening, and flexibility exercises, as well as gait 

training and general physical fitness programs.

• Speech therapists may help with low voice volume, voice projection, 

and swallowing difficulties.

• Occupational therapists help identify ways to more easily carry out 

everyday activities, such as eating and bathing, to promote independence. 
18

• Music or expressive arts therapists may provide meaningful activities 

that can reduce anxiety and improve well-being.

• Mental health counselors can help people with LBD and their 

families learn how to manage difficult emotions and behaviors and 

plan for the future. 

Support groups are another valuable resource for both people with LBD

and caregivers. Sharing experiences and tips with others in the same 

situation can help people identify practical solutions to day-to-day 

challenges and get emotional and social support. To find a support group 

near you, see the “Resources” section.

The Role of Palliative Care

The goal of palliative care (comfort care) is to improve a person’s quality 

of life by relieving disease symptoms at any stage of illness. Palliative 

care can help manage LBD symptoms such as constipation, sleep 

disorders, and behavioral problems. Typically, a team of nurses, social 

workers, physical therapists, dieticians, and pharmacists works with 

doctors to:

• relieve troubling symptoms

• assist with medical decisions

• offer emotional and spiritual support

• coordinate care 

To find a palliative medicine specialist, ask a physician or local 

hospital for a referral, or consult CaringInfo, a service of the National 

Hospice and Palliative Care Organization. Visit www.caringinfo.org. 
19

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. Some symptoms can 

improve with nondrug treatments.

Cognitive Symptoms 

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 

behavioral symptoms. (See 

“Behavioral and Mood Problems” 

on page 22 for more information.) 

The U.S. Food and Drug 

Administration (FDA) approves 

specific drugs for certain uses 

after rigorous testing and review. 

The FDA has approved one 

Alzheimer’s drug, rivastigmine 

(Exelon®), to treat cognitive 

symptoms in Parkinson’s disease 

dementia. This and other 

Alzheimer’s drugs can have side 

effects such as nausea and diarrhea.

Getting treatment

Kamar, grandfather 

of five, was a highly 

educated executive 

with a background in 

the research, development, and field 

testing of aircraft engines. When he 

retired at 67, his wife, Manjit, noticed 

that he had problems with complex 

mental activities and that his executive

abilities had declined. He also had 

trouble with tasks involving a sequence 

of steps. His doctor prescribed a medication for the cognitive symptoms, 

which was helpful. It has been 6 years 

since Kamar was diagnosed, and Manjit

credits the medication for helping him 

have a better quality of life.
20

Movement Symptoms

LBD-related movement 

symptoms may be treated with 

a Parkinson’s medication called 

carbidopa-levodopa (Sinemet®, 

Parcopa®, Stalevo®). This drug 

can help improve functioning by 

making it easier to walk, get out of 

bed, and move around. However, 

it cannot stop or reverse the 

progress of the disease. 

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. If prescribed, carbidopa-levodopa usually 

begins at a low dose and is increased gradually. Other Parkinson’s 

medications are less commonly used in people with LBD due to a higher 

frequency of side effects. 

A surgical procedure called deep brain stimulation, which can be very 

effective in treating the movement symptoms of Parkinson’s disease, is 

not recommended for people with LBD because it can result in greater 

cognitive impairment. 

People with LBD may benefit from physical therapy and exercise. Talk with 

your doctor about what physical activities are best.

Sleep Disorders

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 

Trouble with balance

After major surgery 

at age 69, Cliff 

developed balance 

problems, and later 

his movements became stiff. Within a 

year, Cliff started having hallucinations 

and troubling side effects from antipsychotic medications. After an initial 

diagnosis of parkinsonism, he soon 

developed cognitive problems and was 

diagnosed with Lewy body dementia.

Cliff’s balance problems increased, 

and many falls prompted physical 

and occupational therapy, where he 

learned to use adaptive devices and 

techniques. Cliff’s wife, Kathy, discovered that putting his shoes on before 

getting him up helped improve his 

balance. The doctor prescribed a low 

dose of medication for parkinsonism, 

which also helped.
21

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 sleep partners. Clonazepam 

(Klonopin®), 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 may have difficulty falling asleep. If trouble 

sleeping at night (insomnia) persists, a physician may recommend a 

prescription medication to promote sleep. 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.

