Perhaps you have heard of Lewy body dementia (LBD), but you know little about it. You’re not alone; most people tend to be more familiar with other forms of dementia. Researchers believe it is the most frequently misdiagnosed form of dementia.
Even though it’s not well understood by the public, it’s a common condition. Here are a few facts about Lewy body dementia, which is the second most common form of dementia after Alzheimer’s disease. It affects about one million people in the United States.
What is Lewy Body Dementia?
A German neurologist, Dr. Friedrich Heinrich Lewy, first discovered clumps of protein in the brain in 1912. In the 1980s, long after Dr. Lewy’s death, advances in science made it easier to find these clumps. Researchers realized that they were more common than once believed, and they recognized the doctor’s work by naming the distinctive clumps Lewy bodies.
Lewy bodies are made of a protein called alpha-synuclein, which helps brain cells communicate with each other. Sometimes this protein folds in on itself, forming the distinctive clumps and interfering with brain function.
Lewy body dementia actually consists of two diseases: dementia with Lewy bodies and Parkinson’s disease dementia. Both conditions cause cognitive decline and problems with movement. The difference between the two conditions lies in the order in which the symptoms appear. Dementia with Lewy bodies presents with cognitive symptoms initially, with movement symptoms appearing later. In those with Parkinson’s disease dementia, the order is reversed: Problems with movement come first, with cognitive symptoms coming later. In later stages, the two conditions will look very similar. Also, both conditions have similarities to Alzheimer’s disease.
Doctors cannot diagnose either form of Lewy body dementia with a simple test or combination of tests. Both require a clinical diagnosis, meaning that a doctor or medical team makes the determination based on symptoms.
Symptoms of Lewy Body Dementia
Cognitive symptoms appear when Lewy bodies occur in the outer part of the brain. This part, the cortex, is the “thinking” part of the brain. The individual will display typical symptoms of dementia: memory loss, problems with words, general confusion and mood changes. In addition, these more unusual symptoms may appear:
- Hallucinations
- Fluctuations in cognition and alertness
- Disturbed REM sleep, resulting in acting out of dreams, sometimes violently
- Movement symptoms like those exhibited in Parkinson’s disease
Parkinson’s symptoms originate in the midbrain, the top part of the brainstem. These include:
- Tremor, usually starting in one extremity
- Stiffness of the limbs or torso
- Bradykinesia (slowness of movement)
- Problems with balance
Some of those with Parkinson’s will never display cognitive problems and will never receive a diagnosis of dementia. Those who have problems with brain function will probably receive a diagnosis of Parkinson’s disease dementia.
Differences Between LBD and Alzheimer’s Disease
Although Lewy body dementia resembles Alzheimer’s, it’s important to distinguish between the two because they respond to different treatments. Here are some things doctors look at when making a diagnosis:
- Memory loss: those with Alzheimer’s have more memory problems and display them earlier
- Movement problems: those with LBD usually have problems with movement early in the course of the disease, while those issues occur later in those with Alzheimer’s
- Disordered thinking: those with LBD are more likely to have hallucinations and delusions, and are also more likely to misidentify familiar faces
- Sleep problems: disturbed sleep occurs more frequently in those with LBD
- Nervous system problems: Those with LBD often have problems with the autonomous nervous system, such as a drop in blood pressure upon standing that results in dizziness; problems with bladder and bowels; excessive salivation; reduced sweating and sensitivity to heat
Progression of Lewy Body Dementia
Lewy body dementia is progressive in both of its forms, meaning that symptoms become worse with time. As time passes, most of those with LBD display worsening dementia, increased aggression, more symptoms of depression, a greater incidence of falls and more problems with movement. The course of the disease can vary greatly, however. A person’s health status can influence the rate at which symptoms of LBD worsen.
Treatments for LBD aim to manage symptoms and improve the quality of life. At present, they do not slow disease progression and they cannot cure LBD. The average length of life after diagnosis is five to seven years, but some people who have LBD have lived as long as 20 years after diagnosis.
