Lewy Body Dementia Stages: How Symptoms Progress

Medically Reviewed By Shilpa Amin, M.D., CAQ, FAAFP

Like other dementia types, Lewy body dementia (LBD) worsens over time. Understanding the stages of LBD can help families prepare care plans to manage LBD symptoms. Early stage symptoms of Lewy body dementia (LBD) commonly include mild cognitive decline that may go unnoticed. As LBD progresses, symptoms become more noticeable, including increased forgetfulness and psychological symptoms, such as visual hallucinations.

By the late stages of LBD, people often become unable to live independently due to the loss of cognitive and physical abilities.

This article explains the stages of LBD and how symptoms commonly progress. It looks at the progression of cognitive, psychological, and physical symptoms of LBD.

What are the stages of Lewy body dementia?

Senior woman looking at book with assistance of younger woman
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There are no specific clinical stages of Lewy body dementia. The World Health Organization (WHO) Trusted Source World Health Organization Highly respected international organization Go to source outlines the general stages of dementia as follows.

  • Early stage dementia: Dementia symptoms typically begin gradually and may be so subtle that they go unnoticed. According to the National Institute on Trusted Source National Institute on Aging Governmental authority Go to source Aging (NIA) Trusted Source National Institute on Aging Governmental authority Go to source , people with early stage LBD often can still live independently with mild effects from their symptoms.
  • Middle stage dementia: Symptoms become more noticeable and have a larger impact on daily life. Someone with middle stage dementia may require more care and support to maintain personal hygiene or complete tasks.
  • Late stage dementia: The person is no longer able to live independently. They may have severe cognitive and memory loss, as well as loss of physical mobility.

LBD symptoms

LBD progresses differently for each person. This includes the rate of progression, the length of each stage, and the type of symptoms.

The primary types of symptoms associated with LBD are:

  • cognitive symptoms
  • psychological symptoms
  • physical symptoms
  • sleep symptoms

Each may progress differently throughout the disease.

Cognitive symptoms progression

According to the NIA Trusted Source National Institute on Aging Governmental authority Go to source , early cognitive symptoms are usually mild. As LBD progresses, people may experience further cognitive decline, including:

  • inability to pay attention
  • drowsiness throughout the day
  • problems concentrating
  • thinking in ways that don’t make sense
  • loss of inhibition, such as making socially inappropriate comments

Though people with LBD experience memory loss, the Alzheimer’s Association notes that memory loss is less significant with LBD than with Alzheimer’s disease. This is particularly true in the early stages of LBD.

Visual hallucinations

The NIA reports that up to 80% of people with LBD experience visual hallucinations, including in the early stages.

A 2022 study Trusted Source International Journal of Obesity Peer reviewed journal Go to source explains that hallucinations are typically recurring, and people with LBD can often describe their visions clearly.

The Alzheimer’s Association notes that hallucinations can help differentiate an LBD diagnosis from Alzheimer’s disease, in which hallucinations are significantly less frequent.

Sometimes, doctors prescribe Parkinson’s disease drugs to address LBD movement problems. These also may cause hallucinations as a side effect. Talk with your LBD care team about ways to manage these effects.

Mood symptoms progression

LBD can affect a person’s mental health, including mood and behavior.

In the early stages of LBD, people may display mild personality changes. They may become less interested in their favorite hobbies or social activities.

As symptoms worsen, people with LBD may have more severe psychological changes, including:

  • extreme apathy for participating in events or completing daily tasks
  • social isolation
  • anxiety
  • depression
  • restlessness and agitation, such as wringing hands or pacing
  • paranoia and suspicion of others, including loved ones
  • delusions, or believing scenarios that are not true

Physical symptoms progression

LBD may not cause any movement problems for years. However, some individuals develop mobility symptoms when the condition is still in its early stages.

These may be mild at first, such as a change in handwriting. People may not know that the changes are related to dementia. 

As LBD progresses, movement difficulties increase and may be similar to Parkinson’s disease symptoms. These may include:

  • tremor
  • balance problems
  • reduced facial expressions
  • stiffness 
  • weakened posture
  • loss of depth perception, which increases the risk of falls

People with late stage LBD may also have difficulty swallowing, which can make meals challenging and lead to malnutrition.

Sleep symptoms progression

Another characteristic early symptom of LBD is rapid eye movement (REM) sleep behavior disorder. According to the National Library of Medicine, this symptom can appear years before other LBD symptoms develop.

REM sleep behavior disorder causes people to act out their dreams, including talking in their sleep and walking or moving outside of bed. In extreme cases, someone may injure their partner with their movements.

Unlike most other LBD symptoms, REM sleep behavior disorder diminishes as the disease progresses and other symptoms become more significant.

What is the timeline for Lewy body dementia stages?

According to the NIA Trusted Source National Institute on Aging Governmental authority Go to source , the average timeline for LBD to progress from receiving a diagnosis to dying is 5–8 years. However, in some cases, the condition can last up to 20 years. 

Within the course of the disease, the length of time each stage lasts will vary. Not everyone with LBD will experience the same symptoms or disease progression.

Talk with your LBD care team about your diagnosis and the right care plan for you and your family.

What does a sudden worsening of Lewy body dementia symptoms mean?

Generally, LBD develops slowly, and symptoms worsen over time. In some situations, symptoms may worsen suddenly.

Antipsychotic medications

The Alzheimer’s Association notes that antipsychotic medications can cause sudden side effects in people with LBD. These can include:

  • sudden change in consciousness
  • sudden confusion
  • trouble swallowing
  • new or worsening mobility symptoms, such as tremor or rigidity
  • delusions or hallucinations

Anesthesia

People with LBD who receive general anesthesia before surgery may develop Trusted Source National Institute on Aging Governmental authority Go to source a sudden change in functional abilities, including severe confusion. These changes can be permanent.

If you or a loved one with LBD has to undergo surgery, talk with your doctor about alternative methods for anesthesia that can help lower the risk of sudden side effects.

Summary

Lewy body dementia (LBD) is a progressive disease that starts with mild symptoms that worsen over time.

There are no specific stages of LBD, but the general stages of dementia are mild, middle, and late. These are defined based on the severity of a person’s symptoms and their ability to live independently.

LBD progression is typically marked by cognitive function, movement, and mood declines. REM sleep behavior disorder can occur early in the disease but diminishes as other symptoms progress.

Every person with LBD will experience the disease differently. Talk with your medical team about your LBD diagnosis and the right care plan.

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  1. Dementia. (2022). https://www.who.int/news-room/fact-sheets/detail/dementia
  2. Dementia with Lewy bodies. (n.d.). https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/dementia-with-lewy-bodies
  3. Dementia with Lewy bodies. (2021). https://medlineplus.gov/genetics/condition/dementia-with-lewy-bodies/
  4. Nara, S., et al. (2022). Visual hallucinations in dementia with Lewy bodies originate from necrosis of characteristic neurons and connections in three-module perception model. https://www.nature.com/articles/s41598-022-18313-6
  5. Symptoms of dementia with Lewy bodies (DLB). (2021). https://www.alzheimers.org.uk/about-dementia/types-dementia/dementia-with-lewy-bodies-symptoms
  6. What is Lewy body dementia? Causes, symptoms, and treatments. (2021). https://www.nia.nih.gov/health/what-lewy-body-dementia-causes-symptoms-and-treatments

Medical Reviewer: Shilpa Amin, M.D., CAQ, FAAFP
Last Review Date: 2023 Jan 20
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