Stages of Lewy Body Dementia

What to expect as the condition progresses

Lewy body dementia (LBD) progresses in stages, similar to Alzheimer’s disease. It's what happens during these stages that makes the two conditions different.

This article explains the progression of Lewy body dementia as it proceeds through three stages.

Stages of Lewy Body Dementia
Verywell / JR Bee

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.

How Lewy Body Dementia Progresses

Lewy body dementia and Alzheimer's disease are both forms of dementia. Lewy body dementia, however, 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.

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:

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.

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 Word From Verywell

Learning what to expect can be helpful in coping with Lewy body dementia. 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 symptoms
    • Problems with thinking and memory that resemble Alzheimer's disease
    • Hallucinations, delusions, and other psychiatric symptoms
  • 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.

  • 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, dizziness, fainting, falls, constipation, urinary incontinence, sexual dysfunction, and a diminished ability to smell.

11 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.
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  6. Alzheimer's Association. Lewy body dementia.

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  8. Lewy Body Dementia Association. 10 things you should know about LBD.

  9. National Institute on Aging. What is Lewy body dementia? Causes, symptoms, and treatments.

  10. The Michael J. Fox Foundation for Parkinson's Research. What Richard sees: Insight into Lewy body dementia hallucinations.

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Additional Reading

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.