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What are the 7 Stages of Lewy Body Dementia?

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A written word on white paper, a question asking "Are you at risk of Lewy Body Dementia?"

When people talk about dementia, they’re not referring to a single condition. Instead, dementia is an umbrella term for various progressive neurological disorders that tend to require a form of specialized care. The most common type of progressive dementia is Alzheimer’s, but coming up right behind it is Lewy body dementia (LBD).

According to the Lewy Body Dementia Association (LBDA), an estimated 1.4 million people in the United States have LBD. Symptoms typically start appearing after age 50 and progress through 7 stages, gradually affecting a person’s memory, thinking, and movement. Caretakers for people with LBD may find the severity of this disease outpacing their ability to provide adequate care and should feel no guilt in reaching out for help.

What is Lewy Body Dementia?

The exact cause of LBD is unknown but is believed to be caused by abnormal protein deposits, known as Lewy bodies, that build up in the brain. These protein deposits can interfere with the normal function of brain cells, leading to cognitive and motor problems. LBD tends to occur in people over 50 and is more common in men than women.

While symptoms can vary from person to person, there are a few core symptoms that someone with LBD can expect:

  • Changes in thinking and reasoning
  • Unpredictable changes in concentration
  • Sluggish or stiff movement
  • Sleep disorders
  • Recurring hallucinations
A close-up of an elderly man having a hard time sleeping. Sleep disorders are common symptoms of Lewy Body Dementia.

The 7 Stages of Lewy Body Dementia

LBD typically progresses through 7 stages, although the length of each stage can vary greatly from person to person. It is important to note that these stages are not fixed, and a person with LBD may experience symptoms from different stages at the same time.

If you think your loved one is showing signs of dementia, these signs could indicate how far along they are:

Stage 1

At this early stage, your loved one will likely show no symptoms. Signs can show up on an MRI or CT scan; however, the build-up of Lewy bodies could still be undetectable at this level.

Stage 2

Mild symptoms will begin to appear. These symptoms may be slight changes in behavior and mild forgetfulness. However, your loved one will likely be able to continue their everyday activities. Unfortunately, these signs will still be difficult to notice, making detection and diagnosis tricky.

Stage 3

Moving from stage 2 to stage 3 is subtle. A person’s symptoms may become more noticeable as they experience mild cognitive decline. Forgetfulness and confusion will become more common, and they may become more of a fall risk.

Stage 4

Stage 4 is where most official diagnoses of LBD occur, as doctors will be able to detect cognitive decline with an exam. A person in this stage will likely have frequent memory problems and difficulty with routine tasks. These symptoms become life-disruptive, and they may need assistance to carry out their daily activities.

Stage 5

In this stage, a person with LBD may have severe memory problems and need help with all aspects of their daily care, including meal preparation and bathing. In addition, they are likely to be confused due to significant memory loss, and they may have difficulty with movement and coordination. They may also have hallucinations and delusions and exhibit inappropriate or unpredictable behavior.

Stage 6

A person with LBD in stage 6 may be bedridden and unable to communicate, requiring a high level of care. Memory loss continues to be significant, and they may only recall their early life. An inability to control their bowel or bladder function is common, and they may show signs of personality changes.

Stage 7

At this final stage, cognitive decline is extremely severe. It can last 1.5 to 2.5 years, and your loved one will require round-the-clock care, as they lose the ability to communicate and walk.

The progression of LBD is not always a straight line, and a person may experience periods of improvement or worsening of symptoms. The rate of progression can also vary greatly from person to person. Some people with LBD may progress through the stages quickly, while others may have a more gradual decline.

Managing Lewy Body Dementia

LBD is a progressive and, unfortunately, ultimately terminal brain disorder. However, with proper care and management, people with LBD can still have a good quality of life. Treatment for LBD typically involves a combination of medications, therapy, and supportive care to manage symptoms.

If your loved one is living with dementia, you’ve already taken the first step in helping them. By being aware of the stages of LBD and knowing how to seek support and resources, you’re ensuring you’re ready to manage the challenges of caring for a person with LBD.

It is also crucial for people with LBD to have a plan for their care as the disease progresses. This plan may include advance care planning, such as completing a living will or appointing a healthcare proxy. These decisions can be difficult to make, but they can help ensure that a person’s wishes are respected, and their care is managed in the way they desire.

Finding Care

Caring for someone with dementia can be challenging. Whether you’re looking for an assisted living community or need to take a break using respite care, Fox Trail Memory Care is ready to help. Contact us or book a tour today!

Ryan Donahue

Written by Ryan Donahue, Regional Vice President

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