Stages and Progression of Lewy Body Dementia

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.

Stages of Lewy Body Dementia
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 disease
  • Frontotemporal dementia (FTD)
  • Huntington’s disease
  • Lewy body dementia (also known as dementia with Lewy bodies)
  • 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.

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

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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.
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