A health condition that causes a decline in mental function and occurs when clumps of proteins (known as Lewy bodies) begin to build up in the brain cells is called Lewy body dementia (LBD). These clusters cause damage to certain parts of the brain responsible for thinking, behavior, movement, and sleep. Usually, this condition worsens over time, and it cannot be cured. That’s why the treatment goal is to relieve the symptoms, prevent life-threatening complications, slow down the progression of the disease, and improve your quality of life. Doctors often prescribe medications and therapies to manage LBD.
Furthermore, LBD affects about 1 million people in the U.S., which makes it the second most common type of dementia after Alzheimer’s disease, according to the U.S. National Institute of Aging.
Types of Lewy Body Dementia
Healthcare professionals have divided this type of dementia into 2 categories based on which part of the brain is affected more. These include:
- Dementia with Lewy bodies (DLB) – This type often causes cognitive and memory problems, which are similar to the symptoms of Alzheimer’s disease. Sometimes, people may also experience movement problems, but they often happen later.
- Parkinson’s disease dementia – In this case, movement problems start first (similar to Parkinson’s disease). However, cognitive and memory problems may occur later.
What Are The Symptoms of Lewy Body Dementia?
This type of dementia often causes multiple symptoms, and they can be different among people who suffer from it. Check some examples below:
- Cognitive symptoms – These include memory loss, problems with focusing, confusion, hallucinations, and difficulty understanding or using words.
- Mood and behavioral symptoms – For example, depression, anxiety, delusions (believing in things that are not true), apathy, or you may feel restless or angry.
- Movement symptoms – People usually experience muscle stiffness, difficulty shuffling steps, tremors, lack of facial expressions, speech and swallowing problems, and problems with balance.
- Nervous system symptoms – Most people with LBD have problems with autonomic functions, including body temperature, blood pressure, digestion, and bladder or bowel control. They may also experience dizziness, extreme tiredness (fatigue), loss of smell, and others.
- Sleep issues – People with LBD often have difficulty falling and staying asleep. They may also act out dreams (REM sleep behavior disorder) and feel sleepy during the day.
Do not hesitate to see a doctor if any of the previous symptoms occur.
Causes and Risk Factors
This type of dementia happens when Lewy bodies (alpha-synuclein) begin to build up in the brain cells. They cause damage to certain parts of the brain, mostly to those that control thinking and memory. Healthcare providers do not fully understand what exactly causes LBD, but they have found some factors that could increase the risk. Check some of them below:
- Age – People over 60 years old are more likely to develop Lewy body dementia.
- Sex – According to some data, LBD occurs more frequently in men than women.
- Genetics – A mutation in the GBA or SNCA genes may increase your risk of LBD. However, not everyone who has these abnormal genes develops this type of dementia.
- Family history – If you have a relative with Parkinson’s disease or Lewy body dementia, your risk of developing them significantly increases.
- REM sleep behavior disorder (RBD) – This condition is usually strongly linked with an increased risk of Lewy body dementia.
- Vascular diseases – People with hypertension (high blood pressure), high cholesterol (hyperlipidemia), and diabetes are at increased risk for LBD.
- Long-term toxin exposure – People who are continuously exposed to air pollutants or heavy metals are at increased risk for this type of dementia.
- Infections – There are some pathogenic organism infections that may elevate your risk for LBD.
What Are The Potential Complications of Lewy Body Dementia?
People with LBD may experience serious complications, especially if the condition is poorly managed. Check some examples below:
- Pneumonia (including aspiration pneumonia)
- Needing supporting devices for walking or moving
- Falls that increase the risk of trauma
- Heart issues
- Eating, swallowing, or speaking issues
- Mental disorders (such as depression, anxiety, and others)
- Suicidal thoughts or behavior – If you or a loved one has suicidal thoughts, immediately call or text 988 in the U.S. or the emergency number in your country
- Orthostatic hypotension (low blood pressure)
The previous list does not contain all possible complications of Lewy body dementia. In any case, you can consult with your physician about ways to reduce the risk or even prevent them. Unfortunately, there is no way to prevent Lewy body dementia because doctors do not fully understand what exactly causes it.
Diagnosis
Typically, to diagnose and treat LBD, people require a healthcare team, which includes neurologists, psychiatrists, neuropsychologists, and geriatricians. Most of the time, the diagnosis starts with a neurological and physical examination. Doctors may also ask some questions about symptoms and family history to get more clues about the disease. In any case, to confirm or exclude LBD, doctors will perform the following tests and procedures. Examples include:
- Blood tests
- CSF (cerebrospinal fluid) testing
- Skin biopsy – During this procedure, doctors will take a small sample of tissue for testing.