Research is ongoing, and scientists understand the condition much better than they did in the past. Many believe that in the future we will be able to slow or stop the progression of the disease.
Causes and Risk Factors
Although we know that changes in the brain cause Lewy body dementia, we don’t know what triggers those changes. Variations in three genes have been linked to the disease, but the connection is not clear. At present, it’s not considered a genetic disease.
The risk of developing LBD increases with age. Men are slightly more likely to have it than women. Having someone in your family with LBD can increase your chances of developing it.
Diagnosis and Treatment
An appointment with your primary care doctor may be your first step after initial symptoms of dementia appear. Eventually, you will need to see a specialist. Often a specialist in neurology or geriatrics makes the diagnosis of LBD. Since there are no tests for LBD, the diagnosis will be “probable” Lewy body dementia. Some experienced practitioners may make accurate diagnoses up to 90% of the time.
Doctors begin by looking for at least two of the classic symptoms of LBD: Parkinson-like movement patterns, REM sleep behavior disorder, repeated hallucinations and fluctuations in thinking ability and alertness. The person with the symptoms will receive a neurological evaluation and a test of mental abilities.
Additional tests can be helpful. A heart test can check for an issue with blood flow typical of LBD. A sleep study can reveal issues with REM sleep.
Doctors may order a brain scan to eliminate other diagnoses, such as tumor or stroke. Although a brain scan cannot lead to a definite diagnosis of LBD, doctors may see patterns that suggest a particular dementia.
Medication for Lewy Body Dementia
Deep brain stimulation is a treatment for Parkinson’s that is used primarily when patients don’t respond to medication. Experts do not consider it a viable treatment for Lewy body dementia, however. At least one study suggests that it might increase the risk of dementia.
That leaves medication as the primary tool available to treat LBD. Drugs are commonly used to treat these symptoms:
Cognitive Symptoms
Medications known as cholinesterase inhibitors treat cognitive problems. These medications are used for Alzheimer’s, too, but some researchers believe they are even more effective with LBD. They work by increasing chemical messengers in the brain.
Movement Symptoms
The discovery of Levodopa, sometimes called L-dopa, was a breakthrough in Parkinson’s treatment in the 1960s. Today it is combined with another drug, carbidopa, to increase its effectiveness.
Behavioral Symptoms
Antipsychotic drugs can treat symptoms such as hallucinations and delusions, but these drugs can cause serious side effects in those with LBD. That’s why it’s important to distinguish LBD from other dementia disorders. Anti-psychotic drugs come with a black-box warning for the elderly, and one condition that can occur could even be fatal. The benefit of antipsychotic drugs to both the patient and the caregiver must be carefully weighed against the risks.
Doctors often prescribe other drugs for symptoms such as sleep disorders, urinary incontinence and blood pressure irregularities. Although medication is valuable in the management of LBD, many of the drugs have significant side effects.
Besides drug therapy, those with Lewy body dementia may benefit from speech therapy, occupational therapy and physical therapy. In addition, counselors can help both those with LBD and their family members, especially those who are caregivers.
Lewy Body Dementia Care Options
A diagnosis of Lewy body dementia can overwhelm the individual and family members. Still, it’s never too early to think about the future. By looking ahead, family members can avoid making a decision on short notice, and instead create a plan that accommodates health and well-being.
Arranging support for a person with Lewy body dementia may be simple at first. Family members may be able to provide all the needed care. But since LBD is a progressive disease, care at home may not be workable for long. This is especially true if the person with LBD has behavioral symptoms.
A supportive community that offers memory care can benefit those with LBD by providing a safe and secure environment, specially trained professionals and on-site support services that include family members in decision-making.
The Cabana at Jensen Dunes offers innovative and affordable memory care services. Located near Port St. Lucie on Florida’s east coast, the community features a positive, welcoming culture with programs for all residents. Team members receive training in memory impairment and dementia care. They commit to knowing all residents personally and to compassionately supporting their needs.
Contact the Cabana at Jensen Dunes at 772-332-1000 or get a free copy of our Guide for Finding the Right Memory Care Community.