Lewy body dementia (LBD) stages are similar to those seen in other dementias, but this condition is known to have unique progression patterns that can make disease predictability challenging.

LBD is the term used for two types of dementia caused by Lewy bodies: Parkinson’s disease dementia and dementia with Lewy bodies.

Both of these conditions feature cognitive impairment from the buildup of protein clumps in the brain known as Lewy bodies, named after the German neurologist, Dr. Friederich Lewy.

While it’s similar to other dementias, such as Alzheimer’s disease, LBD can feature a more aggressive cognitive decline and fluctuating symptoms that set it apart.

LBD develops over time as protein bundles accumulate in your brain. This gradual onset is typical of all dementias and can be categorized into three stages, based on the symptoms you’re experiencing.

Early stage

Early stage LBD might not be obvious. It can mimic natural age-related cognitive changes. Unlike other dementias, early stage LBD is associated with greater cognitive challenges related to multitasking, as opposed to memory decline.

Visual hallucinations can also be a common early stage symptom in LBD. These experiences may be minor, such as seeing undefined shapes or colors, or you might have more developed hallucinations that include people, animals, or objects.

Rarely, you may experience other types of hallucinations related to smells or sounds.

Early stage changes to your motor function, such as tremors, rigidity, or difficulty walking, are also seen in LBD.

Middle stage

The middle stage of dementia is defined by clear symptoms that can no longer be attributed to age, stress, or other circumstances.

At this time, you may need help with personal care or might start noticing behavioral changes such as repeating questions or wandering.

In LBD, sleep disorders are common. Rapid eye movement (REM) sleep behavior disorder is a feature that sets LBD apart from other dementias. It’s a condition that causes you to act out while dreaming, sometimes talking, flailing, or falling out of bed.

Late stage

In late stage dementia, a state of dependency has been reached. You may need full or partial assistance during daily life because symptoms impair your physical and mental function.

In LBD, behavioral symptoms become worse as the condition progresses. In addition to classic dementia memory symptoms, you may notice significant changes throughout your body due to inadequate nervous system regulation.

Fluctuating cognition

One of the most defining characteristics of LBD is the presence of fluctuating cognition. Unlike in other dementias, cognitive changes in LBD can come and go, occurring through all its stages.

One day may seem filled with disorganized, illogical thoughts, for example, while the next day, you’ve regained clarity.

Fluctuating cognition is one reason why it can be difficult to stage LBD.

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In the clinical setting, your symptoms may be rated on the global Clinical Dementia Rating (CDR) scale instead of by development stage.

The CDR scores six measures, including personal care, home life, community, problem-solving, orientation, and memory. Symptoms in each category are scored on a 5-point scale to determine an overall CDR:

  • CDR 0 — none present
  • CDR 0.5 — questionable or extremely mild
  • CDR 1 — mild
  • CDR 2 — moderate
  • CDR 3 — severe

Other rating scales also exist that might score dementia using different criteria. For example, the Clinical Global Impressions – Severity of Illness Scale uses a 7-point scale.

LBD symptoms can span multiple stages. For example, it’s possible to experience mood changes throughout LBD. Some symptoms may be more likely to appear in certain stages than others.

Earlyvisual hallucinations
motor changes
task-oriented cognitive decline
memory loss
fluctuating cognition
Middlecommunication challenges
sleep disorders
repetitive questioning
confusion, even in familiar settings
memory loss
trouble walking
muscle tremors
posture rigidity
reduced facial expressions
visual hallucinations
cognitive fluctuation
mood fluctuations
severe memory loss
sleep disorders
motor dysfunction/limited ability to move
inability to communicate
temperature sensitivity
urinary incontinence
diminished sense of smell
sexual dysfunction
blood pressure changes
fluctuating cognition

There’s a lot to know about LBD stages and what to expect as this condition progresses.

How quickly does Lewy body dementia progress?

LBD is often more aggressive than other types of dementia. On average, the time between diagnosis and end of life is 5 to 8 years.

For some people, LBD may progress as rapidly as 2 years or take upward of 20 years to reach the late stage.

What are the final stages of Lewy body dementia?

As in all dementia, late stage LBD involves significant loss of independent function, behavioral changes, and major memory deficits.

According to a 2019 report on end-of-life experiences of people with LBD, researchers note the most common cause of dementia-related death was “failure to thrive,” a term that represents collective symptoms of unresponsive weight loss, appetite decline, social isolation, and cognitive impairment.

When is the right time to consider hospice care?

Under Medicare criteria, you may qualify for hospice services for dementia when the end of life is likely within 6 months.

This is determined by reaching a rank of “7” on the Functional Assessment Staging (FAST) scale and by the presence of existing comorbid conditions such as pneumonia or sepsis.

Stage 7 on the FAST scale indicates you’re mostly unable to communicate, can’t hold your own head up, are unable to smile, and can’t sit up on your own.

Some research suggests atrophy to the hippocampus, which is visible with diagnostic imaging, may help predict shorter survival rates in LBD.

Can Lewy body dementia go into remission?

LBD can’t be cured, but cognitive fluctuation can cause temporary remission that may last hours or days.

Get involved in the hunt for a cure

Currently, there’s no way to prevent or cure LBD, but research is ongoing. Participating in clinical trials is one way to help explore potential therapies — for yourself and for future generations.

You can find LBD clinical trials by visiting:

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LBD stages include early, middle, and late. Unlike other dementias, symptoms in early LBD can be less about memory and more about other cognitive functions, such as multitasking.

It’s also common to experience hallucinations in early stage LBD and prominent sleep disorders as the condition progresses.

There’s no cure for this condition, but even during its late stage, cognitive symptoms may abruptly go into remission due to what’s known as fluctuating cognition. Clinical research to find a cure is ongoing.