Lewy Body Dementias

Lewy body dementias include dementia with Lewy body disease (DLB) and Parkinson’s disease with dementia (PDD). Common symptoms include problems with movement, visual hallucinations and fluctuations in thinking skills or attention.

What is Dementia with Lewy Body Disease?

Dementia with Lewy body disease (DLB) is a condition that causes changes in thinking, behavior, and movement. DLB usually starts with thinking and behavior changes that are followed by problems with movement. The movement problems in DLB are similar to those seen in people with more classical Parkinson’s disease.

Parkinson’s Disease with Dementia (PDD) versus Dementia with Lewy Bodies (DLB)

Some patients with Parkinson’s disease (PD) experience no or only subtle cognitive decline, and their primary limitation is their motor disorder. However, other patients with Parkinson’s disease develop dementia as a consequence of the disease. When dementia develops after an established motor disorder, we call the disease Parkinson’s disease with dementia (PDD). In contrast, when dementia develops prior to or at the same time as the motor disorder, we call the disease DLB. Although the initial sequence of symptoms differs in PDD and DLB, as the disorders progress, the symptoms and the underlying brain changes are much more similar than they are different. As such, many researchers and clinicians think of PDD and DLB as being on a continuum of a similar disease process rather than as two distinct entities.

What Causes DLB?

The cause of DLB is unknown. Scientists know that in DLB there is a large build-up of a protein called alpha synuclein. Some of these clusters are called Lewy bodies. Alpha-synuclein occurs normally in the brain, but we do not yet understand what causes it to build up in large amounts. Lewy bodies are also seen in Parkinson’s disease. As more and more proteins clump in the nerve cells, the cells lose their ability to function and eventually die. This causes the affected parts of the brain to shrink.

How is Age Related to DLB?

Most people with DLB start having symptoms between ages 50 and 85, although some people have shown signs earlier.

What Happens in DLB?

People with DLB may have trouble focusing, remembering things, staying awake during the day, or staying asleep at night. They may become more frustrated or confused because of the lack of sleep. They may also hallucinate and see people, objects, or animals that are not there.

Some people with DLB will need help with walking, while others may have hunched posture or trouble using their hands and feet because of stiff muscles. People with DLB may appear to be better and need less help on some days, only to become worse and more confused again and need more help the next day or in a few days. This is because their energy level and focus will vary.

DLB is a disease that changes with time. A person with DLB can live for many years with the disease. Research suggests that a person with DLB may live an average of 5–7 years with the disease, although this can vary from person to person.

Are There Medicines to Treat DLB?

Though there is no cure for DLB yet, there are medications that help manage the symptoms. These medications are called cholinesterase inhibitors, and they can help if a person with DLB is having memory problems. Some examples of these medicines are donepezil, rivastigmine and galantamine. If a person with DLB has movement symptoms they may be treated with medications used for Parkinson’s disease, such as levodopa. Sleep problems may be managed by sleep medications including melatonin.

Because people with DLB are usually very sensitive to medications, any new medication, even one that is not being used for the brain, needs to be reviewed with the person’s provider to avoid potential contraindication.

How Can We Manage Hallucinations?

It may not be necessary to treat all hallucinations of a person with DLB. Hallucinations are often harmless, and it is okay to allow them to happen, as long as they are not disruptive or upsetting to the person or his/her surroundings. Sometimes, recognizing the hallucination and then switching the topic might be an efficient way of handling frustrations that occur because of a hallucination. If hallucinations need medical treatment, your provider may be able to discuss and suggest some options. However, most medications used to treat hallucinations may make movement symptoms worse.

How Can We Support the Sleep/Wake Cycle of DLB?

For people with DLB who are confused about the day-night cycle, some daily strategies can be helpful. At night, starting a “lights out” routine that happens at the same hour every day, where all curtains are closed and lights are turned off, can help the person understand that it is sleep time. During the day, opening the curtains, allowing patients to spend as much time in the daylight as possible, avoiding naps, and organizing stimulating activities, can be helpful. Having lots of calendars and clocks in every room might also help a person with DLB be less confused about the time of day.

What Other Things Help?

There are various ways to help a person with DLB. Speech therapy may help improve communication between people with DLB and others. Physical therapy may help strengthen and stretch stiff muscles and help to prevent falls.

Research has shown that physical exercise helps to enhance brain health and improves mood and general fitness. A balanced diet, enough sleep, and limited alcohol intake are other important ways to promote good brain health. Other illnesses that affect the brain, such as diabetes, high blood pressure, and high cholesterol, should also be treated if present.