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.

Sleep and dementia 

Lee started having 

bad nightmares in 

his late sixties. Later 

he had problems 

communicating and 

would sit for long 

periods of time staring out the window.

His sleep problems worsened and, by 

age 73, were one of the most difficult 

symptoms of LBD. While asleep, Lee 

talked, his limbs jerked, and he thought 

his dreams were real. Upon waking, he 

thought he had been at work or out 

with friends. Medications prescribed for 

dementia and sleep issues helped both 

Lee and his wife get more rest.
22

Behavioral and Mood Problems

Behavioral and mood problems in people with LBD can arise from 

hallucinations or delusions. They may also be a result of pain, illness, 

stress or anxiety, and the inability to express frustration, fear, or feeling 

overwhelmed. The person may resist care or lash out verbally or physically. 

Caregivers must try to be patient and use 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.

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. Increased confusion can also occur. 

Certain medications used to treat LBD 

symptoms or other diseases may also 

cause behavioral problems. For example, 

some sleep aids, pain medications, 

bladder control medications, and drugs 

used to treat 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.

Not all behavioral problems are caused by illness or medication. A person’s 

surroundings—including levels of stimulation or stress, lighting, daily routines, 

and relationships—can lead to behavior issues. 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 
23

schedules, regular exercise, and adequate sleep. Large crowds or overly 

stimulating environments can increase confusion and anxiety.

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 become agitated or anxious. Caregivers can 

help by responding to the fears expressed instead of arguing or responding 

factually to comments that may not be true. By tuning in to the person’s 

emotions, caregivers can offer empathy and concern, maintain the person’s 

dignity, and limit further tension. 

Cholinesterase inhibitors may reduce hallucinations and other psychiatric 

symptoms of LBD. These medications 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 part of a long-term strategy. 

Coping with Behavioral Problems

Follow these steps in consultation with a physician to address 

behavioral problems:

• Rule out physical causes, like infection, pain, or other medical 

conditions.

• Review current prescription and over-the-counter medications.

• Look for environmental or social factors that contribute to 

behavioral problems.

• Consider treating with medications if necessary and watch for 

side effects.
24

Antidepressants can be used 

to treat depression and anxiety, 

which are common in LBD. 

Two types of antidepressants, 

called selective serotonin 

reuptake inhibitors and serotonin 

and norepinephrine reuptake 

inhibitors, are often well 

tolerated by people with LBD.

In some cases, antipsychotic 

medications are necessary to 

treat LBD-related behavioral 

symptoms to improve both 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 cause severe side effects and can worsen 

movement symptoms. 

If antipsychotics are prescribed, it is very important to use the newer kind, 

called atypical antipsychotics. These medications should be used at the 

lowest dose possible and for the shortest time possible to control symptoms. 

Many LBD experts prefer quetiapine (Seroquel®) or clozapine (Clozaril®, 

FazaClo®) to control difficult behavioral symptoms. 

Typical (or traditional) antipsychotics, such as haloperidol (Haldol®), 

generally should not be prescribed for people with LBD. They can cause 

dangerous side effects. 

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, low blood pressure that can cause dizziness and 

fainting. Simple measures such as leg elevation, elastic stockings, and, 

Seeing things

John, 58, started 

seeing small children 

outside the window 

who were not there.

Eventually, he began 

talking with some of 

these children, whom he thought were 

visiting the house. These hallucinations 

never scared or threatened John, and 

they seemed to give him companionship and entertainment. His wife Linda 

consulted a doctor, who said that since 

the hallucinations were not disruptive, no 

medication was needed. He advised Linda 

not to argue with her husband about 

whether or not the children were there.
25

when recommended by a doctor, increasing salt and fluid intake can help. 

If these measures are not enough, a doctor may prescribe medication.

Urinary incontinence (loss of bladder control) should be treated cautiously 

because certain medications used to treat this condition may worsen 

cognition or increase confusion. Consider seeing a urologist. Constipation 

can often be treated by exercise and changes in diet, though laxatives and 

stool softeners may be necessary. 

