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What are the Lewy Body Dementia Stages?

Laura M. Sands
Updated Mar 03, 2024
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Lewy body dementia stages generally begin with motor impairment before progressing to more obvious signs of dementia, including forgetfulness, confusion, a loss of speech and a blank facial expression. Some who are stricken with this brain disorder may also experience hallucinations, sleep disorders and body tremors in the beginning stages. Symptoms vary among individuals with this progressive condition, with some who are in the early stages showing either no signs of dementia or exhibiting very fleeting symptoms. Individuals in the early stages also may experience symptoms similar to someone in the latter stages, such as incontinence and difficulty swallowing. Not every person with Lewy body dementia experiences the same symptoms; the stages of this condition, therefore, tend to vary from person to person and are not always predictable.

As a progressive brain disorder, the Lewy body dementia stages can occur quite rapidly. In its earliest stages, symptoms may fluctuate from day to day or even from moment to moment. A person may appear fine one moment, but suddenly experience an onset of extreme confusion the next.

Also evident in the early stages of this brain disorder is a disturbance known as REM Sleep Behavior Disorder, or RBD. Research has even indicated that RBD may be a precursor of dementia with Lewy bodies (DLB). Symptoms of this disorder include movement and talking during sleep. Upon waking, a person with DLB shows marked signs of confusion. This condition is due to alpha-synuclein or ubiquitin protein that has disturbed brain chemistry by gathering in the neurons.

Sometimes characterized as Parkinson’s disease dementia, the various Lewy body dementia stages often mimic symptoms of Parkinson’s disease. For example, a person’s gait may change as they begin to walk more slowly or even shuffle as they walk. Body tremors, a blank stare and drooling are also common at various stages, but occur more frequently during mid-stages.

During the latter stages, a person may have difficulty chewing and swallowing due to poor muscle control and may need to be fed intravenously. Individuals in this stage often become dehydrated or experience problems relating to malnutrition and constipation. Because the stages of Lewy body dementia are not necessarily gradual, these symptoms may present rather suddenly and even, seemingly, out of the blue.

Unlike other forms of dementia, DLB progresses rather rapidly. A person with this disorder usually dies within two to 20 years of beginning Lewy body dementia stages. The average lifespan of a person with this condition, however, typically ranges from five to seven years after the initial diagnosis.

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Laura M. Sands
By Laura M. Sands
Laura Sands, the founder of a publishing company, brings her passion for writing and her expertise in digital publishing to her work. With a background in social sciences and extensive online work experience, she crafts compelling copy and content across various platforms. Her ability to understand and connect with target audiences makes her a skilled contributor to any content creation team.
Discussion Comments
By anon1007112 — On Jun 03, 2022

It’s a very devastating disease to have to watch. My brother-in-law has been battling it for at least 7 years now, if not longer. He is very conscious of what is going on and I want to cry for him. He is strong and so is my sister, his wife. She has been so devoted to helping him going and I’m sure that is why he is still alive.

I would never wish this on anyone. May all who are struggling with LBD have all the hope that the world has to offer and know they are supported by people who understand and the love of god is with them.

By anon1003506 — On Jul 08, 2020

Lewy body dementia is a brutal disease.

By anon1001862 — On Jul 11, 2019

Please can someone help me? My dear hubby of 35 years was sectioned for his behaviours to me, neighbours and himself. Now he's in a home, paid for by local authorities until his death, but I am being told that he has the capacity to divorce me and put me out of the marital home, as he wishes to buy a flat in the community and live with community carers coming in. He was diagnosed with LBD in 2016 after a couple of years of strange ill health.

By anon996175 — On Jul 19, 2016

My husband has had it for a couple of years now. He is now 66. Plus he has seizures and now glaucoma. Seems like it will never end. I've become numb to it all and wonder what will take him first.

By anon995269 — On Apr 16, 2016

My husband is 70 years. old. He was diagnosed with Lewy Body Detention in 2005, 11 years ago! Looking back, I can see indications of it even earlier than that: depression, REM sleep disorder. This is a horrid disease; it has devastated our lives, physically, emotionally and financially. He has been in a nursing home for three years. One day I think the end is near and the next he is up walking around. It is like the nightmare that never ends.

LBD deserves more research dollars. It is not Alzheimer's and it is not Parkinson's, and providing Alzheimer's and Parkinson's medications to a Lewy Body patient in the early stages can have devastating effects.

By anon989581 — On Mar 12, 2015

My husband has been diagnosed with LBD at age 70. It is so hard to see this man who worked so hard all his life decline so quickly. He has little expression and has lost all social skills. He has also developed the tremors in both his hands and feet as well as his whole body at times. The early signs of this disease were delusions and hoarding. He also had problems with finding the right word to use. So difficult for him and our whole family.

By anon349050 — On Sep 22, 2013

My dad was diagnosed almost three years ago. He is 71 now. He has other health issues including Type II diabetes, heart failure, kidney failure, arthritis. He had all of those before his LBD diagnosis.

A year ago at Christmas time he became very ill with an infection in the fluid around his heart. My mom decided she could no longer care for him at home. He had been having hallucinations for a long time, and they were to the point he called police with the fear someone was in their home. Their bedroom is upstairs and it was too dangerous for him to use stairs.

Most information about LBD says five to seven years from onset or diagnosis if no other health problems, but with his other health problems, I don't know how long he will have left. He seems to have advanced to the next level this past week: blank staring, no conversation, not wanting to eat and he is very weak. I am not ready for him to die, but I don't want him to suffer either.

By julies — On Sep 27, 2012

My dad had DLB and the only positive thing I can say about it is that it did not linger very long. While you are never ready to lose someone you love, you also don't want to see them suffer. He was at the point where he couldn't function physically or emotionally. He lived for about 3 years after his initial diagnosis, and it was really hard for everyone in the family.

By myharley — On Sep 26, 2012

I have a good friend who was just put in a nursing home because of dementia symptoms. She is only in her mid 50's and this seems awfully young for this to be happening to her.

Come to find out, her mom had the same kind of problems, so it must be hereditary in some cases. I am not sure if this is diagnosed as Lewy body dementia, but the last time I visited her I really noticed a decline in her condition. She walked very slowly with a shuffle and rarely showed any emotion or facial expressions.

By Mykol — On Sep 26, 2012

I had heard of dementia, but had never heard of this particular kind of dementia until my grandma was diagnosed with it. Some of the first Lewy body dementia symptoms she had were becoming forgetful and confused.

At first it was hard to determine if this was just a normal part of aging, or if something more serious was going on. Once she started showing physical signs of shuffling when she walked, and couldn't sleep at night, we took her in for some testing.

It is hard to watch a loved one go through this process. Sometimes when I would visit her she was just as alert as she always had been. Other times she didn't know who I was. I never knew what state she was going to be in whenever I had the chance to visit with her.

By honeybees — On Sep 25, 2012
I think 20 years would be a long time to struggle with something like the Lewy body dementia disease. My aunt had Parkinson's disease for about 20 years, and it was sad to see the way this disease affected her.

I know the symptoms are somewhat similar and it can be just as hard for the caregivers and family members as it is for the person who has the disease.

Laura M. Sands
Laura M. Sands
Laura Sands, the founder of a publishing company, brings her passion for writing and her expertise in digital publishing...
Learn more
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