Brain & Nervous System Alzheimer's Dementia & Related Cognitive Disorders What is Lewy Body Dementia? What to expect as the condition progresses By Esther Heerema, MSW Updated on September 20, 2023 Medically reviewed by Smita Patel, DO Print Table of Contents View All Table of Contents Symptoms Stages Causes Diagnosis Treatment Prognosis Tips for Caregivers Lewy body dementia (LBD) is a type of dementia caused by abnormal protein deposits in the brain, called Lewy bodies. The deposits cause chemical changes in the brain, leading to problems with thinking, movement, balance, behavior, and mood. LBD is one of the most common causes of dementia, affecting an estimated 1.4 million people in the U.S. This article explains the symptoms, causes, and progression of Lewy body dementia, along with how it is diagnosed and treated. Verywell / JR Bee Symptoms of Lewy Body Dementia Lewy body dementia symptoms include: Memory impairment and confusion Difficulty solving problems Dizziness and falls Erratic body movements Sleep disorders such as REM sleep behavior disorder Hallucinations and delusions As many as 80% of people with Lewy body dementia experience vivid, well-formed visual hallucinations. They may, for example, see people who aren't there or witness the transformation of an object into something entirely different. About 30% also have auditory hallucinations. Complications Lewy body dementia can affect the autonomic nervous system, which regulates how the heart, lungs, and other organs function. This can lead to symptoms such as: Sensitivity to temperature extremes Blood pressure changes Dizziness Fainting Falls Constipation Urinary incontinence Sexual dysfunction Diminished ability to smell Other Forms of Dementia Lewy body dementia symptoms are so similar to those of other forms of dementia that LBD can be misdiagnosed. This might make more sense when you consider that there are many types of dementia. It may help to think of dementia as one large (and cruel) "umbrella" that slowly robs people of their ability to think, talk, remember, and use their bodies. Many diseases crowd underneath this umbrella, including: Alzheimer’s disease Frontotemporal dementia (FTD) Huntington’s disease Lewy body dementia Mixed dementia Parkinson’s disease dementia Vascular dementia Of these, Alzheimer's is the most common. And it shares many symptoms with LBD, which adds to the confusion. LBD, Alzheimer's, and Parkinson's Disease LBD can have the memory loss symptoms associated with Alzheimer's disease, in addition to movement and balance problems, trouble sleeping at night, and hallucinations. Memory loss can fluctuate greatly with LBD, while Alzheimer's tends to worsen more steadily and result in greater memory loss.There is an overlap of symptoms between LBD and Parkinson's disease. However, in LBD, cognitive symptoms usually show up before movement problems. It's the opposite for those with Parkinson's disease, with movement problems appearing before memory problems. What Are the Stages of Lewy Body Dementia? Lewy body dementia usually takes five to eight years to progress from diagnosis to death. Some cases may progress faster, while others may progress much more slowly. Regardless of the speed of progression, the timeline of Lewy body dementia is usually distinguished by early, middle, and late stages. Unlike other forms of dementia, Lewy body dementia does not always progress predictably through each stage. This makes it impossible to know for sure how many years each stage will last or how slowly or quickly the disease will progress. Early Stages In general, the earlier stages of Lewy body dementia may involve hallucinations or other distortions of reality such as delusions, restlessness, acting out dreams during sleep (called REM sleep disorder), and some movement difficulties. Some people may appear to "freeze" or get stuck as they move about. Others may develop urinary urgency and incontinence. Unlike Alzheimer's disease, memory is usually still fairly intact in the early stages. But confusion and some mild cognitive changes may be present. Middle Stages As Lewy body dementia progresses, symptoms develop that more strongly resemble Parkinson's disease. These symptoms include falls, increased problems with motor functions, difficulty with speech, swallowing problems, and greater paranoia and delusions. Cognition also continues to decline, with shorter attention and significant periods of confusion. Later Stages In the later stages of Lewy body dementia, extreme muscle rigidity and sensitivity to touch develop. People need assistance with almost all activities of daily living. Speech is often very difficult and may be whispered. Some people stop talking altogether. Lewy body dementia typically causes the individual to become very susceptible to pneumonia and other infections because of weakness. It is impossible to predict how long it will take to progress through any stage of Lewy body dementia. According to one study, end-stage Lewy body dementia could last between two months and one year. For some people, however, death may occur quickly and unexpectedly. One of the hallmarks of Lewy body dementia is the fluctuation of cognitive functioning. Often, a person may function fairly well one day and be totally disengaged with a profound loss of memory the next.This fluctuation can also make it feel like the person is moving back and forth from one stage to another. In reality, the variation in functioning is a normal feature within each stage of the disease. Causes of Lewy Body Dementia The exact cause of LBD is unknown, but scientists are learning more about its biology and genetics. The accumulation of Lewy bodies in the brain interferes with the