Lewy body dementia stages include the first stage, middle stage, and end stage. The disease progresses as protein clumps called Lewy bodies build up in the brain and cause cognitive impairment.

The buildup of Lewy bodies causes some people to have hallucinations in the early stages of the condition. As the condition progresses to the middle and later stages, a person may become confused and develop difficulties with movement.

Doctors can sometimes mistake the early stages of this condition for Alzheimer’s disease because the symptoms may be similar. However, unlike people with other types of dementia, those with Lewy body dementia can experience fluctuating symptoms.

This article discusses each stage of Lewy body dementia, including symptoms and treatment.

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The buildup of Lewy bodies in the brain can cause a range of symptoms, including difficulties with thinking, movement, balance, behavior, and mood.

These symptoms can change as the disease progresses from the early stage to the later stages. The symptoms relate to the areas of the brain that experience damage due to protein buildup, and the sequence of damaged areas can vary.

Lewy body dementia stages include first, middle, and end or late.

First stage

Up to 80% of people with Lewy body dementia experience visual hallucinations in the first stage of the condition. This means they see things that are not there. Less commonly, people may hear or smell things that are not there.

Some people may experience difficulties with movement in the early stages of the condition. However, these changes can be mild and hard to notice, such as a change in handwriting.

People with Lewy body dementia commonly experience REM sleep behavior disorder (RBD), which can begin several years before other symptoms.

A person with RBD acts out their recurrent dreams by performing movements that mimic the content of the dreams. Doctors also associate RBD with abnormal REM sleep.

These dreams commonly involve chasing or attacking, so the person or their bed partner may sustain injuries as a result of limb movements.

Other people may experience other sleep disorders in the first stage of Lewy body dementia, including:

Middle stage

As Lewy body dementia progresses, a person may experience memory problems.

This is different from Alzheimer’s disease dementia, in which people tend to experience memory problems early on in the condition.

A person might develop fluctuating concentration, attention, alertness, and wakefulness. This can change from day to day and even during the same day.

Their ideas appear disorganized, unclear, or illogical. This feature of the condition also sets it apart from Alzheimer’s disease and helps doctors distinguish the two conditions.

A person’s cognitive (thinking) abilities continue to decline during the middle stage of Lewy body dementia as they develop a shorter attention span and significant periods of confusion.

As their symptoms worsen, a person may also experience mental and emotional difficulties such as:

  • depression
  • lack of interest in their usual activities or events
  • less social interaction
  • anxiety, anger, or fear
  • agitation or restlessness, which they may demonstrate through:
    • pacing
    • hand wringing
    • an inability to settle
    • repetition of words or phrases
    • irritability
  • delusions
  • paranoia

End stage

For some people, major difficulties with movement do not develop until they have had the condition for several years. These problems can include:

  • stiff or rigid muscles
  • slow movement, shuffling, or a frozen stance
  • tremor or shaking, usually when not moving
  • balance problems and falls
  • stooped posture
  • loss of coordination
  • a decrease in the size of handwriting
  • a decrease in facial expressions
  • trouble swallowing
  • weak voice

Major changes in the nervous system can also occur in Lewy body dementia. Specifically, these changes can affect the regulation of the automatic functions of the heart, glands, and muscles.

Doctors cannot say how long each stage of Lewy body dementia will last for a particular person. For instance, the end stage can last between 2 months and 1 year.

Learn more about dementia.

Doctors and researchers use many methods to measure and define dementia. For example, they use the CDR scale to determine whether a person has dementia:

  • 0 = no dementia
  • 0.5 = mild cognitive impairment or very mild dementia
  • 1 = mild dementia
  • 2 = moderate dementia
  • 3 = severe dementia

The CDR scorecard allows doctors to rate the effect of dementia on several aspects of a person’s cognitive health, including:

  • memory
  • orientation
  • judgment and problem-solving
  • community affairs
  • home and hobbies
  • personal care

The signs and symptoms of Alzheimer’s disease and Lewy body dementia may look similar in the first stage. Many people may start experiencing symptoms of Alzheimer’s disease that later change to symptoms of Lewy body dementia.

Additionally, symptoms of Lewy body dementia do not always fit neatly into one stage or the other. But in general, symptoms may progress as follows:

Symptoms in the first stage

  • hallucinations, most commonly visual
  • minor movement differences, such as changes in handwriting
  • sleep disorders

Symptoms in the middle stage

  • fluctuations in concentration, attention, alertness, and wakefulness
  • disorganized, unclear, or illogical thinking
  • shorter attention span
  • significant confusion
  • depression
  • apathy
  • anxiety
  • agitation
  • delusions
  • paranoia

Symptoms in the end stage

  • stiff or rigid muscles
  • shuffling, slow movement, or a frozen stance
  • tremor or shaking, usually when not moving
  • balance problems and falls
  • stooped posture
  • loss of coordination
  • a decrease in the size of handwriting
  • a decrease in facial expressions
  • trouble swallowing
  • weak voice
  • changes in body temperature
  • problems with blood pressure

A person who receives a diagnosis of Lewy body dementia and their loved ones can work closely with a doctor to decide on an appropriate treatment plan. Some medications can worsen some symptoms, so working with an experienced healthcare professional is important.

If a doctor diagnoses a sleep disorder in the first stages of Lewy body dementia, they may prescribe medications to help address the problem. Doctors may also prescribe the seizure medication clonazepam at a very low dose if a person experiences RBD.

Additionally, cholinesterase inhibitors may help reduce hallucinations in the first stage as well as apathy and delusions in the middle stage of Lewy body dementia. People who experience depression or anxiety in this stage of the condition may also benefit from taking antidepressants.

In the later stages of the condition, doctors may prescribe the Parkinson’s disease medication carbidopa-levodopa to treat any major movement difficulties. Because this medication can cause significant side effects, doctors do not tend to give it to people who are experiencing only mild movement challenges in the early stages of Lewy body dementia.

Support groups allow people to share experiences and advice with others who are in the same situation while receiving emotional and social support.

The Lewy Body Dementia Resource Center may be a good place for people to start. This nonprofit organization aims to raise awareness of the condition among medical professionals and the general public while offering support and services to people with Lewy body dementia and their caregivers.

The stages of Lewy body dementia feature different symptoms, but some may overlap.

For instance, in the first stage, people commonly experience hallucinations and sleep disorders. In the middle stage, a person can develop symptoms such as fluctuating concentration, significant confusion, and depression.

The end stage of Lewy body dementia can last between 2 months and 1 year, and the symptoms might include significant difficulties with movement, urinary incontinence, and reduced facial expressions.

Doctors treat the condition depending on a person’s symptoms. For instance, they may prescribe medications to help with sleep disorders, depression, movement challenges, or hallucinations.