- Imaging studies – The following tests are often used to get detailed images of the brain and surrounding tissues. Physicians usually perform MRI (magnetic resonance imaging) scans, CT (computed tomography) scans, PET (positron emission tomography) scans, and SPECT.
- Sleep study
Treatment
It is not possible to cure this condition, and the treatment focuses on relieving the symptoms, preventing life-threatening complications, and improving your quality of life. Doctors often recommend medications and therapies to manage the symptoms of LBD.
Medicines
These include:
- Carbidopa-levodopa to treat movement problems
- Antidepressants (including SSRIs or selective serotonin reuptake inhibitors) to treat depression
- Clonazepam and Melatonin to help with sleep problems
- Memantine to relieve early symptoms of LBD
- Cholinesterase inhibitors (including Rivastigmine, Galantamine, and Donepezil) to improve memory and thinking. In some cases, these medications may help with hallucinations.
- Antipsychotics (such as Pimavanserin, Clozapine, Quetiapine, and Aripiprazole) to treat hallucinations that do not improve with cholinesterase inhibitors
In some cases, physicians may recommend additional medicines to control the nervous system symptoms (such as dizziness).
Therapies
- Occupational therapy – This therapy often helps people stay independent by teaching measures to manage daily activities.
- Physical therapy – During this therapy, therapists will help you improve strength, balance, and ability to move by teaching specific physical exercises.
- Speech therapy – This treatment is used to help with speaking and swallowing problems.
Frequently Asked Questions
What is the life expectancy of someone with Lewy body dementia?
Life expectancy varies depending on age, overall health, and how quickly the disease progresses. On average, people live about 5 to 8 years after diagnosis, although some may live for more than 10 years with appropriate medical care and support.
How is Lewy body dementia different from Alzheimer’s disease?
Although both conditions cause dementia, Lewy body dementia is more likely to cause early visual hallucinations, fluctuating attention and alertness, movement problems similar to Parkinson’s disease, and REM sleep behavior disorder. Memory loss is often less severe in the early stages than it is in Alzheimer’s disease.
Is Lewy body dementia hereditary?
Most cases are not inherited. However, certain genetic changes, such as mutations in the GBA and SNCA genes, may increase the risk of developing the disease. However, having these gene mutations does not guarantee that someone will develop LBD.
Can Lewy body dementia be mistaken for another condition?
Yes. LBD is commonly misdiagnosed as Alzheimer’s disease, Parkinson’s disease, frontotemporal dementia, or even certain psychiatric disorders because many of the symptoms overlap. A thorough evaluation by a specialist can improve diagnostic accuracy.
Are hallucinations common in Lewy body dementia?
Yes. Recurrent visual hallucinations are one of the hallmark symptoms of LBD and often appear early in the disease. Some people may also experience auditory or tactile hallucinations, although these are less common.
Can people with Lewy body dementia drive?
Driving may become unsafe as the disease progresses due to slowed reaction time, impaired judgment, visual hallucinations, movement difficulties, and fluctuating attention. A healthcare provider can determine whether it is still safe for someone with LBD to drive.
Why should people with Lewy body dementia be careful when taking antipsychotic medications?
Many people with LBD are extremely sensitive to certain antipsychotic medications. These drugs can worsen confusion, movement problems, sedation, and, in severe cases, cause life-threatening reactions. Therefore, they should only be used under close medical supervision when absolutely necessary.
Can lifestyle changes help people with Lewy body dementia?
Yes. Although lifestyle changes cannot stop the disease, regular physical activity, a balanced diet, good sleep habits, mental stimulation, fall-prevention strategies, and strong social support may help maintain function and improve quality of life.
When should someone with Lewy body dementia go to the emergency department?
Immediate medical attention is needed if the person develops sudden confusion that is much worse than usual, severe falls or head injuries, chest pain, difficulty breathing, choking, signs of pneumonia, severe dehydration, or sudden inability to walk or swallow.
Can people with Lewy body dementia continue living independently?
Many people with early-stage LBD can remain independent with appropriate support and home safety modifications. However, as the disease progresses, increasing assistance with daily activities, medication management, and personal care is usually needed to ensure safety and maintain quality of life. If you have additional questions, ask your healthcare professional.