production of the neurotransmitters dopamine and acetylcholine, which leads to problems with muscle movements, memory, thinking, and processing information. Risk Factors Factors that increase the risk of developing LBD include: Age (typically 50 and older)Having a family member with LBDHaving certain health conditions, including Parkinson's disease or REM sleep behavior disorder Diagnosing Lewy Body Dementia Lewy body dementia is hard to diagnose because the early symptoms can resemble those of Alzheimer's disease, Parkinson's disease, or a psychiatric illness. It may involve a team of healthcare specialists, including your primary care provider, a neurologist, and a geriatric psychiatrist. The diagnosis is based on your symptoms and ruling out other conditions. Tests may include: Physical and neurological examCognitive assessment to assess memory and thinking skillsBlood tests to rule out other health conditionsBrain imaging testsSleep study How Is Lewy Body Dementia Treated? There's no cure for Lewy body dementia, but some symptoms may improve for a period of time with treatment. An LBD treatment plan may involve medications, physical or other types of therapy, and counseling. The healthcare team may make suggestions for home safety updates and identify any equipment that might make everyday tasks easier. What Is the Prognosis for Lewy Body Dementia? Lewy body dementia cannot be prevented or cured. The life expectancy of people with LBD varies, but people typically live about five to seven years after diagnosis. Tips for Caregivers As a caregiver for someone with LBD, you will take on many responsibilities, but you don't have to do them alone. There are many sources of help available, such as adult day centers, respite care, and online and in-person support groups. Some actions you can take include: Advocate for your loved one. Inform healthcare staff of the LBD diagnosis and medication sensitivities; request that the person's neurologist be consulted before giving any drugs to control behavior problems. Be prepared. Keep a list of the person's medications and dosages, health conditions, and allergies to medications. Keep copies of insurance cards, healthcare advance directives, and contact information for doctors, family members, and friends handy. Adjust expectations. The biggest thing to expect is the unexpected. The unpredictability of Lewy body dementia is one of its characteristics. Knowing this can be reassuring to both the individual living with the disease as well as family and caregivers. Take time for yourself. All caregivers need time away from caregiving responsibilities to maintain their own health and well-being. Learn to accept help when it's offered, and learn to ask family, friends, and agencies—such as home care and adult day care—for support. Summary Lewy body dementia is one of many types of dementia (with Alzheimer's being the most common). A major difference with Lewy body dementia is that its symptoms can fluctuate significantly from day to day. It is marked by early, middle, and late stages. A team of healthcare providers can diagnose LBD, but there is no cure. Life expectancy varies but is typically five to seven years after diagnosis. 14 Sources Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy. National Institute on Aging. What is Lewy body dementia? Causes, symptoms, and treatments. Lewy Body Dementia Association. 10 things you should know about LBD. Auning E, Rongve A, Fladby T, et al. Early and presenting symptoms of dementia with Lewy bodies. Dement Geriatr Cogn Disord. 2011;32(3):202-8. doi:10.1159/000333072 The Michael J. Fox Foundation for Parkinson's Research. What Richard sees: Insight into Lewy body dementia hallucinations. Eversfield CL, Orton LD. Auditory and visual hallucination prevalence in Parkinson's disease and dementia with Lewy bodies: a systematic review and meta-analysis. Psychol Med. 2019;49(14):2342-2353. doi:10.1017/S0033291718003161 Alzheimer's Association. Lewy body dementia. Graff-Radford J, Lesnick TG, Boeve BF, et al. Predicting survival in dementia with Lewy bodies with hippocampal volumetry. Mov Disord. 2016;31(7):989-94. doi:10.1002/mds.26666 Mckeith IG, Boeve BF, Dickson DW, et al. Diagnosis and management of dementia with Lewy bodies: Fourth consensus report of the DLB Consortium. Neurology. 2017;89(1):88-100. doi:10.1212/WNL.0000000000004058 Leggett AN, Zarit S, Taylor A, Galvin JE. Stress and burden among caregivers of patients with Lewy body dementia. Gerontologist. 2011;51(1):76-85. doi:10.1093/geront/gnq055 Manabe T, Mizukami K, Akatsu H, et al. Prognostic factors related to dementia with Lewy bodies complicated with pneumonia: An autopsy study. Intern Med. 2016;55(19):2771-2776. doi:10.2169/internalmedicine.55.6868 Armstrong MJ, Alliance S, Taylor A, Corsentino P, Galvin JE. End-of-life experiences in dementia with Lewy bodies: qualitative interviews with former caregivers. PLoS One. 2019;14(5):e0217039. doi:10.1371/journal.pone.0217039 National Institute on Aging. Diagnosing Lewy body dementia: for professionals. Medline Plus. Dementia with Lewy bodies. National Institute on Aging. Caring for a person with Lewy body dementia. Additional Reading Alzheimer's Association. Dementia With Lewy Bodies. Lewy Body Dementia Association. Diagnosis. Lewy Body Dementia Association. The Role of Palliative and Hospice Care in Lewy Body Dementia. Lewy Body Dementia Association. Caregiver FAQ. University of Florida. AlzOnline. Lewy Body Dementia. By Esther Heerema, MSW Esther Heerema, MSW, shares practical tips gained from working with hundreds of people whose lives are touched by Alzheimer's disease and other kinds of dementia. 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