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 cognitive and behavioral changes, followed by motor problems. 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 concurrently with the motor disorder, we call the disease DLB. Although the initial symptom sequence differs between PDD and DLB, as the disorders progress, the symptoms and underlying brain changes are much more similar than different. As such, many researchers and clinicians view PDD and DLB as part of a continuum of disease rather than as distinct entities.
What Causes DLB?
The cause of DLB is unknown. Scientists know that in DLB, there is a large buildup of a protein called alpha-synuclein. Some of these clusters are called Lewy bodies. Alpha-synuclein is normally present in the brain, but we do not yet understand what causes it to accumulate 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 the ages of 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 due to lack of sleep. They may also hallucinate and see people, objects, or animals that are not there.
Some people with DLB may need help walking, while others may have a hunched posture or trouble using their hands and feet due to 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, medications can help manage symptoms. These medications, called cholinesterase inhibitors, can help if a person with DLB has 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 at the same hour every day, with all curtains closed and the lights 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 prevent falls.
Research has shown that physical exercise enhances brain health, improves mood, and enhances overall fitness. A balanced diet, enough sleep, and limited alcohol intake are other important ways to promote good health. Other illnesses that affect the brain, such as diabetes, high blood pressure, and high cholesterol, should also be treated if present.