Lewy Body Dementia

Lewy body dementia (LBD) is a progressive brain disorder that happens when certain proteins called Lewy bodies build up in your brain cells. This makes it harder to think clearly and do everyday activities.

With this type of dementia, symptoms start slowly and get worse over time. There’s no cure, but your healthcare provider can help you manage symptoms with medications and therapies.

According to the U.S. National Institute on Aging, Lewy body dementia affects more than 1 million people in the United States. In adults after age 65, LBD is the second most common form of dementia after Alzheimer’s.

Types of Lewy body dementia

There are two types of LBD. They have similar symptoms. The difference is when the cognitive and movement problems begin:

• Dementia with Lewy bodies (DLB): Cognitive and memory problems come first, like in Alzheimer’s disease. Movement issues usually happen later or can occur at the same time as cognitive changes.
• Parkinson’s disease dementia: Movement problems start first, like in Parkinson’s disease. Cognitive and memory issues develop later.

Symptoms of Lewy body dementia

LBD causes a mix of symptoms. They can be different for each person:

• Thinking (cognitive): You might have trouble focusing, have memory loss, feel confused, have disorganized thoughts, see things that aren’t there (hallucinations) and have trouble understanding or using words.
• Mood and behavior: You may have changes in your mood or personality, like depression, anxiety or apathy. You could feel paranoid, believe in things that aren’t true (delusions) or feel angry or restless.
• Movement: You may have stiff muscles, shaking (tremors), slow or shuffling steps, trouble with balance, speech or swallowing, and a lack of facial expression.
• Nervous system issues: You might notice problems with your body’s automatic functions, like blood pressure, digestion, temperature control or bladder and bowel control. You may feel dizzy, faint or have trouble going to the bathroom. You may lose your sense of smell, which may be an early indicator of the disease.
• Sleep: You may have trouble falling or staying asleep. You could act out dreams (REM sleep behavior disorder), feel very sleepy during the day or have restless legs at night. Poor sleep can make other symptoms worse.

Symptoms may come and go. Some start early (acting out dreams or loss of smell) or show up later. They’ll slowly get worse over time.

Your provider may describe LBD in stages. These stages show how thinking and movement abilities change over time.

Lewy body dementia causes

LBD happens when proteins called Lewy bodies (alpha-synuclein) build up in brain cells. These proteins damage parts of your brain that control thinking and memory.

Doctors and researchers don’t know why some people get LBD and others don’t.

Risk factors of Lewy body dementia

LBD usually affects people after age 50. Having a biological family history of LBD or Parkinson’s disease can raise your risk.

Certain genes, like APOE and GBA, may also increase your chances. But having these genes doesn’t mean you’ll definitely get LBD.

Researchers are still studying other factors that may raise the risk of developing this condition.

Complications

LBD can lead to serious health problems, and some may be life-threatening:

• Depression, which can increase the risk of suicide
• Trouble eating, speaking or swallowing
• Heart problems
• Falls that can cause injury
• Pneumonia
• Needing help walking or moving

Dementia can impact your mental health. If you’re feeling overwhelmed, are thinking about suicide or self-harm, call or text 988 in the U.S. This is the Suicide & Crisis Lifeline. Someone is there to talk to you 24/7.

How doctors diagnose Lewy body dementia

To make a diagnosis, your provider may use the following steps:

• Ask about your medical history and do a physical exam
• Do a neurological exam to check your thinking and memory and evaluate abnormal movement problems
• Order blood tests, cerebrospinal fluid test, a skin biopsy and brain scans (like a CT, MRI, SPECT or PET scan)
• Consider a neuropsychological assessment to clarify your cognitive profile
• Recommend a sleep study

A team of specialists may work together to make a diagnosis. This team might include:

• Neurologists
• Psychiatrists
• Neuropsychologists
• Geriatricians

They combine your test results and symptoms to determine if you have “probable LBD.” This means you most likely have the condition based on the information they have, even though there isn’t a single test that can say for sure.

How is Lewy body dementia treated?

There’s no cure for Lewy body dementia and no way to prevent it. But medications and therapies can help manage symptoms for a while.

Your doctors will look at how LBD is affecting you and what stage you’re in. Then, they’ll create a treatment plan that best fits your needs.

In later stages, your care team may focus more on palliative care. This means providing comfort, support and relief from symptoms instead of intense treatments or hospital stays.

Medications for Lewy body dementia

Your provider may offer different medications. These can include:

• Cholinesterase inhibitors (like rivastigmine, galantamine and donepezil) to improve thinking and memory
• Antipsychotics (like pimavanserin, clozapine, quetiapine and aripiprazole) for hallucinations that don’t get better with cholinesterase inhibitors
• Carbidopa-levodopa to help with movement problems
• Antidepressants (like SSRIs) to treat depression
• Clonazepam and melatonin to improve sleep
• Memantine for early symptom relief

Your provider may also recommend medications for nervous system symptoms, like dizziness or blood pressure changes when standing. These are usually prescribed if other steps, like raising your legs, eating foods with more salt or drinking more fluids, don’t help.

Therapies for Lewy body dementia

Different types of therapy may help, including:

• Occupational therapy: Helps you stay independent by teaching ways to manage daily tasks
• Physical therapy: Improves your strength, balance and ability to move
• Speech therapy: Helps with speaking, understanding language and swallowing

LBD can also impact your mental health. Talking to a mental health professional, either one-on-one or in a group, can help you and your family cope. Support groups are also available to connect you with others going through similar experiences.

A calm and steady routine can be a benefit as well. This can prevent symptoms like confusion, agitation and stress.

When should I see a healthcare provider?

Hallucinations are often one of the first signs of Lewy body dementia. If you or a loved one starts seeing things that aren’t there, especially with changes in movement, mood, behavior or thinking, talk to a healthcare provider.

If you’ve already been diagnosed with LBD, you’ll need regular check-ups. Your care team will track your symptoms, adjust treatments as needed and watch for any side effects. Be sure to tell them if anything changes or if new symptoms appear.

Lewy body dementia life expectancy

On average, people live five to eight years after being diagnosed with Lewy body dementia. However, this number can vary. Some people live much longer, sometimes even decades.

Your provider can help you understand what to expect. Everyone’s experience is different.

What’s the prognosis for Lewy body dementia?

As this is a progressive disease, that means it gets worse over time. Some people decline slowly, while others may notice faster changes. Your general health and other medical conditions can affect how the disease progresses.

If you have LBD, your provider will suggest treatments to manage symptoms that improve your comfort and safety.

As the disease progresses, you may lose the ability to make decisions or handle daily responsibilities. That’s why it’s important to talk early about care planning. An advance directive is a smart step. It’s a legal form that tells others what care you want if you can’t speak for yourself.