LBD is progressively debilitating. LBD is a complex disease and challenging for the persons living with as well as their caregiver. Here are some tips and resources for care partners:. There is currently no cure for LBD. Because it is such a complex disease, caregivers often ride a rollercoaster of emotions. Learning to ask for help, staying connected to others for support and balancing your needs should be top priority. Facing Lewy Body Dementia Together provides easy-to-read, introductory clinical information on Lewy body dementia in a patient friendly manner.
Did you know that spinal fluid is extremely valuable in LBD research? This paper discusses some of the causes of behavioral symptoms in LBD, as well as strategies and treatments to reduce their frequency and severity. This publication provides helpful information to LBD families about medications used to treat cognitive, motor, mood or behavioral disorders.
This information may be helpful in discussing with healthcare providers the risks and benefits of certain medications. With many states legalizing the use of medical marijuana compounds called cannabinoids , and some even making it legal for recreational use, you might be wondering if it would be beneficial to people with Lewy body dementias LBD.
In our newest Ask the Expert article, Dr. Medications to treat impaired memory and cognitive function in LBD are available in pill and patch form. Learn whether there is a difference between the two forms and what medications should be considered.
Howard Hurtig of University of Pennsylvania answers this common caregiver question. 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.
People with LBD may benefit from physical therapy and exercise. Talk with your doctor about what physical activities are best. 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. Excessive daytime sleepiness is also common in LBD. If it is severe, a sleep specialist may prescribe a stimulant to help the person stay awake during the day. 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.
Antidepressants can be used to treat depression and anxiety, which are common in LBD. Many of them are often well tolerated by people with LBD. 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. Antipsychotic medications increase the risk of death in all elderly people with dementia but can be particularly dangerous in those with LBD. Doctors, patients, and family members must weigh the risks of antipsychotic use against the risks of physical harm and distress that may occur as a result of untreated behavioral symptoms.
LBD affects the part of the nervous system that regulates automatic actions like blood pressure and digestion. One common symptom is orthostatic hypotension, a drop in blood pressure when standing up that can cause dizziness and fainting. Simple measures such as leg elevation, elastic stockings, and, when recommended by a doctor, increasing salt and fluid intake, can help. If these measures are not enough, a doctor may prescribe medication. People with LBD are often sensitive to prescription and over-the-counter medications for other medical conditions.
People with LBD should tell their doctors about every medication they take, including prescription and over-the-counter medicines , vitamins, and supplements. If surgery is planned and the person with LBD is told to stop taking all medications beforehand, ask the doctor to consult the person's neurologist to develop a plan for careful withdrawal.
In addition, talk with the anesthesiologist in advance to discuss medication sensitivities and risks unique to LBD. People with LBD who receive certain anesthetics may become confused or delirious and have a sudden, significant decline in functional abilities, which may become permanent.
Depending on the procedure, possible alternatives to general anesthesia may include a spinal or regional block.
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