What Is Lewy Body Dementia, And How Does It Affect People?
Dementia is an umbrella term for various neurological disorders that affect a person's thinking ability, as well as their body. The most common form of dementia is Alzheimer's disease, followed by vascular dementia. The third most common type is called Lewy body dementia (LBD).
What is Lewy body dementia?
Lewy body dementia, also called dementia with Lewy bodies, involves abnormal protein deposits in the brain. These deposits are made from a protein called alpha-synuclein and have been named Lewy bodies, after Fritz Lewy, a doctor who discovered the proteins and how they affect the mind.
Lewy bodies usually develop in nerve cells found in brain areas associated with memory, movement, and thinking skills. As a result, a person with Lewy bodies experiences a decline in mental functions.
According to the Lewy Body Dementia Association, Lewy body dementia affects 1.4 million adults in the United States. Usually, symptoms appear after age 50, though they can also appear earlier. All genders may be affected by LBD, but men seem to be somewhat more likely to develop the disease. While there is no cure for dementia with Lewy bodies, clinical trials are continually being conducted as experts develop treatments that can alleviate symptoms and slow neurodegeneration.
LBD vs Parkinson’s disease
When patients experience significant movement problems and then develop dementia, the condition is Parkinson’s disease dementia. A Parkinson’s diagnosis occurs before a Lewy body dementia diagnosis. In this case, physical symptoms develop first with cognitive symptoms showing later.
Potential causes
Scientists haven't yet pinpointed the exact cause of Lewy body dementia. People researching the disease have learned about factors that increase a person's risk of developing the disorder. The greatest risk factor for dementia with Lewy bodies is aging. Other risk factors include certain health conditions, including Parkinson's disease and REM sleep behavior disorder. Environmental risk factors include exposure to lead, manganese, and certain pesticides.
Potential symptoms
People with Lewy body dementia may experience various symptoms. Because it is a progressive dementia, symptoms usually begin slowly, and then intensify with time. Ultimately, Lewy body dementia ends in death. Symptoms may progress in a time frame that ranges anywhere from 2 to 20 years before death occurs.
Visual hallucinations
While hallucinations often appear in the late stages of other forms of dementia, they tend to occur early on in people with LBD. About 80% of people with LBD experience hallucinations that involve seeing, hearing, or smelling things that aren't there. Recurrent visual hallucinations are one of the distinctive symptoms that aid in the diagnosis of LBD.
Concentration issues
A person with LBD may struggle to focus their attention. Alternatively, they may struggle to remain alert and find themselves falling asleep throughout the day.
Thinking difficulties
LBD often causes symptoms involving thinking and may make a person's thoughts feel disorganized or illogical. One of the other distinctive symptoms of LBD is that cognitive abilities may fluctuate day to day. As the disease progresses, thinking problems can interfere with daily life, as a person struggles to remember which words to say or even where they are or what time it is.
Movement issues
Not all people with LBD develop significant movement problems, but some do. A change in movement abilities can take place early on, or as the disease progresses. For example, a patient may develop muscle rigidity, or they may experience poor coordination or balance problems. The way they walk may change, as might their handwriting, facial expressions, posture, or voice.
Sleep problems such as REM sleep behavior disorder
People with LBD often have sleep problems. Some of these are severe enough to be diagnosed as disorders in their own right. For example, a person with LBD is more likely to experience REM sleep behavior disorder, excessive daytime sleepiness, insomnia, and restless legs syndrome.
Mood changes
People with LBD often develop mood symptoms as their thinking abilities decline. For example, depression, a lack of interest in activities, anxiety, or agitation could occur. In severe cases, patients may experience delusions (strongly held false beliefs) or paranoia or (a severe and irrational lack of trust of other people).
Miscellaneous symptoms
Sometimes people with LBD experience other symptoms, often related to their body functions, because of how their autonomic nervous system is being impacted. These can include body temperature changes, blood pressure changes, dizziness, fainting, constipation, a reduced sense of smell, sexual dysfunction, and more.
Lewy body dementia symptoms worsen as the disease progresses. For example, a person's memory may become worse over time. They may also become more prone to injury, or experience physical or mental changes that keep them from being able to take care of themselves, such as a loss of control over automatic functions. On average, a person dies from Lewy body dementia eight years after developing it. However, in some cases, people live up to 20 years after developing LBD.
Diagnosing
If you or a loved one are experiencing any of the signs of Lewy body dementia, see a doctor. A doctor can ask questions and order the appropriate tests to determine if a person has LBD or something else going on.
