Patient education: Dementia with Lewy bodies (The Basics)

What is dementia with Lewy bodies? — 

Dementia with Lewy bodies ("DLB") is one of a group of brain disorders called "dementia." This group of brain disorders causes memory problems and makes it hard to think clearly. DLB is sometimes called "Lewy body dementia."

The cause of DLB is not known. It gets its name from buildups of protein in the brain called "Lewy bodies" that can be found during an autopsy (an exam that is done after death). Lewy bodies are also seen in the brains of people with Parkinson disease, which is a brain disorder that affects movement. In people with DLB, the Lewy bodies are more widely spread throughout the brain than in people with Parkinson disease.

What are the symptoms of DLB? — 

The main symptoms include:

●Problems making decisions, thinking clearly, or paying attention. These can include:

•Trouble paying attention – A person with DLB might have trouble focusing or doing multiple tasks at once.

•Trouble with problem solving – This can lead to problems at work and, later, problems with normal daily activities at home.

•Problems driving – A person with DLB might get lost, not know how far it is from 1 place to another, or not see other cars.

•Memory problems

●Seeing things that are not really there, called "hallucinations" – These can include colors, shapes, animals, or people.

●Episodes of being sleepy, staring at things, or acting strangely – The person might seem to "zone out" or might take long naps during the day. These episodes can last a few minutes or several days.

●Movement problems – These are similar to the movement problems caused by Parkinson disease. They can include:

•Stiffness

•Slow movements

•Trouble walking, often with balance problems or falls

•Tremors

Other DLB symptoms can include:

●Acting out dreams while sleeping – The person might hit someone, eat, talk, or act out other things they are dreaming about.

●Episodes of fainting or losing consciousness

●Leaking urine

●Believing things that are not true – For example, a person with DLB might believe the place where they live is not really their home.

●Depression

Should I see a doctor or nurse? — 

Yes. See a doctor or nurse if you or someone close to you shows signs of DLB. The problems might be caused by a different condition that doctors can treat. For example, people with diabetes might act confused if their blood sugar is not well managed.

Will I need tests? — 

Maybe. Your doctor or nurse will do an exam and ask about your symptoms. They will also ask people who are close to you about any symptoms they notice.

Your doctor or nurse might do tests to see if you have DLB or a different problem. Tests can include:

●Answering questions, and doing certain tasks – These tests can tell the doctor how well your brain is working.

●Imaging tests, such as an MRI – An MRI creates pictures of your brain. It can show changes in your brain, including other conditions that could be causing symptoms.

●Blood tests

Depending on the results, you might have other tests. These can include:

●"Electroencephalogram" ("EEG") – This measures electrical activity in your brain.

●Sleep study – You spend the night in a lab at the hospital or doctor's office. You are hooked up to machines that measure your heart rate, breathing, and other body functions. The results tell your doctor more about any sleep problems you have.

How is DLB treated? — 

There is no specific treatment for DLB. The symptoms get worse over time, but doctors can help treat the symptoms.

Treatments include:

●Medicines to help with symptoms – People with DLB often get medicines that are similar to those prescribed for Alzheimer disease and Parkinson disease.

If needed, doctors can also prescribe medicines to help with hallucinations, sleep, or mood problems.

●For people with DLB who have fainting episodes, doctors might suggest changes to fluid and salt intake. Or they might recommend compression stockings to help with blood flow.

●Physical therapy to help with movement problems

●Devices, such as a walker or cane, to help with balance problems such as falling

Your doctor might also recommend things to reduce stress. These include:

●Exercise

●A regular routine – Avoiding things that cause confusion or strange behavior can help with DLB. Having a regular routine at night can be especially helpful.

●Spending time with pets or listening to music

●Finding someone to help take care of the person with DLB – This can make it easier for the person's main caregiver to get enough rest.

How do I stay safe? — 

If you have DLB, you might not realize how much it affects you. Trust your family and friends to tell you when it is not safe for you to drive, cook, or do other things that could be dangerous.

People with DLB often fall and hurt themselves. To reduce the risk of falling, you should:

●Make sure your rugs are attached to the floor, or use non-skid backing on them.

●Tuck away loose wires and electrical cords.

●Wear sturdy, comfortable shoes.

●Keep walkways well lit.

●Use handrails on steps, in the shower, and other places where it can be hard to keep your balance.

More on this topic

Patient education: Dementia (including Alzheimer disease) (The Basics)
Patient education: Mild cognitive impairment (The Basics)
Patient education: Parkinson disease (The Basics)
Patient education: Preventing falls in adults (The Basics)

Patient education: Dementia (including Alzheimer disease) (Beyond the Basics)
Patient education: Parkinson disease symptoms and diagnosis (Beyond the Basics)