Over 1 million individuals in the United States have Lewy body dementia (LBD), yet few people and medical professionals know of the disease and its symptoms, diagnosis, and treatment. Might you, a loved one, or a person you are treating have LBD? Here are 10 things to know.

1. LBD is the second most common form of neurodegenerative dementia, after Alzheimer’s disease. LBD is an umbrella term for a type of dementia associated with the presence of Lewy bodies (abnormal deposits of a protein called alpha-synuclein) in the brain.
2. LBD can appear in three common ways. Over time all three ways will lead to similar cognitive, physical, sleep, and behavioral symptoms. For more information, see What is Lewy body dementia?
3. The most common symptoms of LBD include:
1. Impaired thinking, such as problems with executive function (the ability to plan and process information), memory, or the ability to understand visual information
2. Fluctuations in cognition, attention, or alertness
3. Problems with movement, including tremors, stiffness, slowness, and difficulty walking
4. Visual hallucinations (seeing things that are not present)
5. Sleep disorders, such as acting out dreams while asleep
6. Behavioral and mood symptoms, including depression, apathy, anxiety, agitation, delusions, or paranoia
7. Changes in autonomic body functions, such as blood pressure control, temperature regulation, and bladder and bowel function
4. The symptoms of LBD are treatable. All medications prescribed for LBD are approved to treat symptoms of other diseases such as Alzheimer’s. But they may also help treat the cognitive, movement, and behavioral symptoms of LBD.
5. Early and accurate diagnosis of LBD is essential. People with LBD may react to certain medications differently than people with Alzheimer’s or Parkinson’s disease. Some medications can make LBD symptoms worse. That’s why it’s important to get the right diagnosis.
6. Traditional antipsychotic medications may be dangerous for individuals living with LBD. Many traditional antipsychotic medications—for example, haloperidol and thioridazine—are sometimes prescribed to control behavioral symptoms in people with Alzheimer’s disease and other forms of dementia. However, LBD affects an individual’s brain differently than other dementias. As a result, these medications can make movement symptoms much worse. They can also cause neuroleptic malignant syndrome, a potentially deadly condition.
7. Early recognition, diagnosis, and treatment of LBD can improve a person with LBD’s quality of life. LBD may affect an individual’s cognitive abilities, motor functions, and/or ability to perform activities of daily living. Treatment should always be monitored by a physician and may include medications and other therapies, including physical therapy, occupational therapy, speech therapy, and psychological counseling, as well as changes in exercise, diet, sleep habits, behavior, and daily routines.
8. Individuals living with LBD and their families don’t have to face this disease alone. LBD affects every aspect of a person—their mood, the way they think, and the way they move. People with LBD and their families need considerable help and resources from health care professionals and others. LBD creates challenging demands for continuing care. The Lewy Body Dementia Association (LBDA) helps families address many of these challenges.
9. Physicians need more education. An increasing number of general practitioners, neurologists, and other medical professionals are learning to recognize LBD and differentiate its symptoms from those of other diseases, leading to faster, more accurate diagnoses. However, more education about the diagnosis and treatment of LBD is essential.
10. More research is critical to the future of people with LBD and their families. Currently, there is no specific test to diagnose LBD. We need better diagnostic methods, such as screening questionnaires, biomarkers, and neuroimaging techniques. We also need more effective treatments. With further research, LBD may be detected earlier and, ultimately, treated and prevented.