Brain & Nervous System Alzheimer's Dementia & Related Cognitive Disorders Stages and Progression of Lewy Body Dementia By Esther Heerema, MSW Esther Heerema, MSW Facebook LinkedIn Twitter 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. Learn about our editorial process Updated on February 06, 2022 Medically reviewed Verywell Health articles are reviewed by board-certified physicians and healthcare professionals. These medical reviewers confirm the content is thorough and accurate, reflecting the latest evidence-based research. Content is reviewed before publication and upon substantial updates. Learn more. by Huma Sheikh, MD Medically reviewed by Huma Sheikh, MD Facebook LinkedIn Twitter Huma Sheikh, MD, is a board-certified neurologist, specializing in migraine and stroke, and affiliated with Mount Sinai of New York. Learn about our Medical Expert Board Print If you or someone you know has recently been diagnosed with Lewy body dementia (LBD), you might be wondering what to expect as the disease progresses. Like with Alzheimer's disease, Lewy body dementia is marked by early, middle, and later stages. It's what happens during these stages that makes the two different. This article explains the stages and progression of Lewy body dementia as it proceeds through three stages. Verywell / JR Bee Understanding Lewy Body 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 diseaseFrontotemporal dementia (FTD)Huntington’s diseaseLewy body dementia (also known as dementia with Lewy bodies)Mixed dementiaParkinson’s disease dementiaVascular dementia Of these, Alzheimer's is the most common. And it shares many symptoms with LBD, which adds to the confusion. But there are certain differences between Alzheimer's and LBD that can help clarify a diagnosis. People with Alzheimer's usually suffer greater memory loss than those with LBD. Otherwise, people with LBD are more likely to: Contend with dizziness and falls Deal with REM sleep disorder Experience more erratic body movements Report more hallucinations and delusions Struggle with incontinence With dementia with Lewy bodies, cognitive changes may appear earlier than, about the same time, or shortly after any physical changes surface. Disease Progression Lewy body dementia progresses somewhat differently from Alzheimer's disease. Notably, the symptoms—especially memory loss—can fluctuate greatly with LBD. Alzheimer's tends to worsen more steadily. 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. Understanding this variation in cognition can be helpful for caregivers. Without this knowledge, it may seem like the person with Lewy body dementia is "forgetting" on purpose. 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. In addition, the speed with which Lewy body dementia progresses varies greatly from one person to the next. Stages of Lewy Body Dementia Lewy body dementia can be distinguished by early, middle, and late stages: 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 occurring. Later Stages In the later stages of Lewy body dementia, extreme muscle rigidity and sensitivity to touch develops. People need assistance with almost all activities of daily living. Speech is often very difficult and maybe 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. The average lifespan of a person newly diagnosed with Lewy body dementia is between five and eight years. However, there are those who have lived up to 20 years after diagnosis. 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. It is marked by early, middle, and late stages. A Word From Verywell Learning what to expect when coping with Lewy body dementia can be helpful. But 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. Frequently Asked Questions How does Lewy body dementia start? There are three ways that Lewy body dementia (LBD) initially shows up:Parkinson's disease movement symptomsProblems with thinking and memory that resemble Alzheimer's diseaseHallucinations, delusions, and other psychiatric symptoms Learn More: Delusions in Lewy Body Dementia How common are hallucinations in Lewy body dementia? 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% of patients also have auditory hallucinations. Learn More: Treating Hallucinations in Dementia How does Lewy body dementia affect physical health? 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 and dizziness, fainting and falls, constipation, urinary incontinence, sexual dysfunction, and a diminished ability to smell. Was this page helpful? Thanks for your feedback! When it comes to Alzheimer's, the MIND diet has shown promise in reducing risk and promoting brain health. Sign up for our Alzheimer’s and Dementia Newsletter and get your free recipe guide today. Sign Up You're in! Thank you, {{form.email}}, for signing up. There was an error. Please try again. What are your concerns? Other Inaccurate Hard to Understand Submit 10 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. Alzheimer's Association. Lewy body dementia. 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 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 National Institute on Aging. What is Lewy body dementia? Causes, symptoms, and treatments. Lewy Body Dementia Association. 10 things you should know about LBD. National Institute on Aging. What is Lewy body dementia? Causes, symptoms, and treatments. 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 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.