Lewy body dementia, also known as dementia with Lewy bodies, is the second most common form of dementia, after Alzheimer’s disease. This progressive condition affects memory and other mental functions. Those with Lewy body dementia can manage their symptoms with lifestyle changes and medications, but there is no absolute cure. In this post, we tell you everything you need to know about Lewy body dementia.
What is Lewy Body Dementia?
Lewy body dementia is a progressive form of dementia. It occurs when protein deposits build up in the nerve cells of the brain. As a result, it affects a person’s thoughts, memory, and motor control.
This form of dementia shares several symptoms with other diseases, including Alzheimer’s disease and Parkinson’s disease. In addition, people with Lewy body dementia typically experience vivid visual hallucinations and changes in attention and alertness.
According to the Lewy Body Dementia Association, the latest Lewy body dementia research suggests that 1.4 million people in the United States have the condition. It accounts for twenty percent of all cases of dementia.
Regardless, many doctors remain unaware of the prevalence and symptoms of Lewy body dementia.
Lewy Body Dementia Stages
Unlike many other cognitive diseases, Lewy body dementia does not progress through identifiable stages. However, many people talk about the condition in terms of the early stages and final stages of Lewy body dementia.
Lewy Body Dementia Causes and Risk Factors
Lewy body dementia results from the buildup of proteins in the brain. These protein deposits are called Lewy bodies. They may also occur in the brains of people with Parkinson’s disease.
Those with Lewy body dementia often have characteristics of Alzheimer’s disease, such as plaques and tangles in the brain.
It is not known why Lewy bodies develop in the brains of some people and not others, although several factors are thought to increase a person’s risk. These include:
Adults over 60 years of age are at greater risk of Lewy body dementia than younger people.
Men are more likely to develop dementia with Lewy bodies than women.
When it comes to Lewy body dementia, genetics may play a role. Those with a family member with Lewy body dementia or Parkinson’s disease have a higher risk of developing the condition.
Research suggests that having depression can increase Lewy body dementia risk.
Lewy Body Dementia Symptoms
Lewy body dementia symptoms and signs resemble those of Alzheimer’s and Parkinson’s disease. The most common signs of Lewy body dementia include:
Often, people will begin to hallucinate in the early stages of the illness. These recurring hallucinations involve seeing things that aren’t there, including animals and people. Hallucinations tend to be visual in nature but may also include hallucinations of sound, smell, or touch.
Changes in thinking and memory—similar to those seen in Alzheimer’s disease—affect people with Lewy body dementia. Examples include feeling confused, forgetting things, and an inability to pay attention. People may also have visual-spatial problems, daydreams, and disorganized speech.
Lewy body dementia causes some of the same signs as Parkinson's disease, including rigid muscles, tremors, slowed movement, and changes in gait.
Issues Regulating Body Function
People are less able to regulate their autonomic nervous system. This means that they may experiences changes in blood pressure, pulse, and digestion. Side effects of these issues include dizziness, loss of balance, and constipation.
Changes in mood can occur along with other symptoms. People with dementia may experience depression or a loss of motivation at some stage of their illness.
Lewy Body Dementia Diagnosis
There is no one Lewy body dementia test. To diagnose the condition, your doctor will need to determine if there has been a progressive decline in your cognitive functions.
Two other symptoms, out of the following, must also be present:
- Recurrent visual hallucinations
- Changes in alertness and cognition
- Symptoms of Parkinson’s disease (loss of motor function)
- REM sleep behavior disorder
Other tests can help your doctor support a diagnosis of Lewy body dementia. These include:
- Blood tests, to look for specific substances in the blood, known as biomarkers
- Iodine-MIBG myocardial scintigraphy, to measure nerve function in the heart's blood vessels
- Nuclear imaging tests
- Sleep studies
To rule out other conditions that have similar symptoms, you may need to undergo one or more of the following:
- Assessment of memory and thinking skills
- Brain scans
- Neurological tests
- Physical examination
Lewy Body Dementia Treatment
While there is no Lewy body dementia cure, many treatments can provide relief from specific symptoms. Work with your doctor and other healthcare professionals to find the right treatment plan for you. Treatment options include:
Taking Medication for Lewy Body Dementia
Several medications may treat Lewy body dementia symptoms. If you have issues with memory, thought, and judgment, your doctor may prescribe Alzheimer's disease medications called cholinesterase inhibitors. These drugs may also improve alertness and reduce hallucinations. For rigid muscles and movement issues, some people take Parkinson's disease medications. However, these drugs may worsen confusion and hallucinations.
