Stages of Lewy Body Dementia

What to Expect After the Diagnosis

Physician Explaining Lewy Body Dementia
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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.

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.

Stages of Lewy Body Dementia

Additionally, the rate of progression of Lewy body dementia varies significantly per person.

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 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 may be 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 live 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 Levy 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.

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