Warning About Antipsychotics 

People with LBD may have severe reactions to or side effects from 

antipsychotics, medications used to treat delusions, hallucinations, or 

agitation. These side effects include increased confusion, worsened 

parkinsonism, extreme sleepiness, and low blood pressure that can 

result in fainting (orthostatic hypotension). Caregivers should contact 

the doctor if these side effects continue after a few days.

Some antipsychotics, including olanzapine (Zyprexa®) and risperidone 

(Risperdal®), should be avoided, if possible, because they are more 

likely than others to cause serious side effects.

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 elderly people 

with dementia, including 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. 
26

People with LBD are often sensitive to prescription and over-the-counter 

medications for other medical conditions. Talk with your doctor about any 

side effects seen in a person with LBD.

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 in 

developing a plan for careful withdrawal. 

In addition, be sure to 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, since people with LBD can become 

delirious if these drugs are used too freely.

Vitamins and Supplements

The use of vitamins and supplements to treat LBD symptoms has not 

been studied extensively and is not recommended as part of standard 

treatment. Vitamins and supplements can be dangerous when taken 

with other medicines. People with LBD should tell their doctors 

about every medication they take. Be sure to list prescription and 

over-the-counter medicines, as well as vitamins and supplements.
27

Advice for People Living with 

Lewy Body Dementia

Coping with a diagnosis of 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.

Getting Help

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 and learn more about LBD. 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. 

You can say that you will need more help over time. By sharing your 

diagnosis with those closest to you, 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.
28

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. See the “Resources” section to find supportive 

services in your area.

Consider Safety 

The changes in thinking and movement that occur with LBD require 

attention to safety issues. Consider these steps:

• Fill out and carry the LBD Medical Alert Wallet Card (available 

at www.lbda.org/go/walletcard) 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, including 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 

modifying 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, and have your driving 

skills evaluated, if needed.

Plan for Your Future

There are many ways to plan ahead. Here are some things to consider: 

• 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. 
29

• Consult with an attorney who specializes in elder law or estate 

planning to help you write or update important documents, such as a 

living will, healthcare power of attorney, and will.

• Identify local resources for home care, meals, and other services before

you need them so you know whom to call when the time comes. 

• 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.

Find Enjoyment Every Day

It is important to focus on living with LBD. Your attitude can help you 

find enjoyment in daily life. Despite the many challenges and adjustments, 

you can have moments of humor, tenderness, and gratitude with the people 

closest to you. 

Make a list of events and activities you can still enjoy—then find a way 

to do them! For example, listening to music, exercising, or going out for 

a meal allows you to enjoy time with family and friends. If you can’t find 

pleasure in daily life, consult your doctor or another healthcare professional 

to discuss effective ways to cope and move forward. Let your family know 

if you are struggling emotionally so they can offer support.
30

Caring for a Person with 

Lewy Body Dementia

As someone who is 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 important 

actions you can take to adjust 

to your new roles, be realistic 

about your situation, and care 

for yourself. See the “Resources” 

section for more information.

Educate Others 

About LBD 

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 educational pamphlets and other materials with doctors, nurses, 

and other healthcare professionals who care for the person with LBD. 

A peaceful routine 

Susan realized that 

her mother, Estelle, 

could not manage 

a lot of stimulation.

Estelle easily became

agitated and confused, 

so Susan avoided taking her to places 

with large crowds or noisy environments.

Susan discovered that soothing music

calmed Estelle and used it to help her

relax when she grew anxious and irritable.

Establishing a routine with familiar faces 

in smaller groups has allowed Estelle 

to enjoy a better quality of life, despite 

the challenges caused by dementia 

with Lewy bodies.
31

Materials are available from the Lewy Body Dementia Association 

(see the “Resources” section).

• Teaching family and friends about LBD so they can better understand 

your situation. 

Prepare for Emergencies

People with LBD may experience sudden declines in functioning 

or unpredictable behaviors that can result in visits to the emergency 

room. Infections, pain, or other medical conditions often cause 

increased confusion or behavioral problems. Caregivers can prepare 

for emergencies by having available:

• a list of the person’s medications and dosages

• a list of the person’s health conditions, including allergies to 

medicines or foods

• copies of health insurance card(s)

• copies of healthcare advance directives, such as a living will

• contact information for doctors, family members, and friends

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. You must 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.
32

People approach challenges at varied paces. Some people want to learn 

everything possible and be prepared for every scenario, while others 

manage best by taking 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 may want to make each day count in personal ways and 

focus on creating enjoyable and meaningful moments. 