If you have other symptoms, such as depression or sleep issues, your doctor may recommend appropriate medications. Some Lewy body dementia medications to avoid include first-generation antipsychotic medications and drugs with anticholinergic properties.
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Keep track of your medication intake, especially during periods of confusion, by using a pill organizer.
Changing the Home Environment
Reduce clutter and distractions around the home to keep people with Lewy body dementia safe from falls and confusion. Quiet spaces, without distracting noises, are best.
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It’s also a good idea to fit safety features—such as grab bars and toilet safety rails—throughout the home. This step is especially important when symptoms get worse, as safety devices can prevent falls and injury caused by poor balance, muscle rigidity, and slow movement.
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Creating Structure and Routine
People with dementia thrive on structure because established routines reduce the demands on a person’s memory. To create structure, keep everyday items in the same place each day so that people with dementia can remember where they are.
Use a whiteboard or blackboard to keep track of schedules and appointments. Break all tasks into smaller, more manageable steps that are less daunting to dementia patients.
Engaging in Regular Exercise
Exercise is important for everyone, including those with Lewy body dementia. Physical activity can improve balance, strength, flexibility, and mood. Good exercises for people with Lewy body disease include:
Exercise may also slow the loss of cognitive function in people with dementia while improving heart health, reducing constipation, and encouraging a restful sleep.
Slow down mental decline by consistently challenging your brain. Anything that stimulates the mind, from games and crossword puzzles to simple math equations, can be beneficial. Aim to take part in activities that require mental skills several times daily.
Stress and anxiety can make the symptoms of dementia worse. Spend some time every day engaging in relaxing activities to improve mood and enhance mental function. Examples of good relaxation activities include:
- Listening to soothing music
- Spending time with animals
- Massage therapy
- Deep breathing techniques
Caregivers should aim to reduce sources of stress for people with Lewy body dementia wherever possible.
Establishing a Night-time Routine
Behavioral issues often get worse at night. This is similar to sundowner’s syndrome, which occurs in people with Alzheimer’s disease. To counteract this, establish a calming night-time ritual. Avoid television, too much activity or stimulation, and sources of stress.
Encourage restful sleep by limiting or avoiding caffeine intake during the day, especially in the hours before bed. Where possible, avoid daytime naps. Exercise during the day also encourages healthy sleep.
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For night-time safety, use night lights throughout the house, place a fall mat by the bed, and use a bed rail for added security.
Providing Caregiver Reassurance
Caregiver reactions to people with dementia play an important role in patient behavior. Although it can be difficult at times, caregivers should remain calm and offer comforting responses to challenging behaviors and symptoms. Avoid correcting or interrogating someone with dementia. Instead, reassure them and validate what they say.
Also, it can be helpful if caregivers use simple language, speak clearly and slowly, and maintain eye contact when speaking to the person with dementia. Use visual cues where possible.
Seeking Emotional Support
People with dementia and their caregivers should seek emotional and social support. Living with Lewy body dementia can bring up many emotions, including anger, fear, grief, and confusion. See a counselor or psychotherapist to help deal with these emotions and to learn some coping skills. Stay positive—it is still possible to enjoy life when dealing with dementia.
Caregivers can prevent burnout by asking for help when they need it, looking after their physical and mental health, and joining a support group. Also, be sure to check out these great tips on caring for the elderly at home.
Lewy Body Dementia Prognosis
For those diagnosed with Lewy body dementia, life expectancy is between five and seven years after onset. The rate of disease progression during this period varies from person to person.
People usually die as a result of complications associated with Lewy body dementia, such as pneumonia or another illness.
Other complications include:
- Aggressive behavior
- Risk of falls and injury
- Severe dementia
Lewy Body Dementia Prevention
Unfortunately, because the exact cause of Lewy body dementia is unknown, experts do not know how to prevent the condition. As it is linked to depression, looking after your mental health may help you stave off Lewy body dementia, although there are no guarantees.
Try to lead as healthful a lifestyle as possible by:
- Eating a balanced diet
- Exercising regularly
- Maintaining a healthy weight
- Monitoring your blood pressure, cholesterol levels, and blood sugar
- Reducing stress through meditation and deep breathing techniques
- Staying mentally and socially engaged
Living with Lewy Body Dementia
Being diagnosed with Lewy body dementia may be overwhelming and frightening. Work with your healthcare team to find the best treatments for your specific needs. Remember to seek social and emotional support during this difficult time. Caregivers of those with Lewy body dementia should also take time out to look after themselves.
Although there is no cure, people can manage their symptoms and maintain their quality of life for as long as possible through lifestyle changes and medications.