Brain & Nervous System Alzheimer's Dementia & Related Cognitive Disorders Stages and Progression of Lewy Body Dementia By Esther Heerema, MSW facebook twitter linkedin 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 Esther Heerema, MSW Medically reviewed by Medically reviewed by Claudia Chaves, MD on November 07, 2019 Claudia Chaves, MD, is board-certified in cerebrovascular disease and neurology with a subspecialty certification in vascular neurology. Learn about our Medical Review Board Claudia Chaves, MD Updated on November 19, 2019 Print Table of Contents View All Overview Disease Progression Stages If you or someone you know has recently been diagnosed with Lewy body dementia, you might be wondering what to expect as the disease progresses. Is there a fairly typical progression like Alzheimer's disease where it begins in early stages that are fairly uniform, then moves to middle stages and then to late stages? In Lewy body dementia, the answer is a bit more complicated. Verywell / JR Bee Understanding Lewy Body Dementia Lewy body dementia consists of two different conditions: dementia with Lewy bodies and Parkinson's disease dementia. The two share many of the same symptoms and may often be considered to be the same. However, one significant factor in how Lewy body dementia progresses is related to which disease is actually present. In Parkinson's disease dementia, the physical challenges are usually evident first, while in dementia with Lewy bodies, cognitive changes may appear earlier than, about the same time, or shortly after, the physical changes develop. Disease Progression Lewy body dementia does not progress the same way Alzheimer's disease does. It does have characteristics that often can be categorized as likely to occur in the earlier stages and other symptoms that are likely to develop as it progresses. However, a major difference in Lewy body dementia is that its symptoms can significantly fluctuate. One of the hallmarks of Lewy body dementia is the fluctuation of cognitive functioning. Oftentimes, a person may function fairly well one day and, on the next, be totally disengaged with a sudden and profound loss of memory. Understanding this variation in cognition can be helpful for caregivers because, without this knowledge, it can feel 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, while in truth, variation in functioning is typically a constant within each stage of the disease. Additionally, the rate of progression of Lewy body dementia varies significantly per person. 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're moving around, and others may develop urinary urgency and incontinence. Unlike Alzheimer's disease, memory is usually still pretty intact in the early stages, although confusion and some mild cognitive changes may be present. Middle Stages As Lewy body dementia progresses towards its middle stages, symptoms develop that more strongly resemble Parkinson's disease such as increased impairment of the body's motor functions and falls, difficulty with speech, impaired ability to swallow and increased paranoia and delusions. Cognition also continues to decline and these changes often include decreased attention and significant periods of confusion. Later Stages In the later symptoms of Lewy body dementia, extreme muscle rigidity and sensitivity to touch develops. Care becomes necessary for almost all activities of daily living. Speech is often very difficult and maybe whispered or absent. Lewy body dementia typically causes the individual to become very susceptible to pneumonia and other infections due to weakness, which may eventually be the cause of death. The average lifespan of a person newly diagnosed with Lewy body dementia is between five to seven years. However, there are those who have lived up to 20 years, according to the not-for-profit Lewy Body Dementia Association. A Word From Verywell Learning what to expect when coping with Lewy body dementia can be helpful; however, one of the things to expect is actually the unexpected in Lewy body dementia. The unpredictability of Lewy body dementia is one of its characteristics, and knowing that this is normal might be reassuring to both the individual living with the disease, as well as his family and caregivers. 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 Article 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. 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 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.