Much of the process of diagnosing LBD involves ruling out other possible causes for symptoms. Doctors may order laboratory tests to rule out other diseases and vitamin deficiencies. They may also order brain imaging to look for changes in the brain or other potential causes of dementia. Neuropsychological tests can assess memory and changes to the mind and emotions.
Prevention
Experts haven't yet identified a clear way to prevent Lewy body dementia. However, taking care of basic health by eating a well-balanced diet, exercising regularly, easing stress, sleeping on a regular schedule, avoiding smoking, and spending time with others may help.
Treatment
There is no cure for LBD and no medication to stop or reverse the progression of symptoms. Instead, there are ways to treat common symptoms which often involve medications and different types of therapy.
For example, a variety of drugs are available to treat symptoms related to the mind, movement, sleep disorders, and mood problems. Patients may also participate in physical and other types of therapy such as speech therapy, occupational therapy, and mental health counseling.
Your healthcare provider will review all the potential benefits and risks of treatment options. Certain medications may hold a greater risk than others and can make symptoms worse. Selective serotonin reuptake inhibitors are often used to treat depression that accompanies LBD. While antipsychotic medications can help relieve symptoms associated with LBD, they may also cause patients to develop neuroleptic malignant syndrome, eventually resulting in kidney failure.
If you’d like to learn more about the treatment of LBD, the Lewy Body Dementia Association has gathered several resources that can provide guidance and support.
Supporting a loved one
Receiving a Lewy body dementia diagnosis often feels upsetting, both for the person who received it and their family members. The person diagnosed and those close to them may feel upset, angry, depressed, confused, or scared when thinking about the future.
If your loved one has LBD, support and encourage them, reminding them that they can still live a full life. Encourage them to participate in activities that will keep them functioning for as long as possible, including exercising, socializing, and doing puzzles. Help them acquire equipment that will make everyday tasks easier as their symptoms progress. You can also connect them with support groups, where they can meet people who are experiencing similar challenges. The Lewy Body Dementia Association has a list of local support groups for people with LBD.
Acting as a caregiver for someone with LBD can be tiring and lead to burnout. While the focus is on the person who is sick, caregivers and family are also emotionally impacted. Engaging in self-care is important for everyone involved in the situation.
Seek help
If you, a family member, or another loved one has Lewy body dementia, consider professional counseling. A therapist can help a person with LBD manage the slew of emotions that arise after receiving such a serious diagnosis. A therapist may be able to help a person gain calm and acceptance while teaching them techniques to help them live better. As LBD often involves a loss of motivation, therapy can be one way to help bring some of that motivation back.
Similarly, caregivers and loved ones of those with LBD may benefit from counseling, as well. A therapist can help caregivers manage difficult emotions, such as sadness or frustration. They can also help with strategies for maintaining patience and kindness during the more difficult moments of caring for someone with LBD.
Online therapy can provide benefits to people coping with LBD and their caregivers alike. And with online therapy, you don’t have to worry about being put on a waiting list or getting to an office across town. Instead, you attend sessions from the comfort of your home, making the process more comfortable and convenient.
Research shows that online therapy is effective. One study reported that 12 weeks of online treatment led to improvements in depression and anxiety, and these improvements were sustained six months later.
Takeaway
How long can you live with Lewy body?
Lewy body dementia (LBD) is a progressive neurodegenerative disorder that affects thinking, behavior, and movement. The progression of Lewy body dementia can vary significantly among individuals, and the duration of survival after diagnosis is influenced by various factors. On average, people with Lewy body dementia may live approximately 5 to 8 years after the onset of symptoms, although this can vary.
How do you confirm Lewy body dementia?
Diagnosing Lewy body dementia (LBD) can be challenging, as its symptoms can overlap with other neurodegenerative disorders, such as Alzheimer's disease and Parkinson's disease. There is no definitive test for LBD, so a comprehensive evaluation by healthcare professionals is crucial. The diagnostic process typically involves a combination of medical history assessments, clinical examinations, and various tests. Here are key steps in having Lewy body dementia diagnosed:
- Clinical Evaluation: A healthcare professional, often a neurologist or geriatrician, will conduct a detailed clinical evaluation. This includes a thorough assessment of medical history, symptoms, and their progression.
- Cognitive and Neuropsychological Testing: Cognitive assessments, including neuropsychological testing, are conducted to evaluate memory, attention, language, and other cognitive functions. Specific patterns of cognitive impairment may suggest LBD.
- Physical Examination: A neurological examination helps assess motor function, balance, and other physical signs that may be indicative of Lewy body dementia.