Care for Yourself 

As a caregiver, you play an essential role in the life of the person with 

LBD, so it is critical for you 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 help. One option is professional respite care, which 
33

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. 

Address Family Concerns

Not all family members may understand or accept LBD at the same time, 

and this can create conflict. Some adult children may deny that parents 

have 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 

with family meetings or provide 

guidance on how families can 

work together to manage LBD. 

Changing relationships

Diane’s husband Jim 

was diagnosed with 

Lewy body dementia 

2 years ago. Their 

son and daughter, 

who live across the 

country, thought that Diane was making too much of his illness. She asked 

them to fly out for a family meeting. A 

counselor who specializes in geriatrics 

gave the children helpful educational 

materials, and the family talked about 

the kind of emotional support Diane 

needs. They are on a better road to 

teamwork now.
Helping Children and Teens 

Cope with LBD

When someone has Lewy body dementia, it affects the whole 

family, including children and grandchildren. Children notice when 

something “doesn’t seem right.” Telling them in age-appropriate 

language that someone they know or love has been diagnosed with 

a brain disorder can help them make sense of the changes they see. 

Give them enough information to answer questions or provide 

explanations without overwhelming them.

Children and teens may feel a loss of connection with the person 

with LBD who has problems with attention or alertness. They may 

also resent the loss of a parent caregiver’s attention and may need 

special time with him or her. Look for signs of stress in children, 

such as poor grades at school, withdrawal from friendships, or 

unhealthy behaviors at home. Parents may want to notify teachers or 

counselors of the LBD diagnosis in the family so they can watch for 

changes in the young person that warrant attention. 
Here are some other ways parents can help children and teens adjust 

to a family member with LBD:

• Help them keep up with normal activities such as sports, clubs, 

and other hobbies outside the home. Suggest ways for kids to 

engage with the relative with LBD through structured activities 

or play. For example, the child or teen can make a cup of tea for 

the person with LBD. 

• Find online resources for older children and teens so they can 

learn about dementia and LBD. See the “Resources” section for 

more information.

It is important for families to make time for fun. Many challenges 

can be faced when they are balanced with enjoyable times. While 

LBD creates significant changes in family routines, children and 

teens will cope more effectively if the disorder becomes part of, 

but not all of, their lives. 
36

Research—The Road Ahead

There is a great deal to learn about LBD. At a basic level, why does alphasynuclein accumulate into Lewy bodies, and how do Lewy bodies cause 

the symptoms of LBD? It is also of increasing interest to the Alzheimer’s 

and Parkinson’s disease research communities. LBD represents an 

important link between these other brain disorders, and research into 

one disease often contributes to better understanding of the others. 

Many avenues of research focus on 

improving our understanding of LBD. 

Some researchers are working to identify 

the specific differences in the brain 

between dementia with Lewy bodies and 

Parkinson’s disease dementia. 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.

To find out more about clinical trials, talk with a doctor or visit the 

National Institutes of Health Web site at www.clinicaltrials.gov and 

www.nih.gov/health/clinicaltrials.
37

Resources

Federal Government

National Institute on Aging

Alzheimer’s Disease Education and Referral (ADEAR) Center

1-800-438-4380 (toll-free)

adear@nia.nih.gov

www.nia.nih.gov/alzheimers

National Institute of Neurological Disorders and Stroke

1-800-352-9424 (toll-free)

www.ninds.nih.gov 

MedlinePlus

National Library of Medicine 

www.medlineplus.gov

www.medlineplus.gov/spanish 

General Information 

Lewy Body Dementia Association

1-800-539-9767 (toll-free LBD Caregiver Link)

1-404-935-6444 (national office)

lbda@lbda.org

www.lbda.org

Michael J. Fox Foundation for Parkinson’s Research

1-800-708-7644 (toll-free)

www.michaeljfox.org

National Parkinson Foundation

1-800-473-4636 (toll-free helpline)

contact@parkinson.org

www.parkinson.org

Parkinson’s Disease Foundation

1-800-457-6676 (toll-free helpline)

info@pdf.org

www.pdf.org
38

Support Services and Resources

Eldercare Locator

This service of the U.S. Administration on Aging connects the public to 

community services for older adults and their families.

