It can be hard to predict how Lewy body dementia (LBD) will progress. Symptoms may be mild one day and severe another. Gradually, everyday tasks that were once routine may start to require support from others.

Although some sources refer to seven stages of LBD, these stages aren’t officially accepted by medical associations. Besides, different people progress at different rates. So, how do you know what to expect when you or a loved one is diagnosed with LBD?

The timing of symptoms and their impact on someone’s health can vary widely from person to person. To understand how the condition is affecting someone’s life, doctors monitor changes in thinking, daily function, movement, shifts in independence during day-to-day tasks, and other symptoms.

🗳️ How have you noticed your (or your loved one’s) Lewy body dementia symptoms progressing over time?

I haven’t noticed symptoms progressing.

They’re progressing slowly and gradually.

Each day or week is different — symptoms seem better or worse at different times.

Symptoms suddenly get worse, with steep drop-offs.

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Knowing what LBD changes to look for can help you proactively make the best decisions to maintain your loved one’s safety, independence, and quality of life. In this article, we’ll discuss the possible range of LBD symptoms, their impact, and what to expect with LBD.

What To Expect From Lewy Body Dementia Progression

LBD is a brain disorder that gets worse over time. It’s caused by abnormal protein deposits called Lewy bodies. These deposits disrupt the areas of the brain in charge of memory, complex thinking, movement, and balance. LBD is used to refer to two types of dementia — dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).

LBD doesn’t usually follow a predictable path. Symptoms and their severity can vary from person to person. Cognition (thinking, learning, and processing data), attention, and alertness may also fluctuate, sometimes changing from hour to hour throughout the day.

One MyParkinsonsTeam member shared about their loved one, “There are days where he can remember what you just asked or were talking about. Then some days, he can’t even remember he just ate.”

Care and treatment plans should be tailored to the symptoms and needs of each person. Sometimes, managing one symptom may affect another, so healthcare providers may need to adjust treatment over time.

There are no official LBD stages. But the severity of LBD symptoms and how they affect daily life can give a general idea of how LBD may change over time. Someone with LBD may experience symptoms at different times, or not at all.

Mild LBD Symptoms

Mild symptoms in early LBD may have a minor impact on someone’s daily life. Some people may notice changes in attention, mood, sleep, sense of smell, or other body functions while still being able to manage everyday activities independently.

Early symptoms may include changes in the ability to concentrate, stay alert, or remain awake. Some people can experience detailed and vivid visual hallucinations — seeing people, things, or objects that aren’t really there. Hallucinations can occur early in LBD and may be very detailed and realistic to the person experiencing them.

Symptoms of LBD include:

• Mood changes such as depression or anxiety
• REM sleep disturbances such as acting out dreams or feeling unusually sleepy during the day
• Changes in automatic body functions such as constipation and blood pressure regulation
• Reduced sense of smell
• Movement symptoms (parkinsonism) such as tremors, rigid muscles, or slow movement

Moderate LBD Symptoms

As LBD symptoms become more noticeable, one may require more reminders, supervision, or help from others for everyday activities. Early symptoms such as forgetfulness may be subtle at first but can become more pronounced over time. However, even mild forgetfulness can affect safety, quality of life, and independence.

One MyParkinsonsTeam member shared, “Frustration is the name of the game when it comes to forgetfulness. I’m so forgetful that it scares me. I don’t try to win in discussions because I don’t remember it the same as someone else.”

Cognitive changes and movement issues can make it harder to manage routines independently, and those with LBD may need more support as a result.

Moderate symptoms of LBD may include:

• Difficulty with everyday tasks such as preparing meals, getting dressed, paying bills, or taking medications
• More pronounced mobility (movement) issues, for example, trouble walking, reaching, and balancing
• Thinking and communication changes such as difficulty paying attention, planning, organizing, problem solving, or following a conversation

Worsening symptoms affecting movement, attention, judgment, and alertness may make some everyday activities less safe. To prevent falls and other injuries, your loved one may require changes to their home, such as clearing walking paths, removing rugs or using mobility aids like a cane to help them dramatically reduce the risk of dangerous falls and move around safely.

Severe Cognitive and Functional Decline in LBD

As LBD progresses, changes in thinking and movement can make everyday life more challenging. Someone with severe LBD symptoms may need hands-on help with daily activities and personal care.

Severe symptoms can look like:

• Worsening confusion, memory loss, and challenges maintaining attention and awareness
• More falls and difficulty moving, which may involve a slower gait, problems balancing, and trouble getting up from a seated or lying down position
• More difficulty communicating through speech or gestures
• Trouble swallowing and eating, which can increase the risk of choking or chest infections (aspiration pneumonia)
• Major loss of independence, for example, needing assistance with daily activities such as bathing or going to the restroom

Managing LBD Symptoms

Treatment for LBD focuses on managing symptoms while supporting your loved one’s safety and independence. Work with your loved one’s care team to help plan for changes in treatment, support daily activities, and prevent falls as symptoms change.

There isn’t a set point when someone with LBD will need a certain level of care. For example, moving to a nursing home isn’t a standard milestone of LBD. Some people may need care in a nursing home or other facility, while others may continue living at home with support. Care needs can change over time based on symptoms, safety, and the support available.

When To Talk to Your Doctor

Changes in LBD can be hard to recognize, especially because cognitive ability, attention, and alertness can fluctuate over time and from day to day. Your observations (daily journal notes) can help a healthcare team understand what has changed and how it affects your loved one.

It’s essential to talk with your loved one’s doctor if you observe any sudden or major change in their functional ability, symptoms, or behavior.

Talk to a healthcare provider if your loved one:

• Suddenly needs much more help with activities than usual.
• Has a sudden or major change in movement, thinking, sleep, alertness, or other LBD symptoms.
• Has an abrupt or dramatic change in mood or behavior, such as becoming much more confused, agitated, withdrawn, or fearful.

Other Health Problems May Worsen LBD Symptoms

A sudden change doesn’t necessarily mean that LBD has worsened. Other health problems, such as urinary tract infections, can cause abrupt changes in behavior or confusion. Certain medications can also worsen confusion, hallucinations, or other symptoms similar to LBD.

A doctor can help determine what may be causing any sudden changes. Let them know what’s changed, when you first noticed it, and how it’s been affecting your loved one. Keeping a record of symptoms and changes can help doctors understand how LBD is progressing and make appropriate recommendations.