- Diagnostic Criteria: The diagnosis is often made based on established diagnostic criteria, such as the criteria outlined in the "McKeith criteria" for probable or possible LBD. These criteria consider the presence and duration of various symptoms, including cognitive, visual, and motor symptoms.
- Brain Imaging: Structural brain imaging, such as MRI or CT scans, may be performed to rule out other conditions and identify specific brain changes consistent with LBD. Functional imaging, like SPECT or PET scans, can also be used to assess brain activity.
- Laboratory Tests: Blood tests and other laboratory assessments may be conducted to rule out other potential causes of cognitive impairment.
- Caregiver Input: Input from caregivers and family is essential. They can provide valuable information about the person's symptoms, daily functioning, and behavioral symptoms or behavior changes.
What is the difference between Alzheimer's and Lewy body dementia?
Alzheimer's disease and Lewy body dementia (LBD) are two distinct neurodegenerative disorders, though they have some similar symptoms. Here are the key differences between Alzheimer's disease and Lewy body dementia:
Underlying pathology:
- Alzheimer's Disease: The primary pathology in Alzheimer's disease is the accumulation of beta-amyloid plaques and tau tangles in the brain. These abnormal protein deposits interfere with communication between neurons and lead to the death of brain cells.
- Lewy Body Dementia: LBD is characterized by the presence of Lewy bodies, which are abnormal protein deposits containing alpha-synuclein. These deposits disrupt normal brain function and are found in various brain regions.
Cognitive symptoms:
- Alzheimer's Disease: Early symptoms of Alzheimer's typically include progressive memory loss, impaired judgment, difficulty planning and problem-solving, and language difficulties.
- Lewy Body Dementia: Cognitive symptoms in LBD can include fluctuating attention and alertness, visual hallucinations, and difficulties with executive function. Memory impairment may be less prominent in the early stages.
Motor symptoms:
- Alzheimer's Disease: Motor symptoms are not a primary characteristic of Alzheimer's disease. In the later stages, individuals with Alzheimer's may experience difficulties with mobility or slow movement due to overall physical decline.
- Lewy Body Dementia: LBD is associated with Parkinsonian movement symptoms, such as tremors, stiffness, and difficulties with balance and coordination. These symptoms can be present early in the course of the disease.
Visual hallucinations:
- Alzheimer's Disease: While individuals with Alzheimer's may experience hallucinations, they are less common than in Lewy body dementia.
- Lewy Body Dementia: Visual hallucinations are a common feature of LBD, often occurring early in the disease.
Fluctuating cognitive function:
- Alzheimer's Disease: Cognitive decline in Alzheimer's disease tends to progress gradually and steadily.
- Lewy Body Dementia: Cognitive symptoms in LBD can fluctuate, with periods of relative clarity and alertness alternating with episodes of confusion.
Is Lewy body the worst dementia?
It's not accurate to categorize one form of dementia as "the worst," as the impact of dementia can vary widely among individuals. Lewy body dementia (LBD) is a challenging and complex neurodegenerative disorder, but different types of dementia, including Alzheimer's disease and vascular dementia, also present unique challenges.
The severity and progression of dementia depend on various factors, including the underlying cause, individual differences, and the presence of other health conditions. Each person's experience with dementia is unique, and what may be challenging for one individual might not be the same for another. For individuals experiencing LBD or other forms of dementia, joining support groups may be beneficial.
Who is at high risk for Lewy body dementia?
Lewy body dementia (LBD) can affect individuals of various ages and backgrounds, but certain factors may increase the risk of developing the condition. It's important to note that having one or more risk factors does not guarantee the development of Lewy body dementia, and the presence of the condition can vary among individuals. Some potential risk factors for Lewy body dementia include:
- Age: The risk of LBD increases with age. It often occurs in people aged 50 and older, and the risk tends to rise with advancing age. Age may also worsen LBD symptoms as the condition progresses.
- Gender: Men may have a slightly higher risk of developing LBD than women, although more research is needed to understand gender-related risk factors fully.
- Family History: There may be a genetic component to LBD, as a family history of the disorder appears to increase the risk.
- Other Neurodegenerative Conditions: Individuals with a history of other neurodegenerative conditions or movement disorders, such as Alzheimer's disease or Parkinson's disease, may be at a higher risk of developing LBD.
- Mild Cognitive Impairment (MCI): People with mild cognitive impairment may have an increased risk of progressing to LBD. MCI involves cognitive changes that are more noticeable than expected for a person's age but not severe enough to meet the criteria for dementia.
- REM Sleep Behavior Disorder (RBD): RBD is a sleep disorder characterized by acting out vivid and often unpleasant dreams. It has been identified as a potential early marker for the development of LBD.
