Dementia With Lewy Bodies
|Other names||Diffuse Lewy body disease, dementia due to Lewy body disease|
|Microscopic image of a Lewy body in a neuron of the substantia nigra scale bar=20 microns|
|After the age of 50, median 76|
|Average survival 8 years from diagnosis|
|Frequency||About 0.4% of persons older than 65|
Dementia with Lewy bodies is a type of dementia characterized by changes in sleep, behavior, cognition, movement, and regulation of automatic bodily functions. Memory loss is not always an early symptom. The disease worsens over time and is usually diagnosed when cognitive decline interferes with normal daily functioning. Together with Parkinson’s disease dementia, DLB is one of the two Lewy body dementias. It is a common form of dementia, but the prevalence is not known accurately and many diagnoses are missed. The disease was first described by Kenji Kosaka in 1976.
Is Dementia A Symptom Of Both
One of the biggest similarities between PD and LBD is dementia. Some studies have found that approximately 78 percent of PD patients will eventually develop dementia.4 More specifically, almost half of Parkinsons patients will develop a certain type of dementia called Parkinsons Dementia, usually 10-15 years after their initial PD diagnosis.3 People with Parkinsons Dementia commonly experience poor memory and concentration, slowed thinking, confusion, depression, emotional changes, delusions, and visual hallucinations.
Parkinsons dementia is different than LBD, mainly in which symptoms occur first . Patients with Parkinsons Dementia will first show Parkinsons motor symptoms, followed by dementia many years after diagnosis. Conversely, LBD patients will first show dementia symptoms and may show motor symptoms later.3
Typical Timescale For Pdd
According to the Parkinsons Foundation, PDD is typically diagnosed when a person living with Parkinsons disease experiences cognitive decline after a year or more of motor symptoms. But in most cases, people experience many years of tremors, slowness of movement, and muscle cramps before showing signs of significant cognitive decline. The Weill Institute for Neurosciences estimates the average time from onset of movement problems to developing dementia is 10 years. An estimated 50% to 80% of people with Parkinsons will eventually experience Parkinsons disease dementia, says the Alzheimers Association.
How Does Lewy Body Disease Progress
Lewy body disease differs from Alzheimer’s disease in that the progression of the disease is usually more rapid. However, like Alzheimer’s disease it is a degenerative condition, eventually leading to complete dependence. Death is usually a result of another illness, such as pneumonia or an infection. The average lifespan after the onset of symptoms is about seven years.
Medications At The End Of Life
Many participants described stopping DLB medications near EOL. Occasionally this was associated with a decline:
I would swear in a court of law that the galantamine worked for her And when I couldnt get her to take it is really when I started noticing the decline.
Hospice commonly provided morphine for pain, breathing, or overall comfort. Many participants felt that morphine resulted in a peaceful death, but several participants described morphine as insufficient to address pain or causing paradoxical symptoms. Often hospice needed to supplement morphine with benzodiazepines. Multiple participants described using haloperidol from hospice comfort packs. In one case, this resulted in a severe reaction:
He looked at the strings hanging down from the overhead lights and he thought they were a noose. I mean, it wasn’t anything you know, anything I was worried about. I was just relating to how things had been going. And she suggested Haldol. And I didn’t research it About two, two and a half hours since he had his Haldol He was suddenly sitting upright Every muscle in his body was clenched. His mouth was clenched. It was opening and closing, opening and closing. His tongue was thrusting out. He almost bit his tongue off at one point and he was groaning and moaning, and he was in terrible pain His temperature skyrocketed From there, his kidneys shut down, and he was gone by Tuesday morning.
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What Does Progression In Stages Mean
There are many different types of dementia and all of them are progressive. This means symptoms may be relatively mild at first but they get worse with time, usually over several years. These include problems with memory, thinking, problem-solving or language, and often changes in emotions, perception or behaviour.
