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Lewy body dementia (LBD) is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. Lewy body dementia is one of the most common causes of dementia.
LBD affects more than 1 million individuals in the United States. People typically show symptoms at age 50 or older, although sometimes younger people have LBD. LBD appears to affect slightly more men than women.
Diagnosing LBD can be challenging. Early LBD symptoms are often confused with similar symptoms found in other brain diseases or in psychiatric disorders. Lewy body dementia can occur alone or along with other brain disorders.
It is a progressive disease, meaning symptoms start slowly and worsen over time. The disease lasts an average of five to eight years from the time of diagnosis to death, but can range from two to 20 years for some people. How quickly symptoms develop and change varies greatly from person to person, depending on overall health, age, and severity of symptoms.
In the early stages of LBD, symptoms can be mild, and people can function fairly normally. As the disease advances, people with LBD require more help due to a decline in thinking and movement abilities. In the later stages of the disease, they often depend entirely on others for assistance and care.
Some LBD symptoms may respond to treatment for a period of time. Currently, there is no cure for the disease. Research is improving our understanding of this challenging condition, and advances in science may one day lead to better diagnosis, improved care, and new treatments.
Scientists are also learning about risk factors for LBD. A risk factor is something that may increase the chance of developing a disease. Some risk factors can be controlled while others cannot. Age is considered the greatest risk factor. No specific lifestyle factor has been proven to increase one's risk for LBD.
Volunteers are needed for clinical trials that explore how genetics and other factors contribute to LBD risk. By joining one of these studies, you may learn more about how LBD changes the brain and contribute useful information to help other older adults in the future.
Some people with LBD may not experience significant movement problems for several years. Others may have them early on. At first, movement symptoms, such as a change in handwriting, may be very mild and easily overlooked. Movement problems may include:
In DLB, cognitive symptoms develop within a year of movement symptoms. People with DLB have a decline in thinking ability that may look somewhat like Alzheimer's disease. But over time, they also develop movement and other distinctive symptoms of LBD.
In Parkinson's disease dementia, cognitive symptoms develop more than a year after the onset of movement symptoms (for example, tremor or muscle stiffness). Parkinson's disease dementia starts as a movement disorder, with symptoms such as slowed movement, muscle stiffness, tremor, and a shuffling walk. These symptoms are consistent with a diagnosis of Parkinson's disease. Later on, cognitive symptoms of dementia and changes in mood and behavior may arise.
Talking to both patients and caregivers helps doctors make a diagnosis. It is important to tell the doctor about any symptoms involving thinking, movement, sleep, behavior, or mood. Also, discuss other health problems and provide a list of all current medications, including prescriptions, over-the-counter drugs, vitamins, and supplements. Certain medications can worsen LBD symptoms.
Caregivers may be reluctant to talk about a person's symptoms when that person is present. Ask to speak with the doctor privately if necessary. The more information a doctor has, the more accurate a diagnosis can be.
After receiving a diagnosis, a person with LBD may benefit from seeing a neurologist who specializes in dementia and/or movement disorders. Your primary doctor can work with other professionals to follow your treatment plan. Depending on an individual's particular symptoms, physical, speech, and occupational therapists, as well as mental health and palliative care specialists, can be helpful.
Support groups are another valuable resource for people with LBD and their caregivers. Sharing experiences and tips with others in the same situation can help people find practical solutions to day-to-day challenges and get emotional and social support.
Some medications used to treat Alzheimer's disease also may be used to treat the cognitive symptoms of LBD. These drugs, called cholinesterase inhibitors, act on a chemical in the brain that is important for memory and thinking. They may also improve hallucinations, apathy, and delusions. The U.S. Food and Drug Administration has approved one Alzheimer's drug, rivastigmine, to treat cognitive symptoms in Parkinson's disease dementia. Several other drugs are being tested as possible treatments for LBD symptoms or to disrupt the underlying disease process.
LBD-related movement symptoms may be treated with medications used for Parkinson's disease, called carbidopa-levodopa. These drugs can help make it easier to walk, get out of bed, and move around. However, they cannot stop or reverse the disease itself. Side effects of this medication can include hallucinations and other psychiatric or behavioral problems. Because of this risk, physicians may recommend not treating mild movement symptoms with medication. Other Parkinson's medications are less commonly used in people with LBD due to a higher frequency of side effects.
Sleep problems may increase confusion and behavioral problems in people with LBD and add to a caregiver's burden. A physician can order a sleep study to identify any underlying sleep disorders such as sleep apnea, restless leg syndrome, and REM sleep behavior disorder.
REM sleep behavior disorder, a common LBD symptom, involves acting out one's dreams, leading to lost sleep and even injuries to individuals and their sleep partners. Clonazepam, a drug used to control seizures and relieve panic attacks, is often effective for the disorder at very low dosages. However, it can have side effects such as dizziness, unsteadiness, and problems with thinking. Melatonin, a naturally occurring hormone used to treat insomnia, may also offer some benefit when taken alone or with clonazepam.
Some people with LBD have difficulty falling asleep. If trouble sleeping at night persists, a physician may recommend a prescription medication. It is important to note that treating insomnia and other sleep problems in people with LBD has not been extensively studied, and that treatments may worsen daytime sleepiness and should be used with caution. Sleep problems can also be addressed by avoiding lengthy naps, increasing daytime exercise, and avoiding caffeine, alcohol, and chocolate late in the day.
Behavioral and mood problems in people with LBD can arise from hallucinations, delusions, pain, illness, stress, or anxiety. They may also be the result of frustration, fear, or feeling overwhelmed. The person may resist care or lash out verbally or physically.
Medications are appropriate if the behavior interferes with the person's care or the safety of the person or others. If medication is used, then the lowest possible dose for the shortest period of time is recommended.
The first step is to visit a doctor to see if a medical condition unrelated to LBD is causing the problem. Injuries, fever, urinary tract or pulmonary infections, pressure ulcers (bed sores), and constipation can worsen behavioral problems and increase confusion.
Certain medications, such as anticholinergics and antihistamines may also cause behavioral problems. For example, some medications for sleep problems, pain, bladder control, and LBD-related movement symptoms can cause confusion, agitation, hallucinations, and delusions. Similarly, some anti-anxiety medicines can actually increase anxiety in people with LBD. Review your medications with your doctor to determine if any changes are needed.
Cholinesterase inhibitors may reduce hallucinations and other psychiatric symptoms of LBD, but they may have side effects, such as nausea, and are not always effective. However, they can be a good first choice to treat behavioral symptoms. Cholinesterase inhibitors do not affect behavior immediately, so they should be considered as part of a long-term strategy.
In some cases, antipsychotic medications are necessary to treat LBD-related behavioral symptoms to improve the quality of life and safety of the person with LBD and his or her caregiver. These types of medications must be used with caution because they can worsen movement symptoms and cause severe side effects, such as confusion, extreme sleepiness, and low blood pressure that can result in fainting. In rare cases, a potentially deadly condition called neuroleptic malignant syndrome can occur. Symptoms of this condition include high fever, muscle rigidity, and muscle tissue breakdown that can lead to kidney failure. Report these symptoms to your doctor immediately.
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