1-800-677-1116 (toll-free)

www.eldercare.gov

Family Caregiver Alliance

The Alliance provides information and referral, education, and other 

services to caregivers of people with chronic, disabling health conditions.

1-800-445-8106 (toll-free)

info@caregiver.org

www.caregiver.org

For Children and Teens

Although the following Alzheimer’s organizations are not specific to Lewy 

body dementia, their dementia-related resources and networks may be 

helpful for children and teens.

ADEAR Center Resources for Children and Teens

www.nia.nih.gov/alzheimers/resources-children-and-teens-aboutalzheimers-disease

Alzheimer’s Association Kids & Teens

1-800-272-3900 (toll-free)

www.alz.org/living_with_alzheimers_just_for_kids_and_teens.asp

Alzheimer’s Foundation of America (AFA) Teens

1-866-232-8484 (toll-free)

www.afateens.org 
39

Diagnosis, Treatment, and Research 

The Lewy Body Dementia Association (LBDA) maintains a list of its 

scientific and medical advisors. Many of these physicians see patients at their 

clinics or may make referrals to other specialists in your area. See 

www.lbda.org/content/lbda-scientific-advisory-council-sac. For general tips on 

finding a doctor, visit www.lbda.org/content/finding-doctor-diagnose-and-treat-lbd.

The Alzheimer’s Disease Education and Referral Center maintains a list of 

research centers funded by the National Institute on Aging at NIH where 

you may find medical specialists in Lewy body dementia: 

www.nia.nih.gov/alzheimers/alzheimers-disease-research-centers.

The American Academy of Neurology has a “find a neurologist” page on its 

website: http://patients.aan.com/findaneurologist.

The American Association for Geriatric Psychiatry has a physician finder on 

its website: http://gmhfonline.org.
40

Acknowledgments

The National Institute on Aging and the National Institute of Neurological 

Disorders and Stroke thank the following people for their contributions to the 

vision and creation of this booklet:

Lisa Snyder, MSW, LCSW

Director, Quality of Life Programs 

Shiley-Marcos Alzheimer’s Disease Research Center

University of California, San Diego 

Christina Gigliotti, PhD

Community Health Program Supervisor 

Shiley-Marcos Alzheimer’s Disease Research Center

University of California, San Diego

Angela Taylor

Director of Programs

Lewy Body Dementia Association

Scientific and Medical Reviewers from the LBDA 

Scientific Advisory Council

Douglas Galasko, MD

Co-Director, Shiley-Marcos Alzheimer’s Disease Research Center

University of California, San Diego

Howard Hurtig, MD

Chair, Department of Neurology

Pennsylvania Hospital

James Leverenz, MD

Director, Cleveland Lou Ruvo Center for Brain Health-Neurological Institute

Caregiver Reviewers

Nancy Archibald

Kathleen Burr

Paul Smith

Joy Walker
The National Institute on Aging (NIA) and the National Institute of 

Neurological Disorders and Stroke (NINDS) are part of the National 

Institutes of Health, the nation’s medical research agency—supporting 

scientific studies that turn discovery into health. 

NIA leads the federal government effort conducting and supporting 

research on aging and the health and well-being of older people. NIA’s 

Alzheimer’s Disease Education and Referral (ADEAR) Center offers 

information and publications on dementia and caregiving for families, 

caregivers, and professionals. 

NINDS is the nation’s leading funder of research on the brain and nervous 

system. The NINDS mission is to reduce the burden of neurological disease. 

For additional copies of this publication or further information, contact:

National Institute on Aging

Alzheimer’s Disease Education and Referral Center

www.nia.nih.gov/alzheimers

1-800-438-4380

National Institute of Neurological Disorders and Stroke

www.ninds.nih.gov 

1-800-352-9424
Publication No. 15-7907

September 2015