Is Lewy body dementia painful?
Dementia with Lewy bodies is not typically associated with physical pain. However, individuals with LBD may experience various symptoms and challenges that can impact their overall well-being. These symptoms can include cognitive changes, motor symptoms, psychiatric symptoms, and fluctuations in alertness. While these symptoms are not inherently painful, they can contribute to distress and affect the quality of life for individuals with LBD.
Can you survive Lewy body dementia?
Lewy body dementia (LBD) is a progressive and incurable neurodegenerative disorder, meaning symptoms start slowly and worsen over time. It impacts cognitive function, behavior, and motor control. While there is currently no cure for LBD, individuals diagnosed with the condition can survive for a variable period, and the duration of survival can vary widely among individuals.
According to the Lewy Body Dementia Association, individuals with Lewy body dementia may live approximately 5 to 8 years after the onset of symptoms, although this can be shorter or longer depending on various factors. The course of the disease is highly variable, and the rate of progression can differ among individuals.
What is the final stage of Lewy body dementia?
Lewy body dementia (LBD) is a progressive neurodegenerative disorder, and the final stage can be characterized by a significant decline in cognitive and physical functioning. However, it's important to note that the progression of the disease can vary widely among individuals, and not everyone with LBD will follow the same trajectory.
In the later stages of Lewy body dementia, individuals may experience profound cognitive decline, significant motor impairment, and increased dependence on others for daily activities. Some common features of the final stages of LBD include:
- Severe Cognitive Decline: Memory loss, confusion, and impaired cognitive function become more pronounced, affecting communication and the ability to recognize loved ones.
- Motor Symptoms: Parkinsonian movement disorder symptoms, such as stiffness, tremors, and difficulties with balance and coordination, can become more severe, impacting mobility.
- Functional Decline: Individuals may have difficulty with basic activities of daily living, including eating, dressing, and personal hygiene. Dependence on caregivers for assistance increases.
- Difficulty Swallowing: Swallowing difficulties (dysphagia) may arise, increasing the risk of aspiration pneumonia and nutritional challenges.
- Increased Vulnerability to Infections: Individuals with advanced Lewy body dementia may be more susceptible to infections due to weakened immune function and overall physical decline.
- Limited Communication: Speech and language abilities decline, and individuals may have difficulty expressing themselves verbally.
- Behavioral and Psychiatric Symptoms: Behavioral and psychiatric symptoms, such as hallucinations, delusions, and mood disturbances, may persist or become more challenging to manage. These may be hard to treat due to a reaction called neuroleptic malignant syndrome which may occur in patients with Lewy body dementia when treated with anti-psychotic medication.
Do people with Lewy body dementia sleep a lot?
Sleep disturbances are common in Lewy body dementia (LBD), and individuals with this condition may experience a variety of sleep-related issues. While it's not accurate to generalize that people with LBD sleep a lot, clinical trials show that changes in sleep patterns are frequently observed throughout the course of the disease. Some sleep-related symptoms in Lewy body dementia include:
- Insomnia: Individuals with LBD may have difficulty falling asleep or staying asleep, leading to insomnia. Factors contributing to insomnia in LBD may include cognitive and motor symptoms, anxiety, or medication side effects.
- Excessive Daytime Sleepiness: Despite difficulties with nighttime sleep, individuals with LBD may experience excessive daytime sleepiness. This can contribute to daytime napping or prolonged periods of drowsiness.
- Fluctuations in Alertness: One of the hallmark features of Lewy body dementia is fluctuating cognitive function, and this can extend to fluctuations in alertness and wakefulness. Individuals may experience periods of increased confusion and drowsiness.
- REM Sleep Behavior Disorder (RBD): RBD is a common sleep disorder in LBD, characterized by vivid and often physically acting out dreams during REM (rapid eye movement) sleep. It can result in disruptive sleep, posing a safety risk for both the individual and their sleep partner.
- Restless Leg Syndrome: Restless Legs Syndrome is reported to be more common in individuals with Lewy body dementia compared to the general population.
- Hallucinations During Sleep: Visual hallucinations, a common symptom of LBD, may extend into the sleep period. Individuals may see people or objects that are not present, contributing to disturbed sleep.
Are people with Lewy body dementia aggressive?
Behavioral and psychiatric symptoms can be a significant aspect of Lewy body dementia (LBD), and aggression is one of the potential behavioral changes that some individuals with LBD may experience. However, it's important to recognize that not everyone with LBD will exhibit aggressive behaviors, and the prevalence and severity of these behaviors can vary widely among individuals.
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