As dementia progresses, a person will need more help and, at some point, will need a lot of support with daily living. However, dementia is different for everyone, so it will vary how soon this happens and the type of support needed.
It can be helpful to think of dementia progressing in three stages:
These are sometimes called mild, moderate and severe, because this describes how much the symptoms affect a person.
These stages can be used to understand how dementia is likely to change over time, and to help people prepare for the future. The stages also act as a guide to when certain treatments, such as medicines for Alzheimers disease, are likely to work best.
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Prognosis For Lewy Body Dementia
Unfortunately, there is currently no cure for Lewy Body Dementia. The average life expectancy for people with LBD after the onset of symptoms is 5 to 8 years. However, individuals with Lewy Body Dementia have lived anywhere between 2 and 20 years depending on their age, the severity of their symptoms, and their other medical conditions.
The course of Lewy Body Dementia can vary across people, but is usually “progressive but vacillating.” In other words, across time, people decline, but there may be periods of return to a higher functioning level. This decline may be exacerbated by medications and/or infections/diseases.
Life Expectancy For Lewy Body Dementia
francis1505156449 over a year ago
over a year ago
First of all I am very sorry to hear that your mother isdiagnosed with such a difficult condition. Lewy body dementia is very difficultto treat and people with Lewy body dementia usually have severe reactions toantipsychotic medications which are usually very helpful in treating symptomssuch as delusions and hallucinations.
At the moment there is no cure forthis condition and average life expectancy, according to fewstudies, for a person with Lewy body dementia after the first symptoms appearis 7 years. But this doesnt have to mean anything because every person isdifferent and this also depends on some other factors such as age, the severityof symptoms, and coexisting medical conditions.
Since your mother is fullof energy I believe that she will beat the statistics.
over a year ago
In reply to danell34630 on 2012-01-17 – click to read
over a year ago
In reply to anonymous on 2015-06-16 – click to read
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Approximate Lewy Body Dementia Phases Symptoms And Considerations
Lewy Body Dementia Stage 1 Possibilities
Most caregivers are concerned/worried that something is not right. Symptoms from later stages can also appear this early on the continuum. At the end of this phase, cognitive impairment is difficult to deny.
Symptoms and subtle changes may include:
- Increased daytime sleep: two-plus hours
- Vision affected
- Hearing affected
- Speech difficulty
- Physical coordination diminished
- Posture altered
- Chronic runny nose
- Ability to learn new tasks affected
- Short term memory impacted
- Thinking/learning/ problem solving difficulties suggest dementia
- Mood: Depressed/Anxiety
- Able to engage independently in leisure activities
- Handwriting is affected
- Impairments with financial responsibilities
- May still be able to maintain employment
- May be able to hide symptoms
- Socialization still possible
- May accuse spouse of infidelity
Lewy Body Dementia Stage 2 Possibilities
Caregivers consult with an elder law attorney by this point: at very least have a Power of Attorney and Medical Power of Attorney document on the patient. Protect assets: family, friends, caregivers may be able to take financial advantage of LO. Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.
Symptoms are usually clearer by this point:
Increased difficulty with:
Lewy Body Dementia Stage 3 Possibilities
Lewy Body Dementia Stage 4 Possibilities
Lewy Body Dementia Stage 5 Possibilities
Strength to all!
Is Lewy Body Dementia Hereditary & What Is The Life Expectancy Of A Person With Lewy Body Dementia
Most patients suffering from Lewy Body Dementia prefer visiting a primary care physician at the initial stage. Diagnosing the disorder can be a real problem if the symptoms grow severe.
There are many families that have been affected by Lewy Body Dementia . However, it has been seen that very few individuals and even medical professionals are aware of the diagnostic criteria and symptoms. Some even dont have the idea whether or not the disease exists. Therefore, you should know about Lewy Body Dementia not only to save yourself but also your loved ones, families and friends. Lewy body dementia is a type of progressive dementia that comes only after Alzheimers disease dementia.
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How Is Parkinson Disease Treated
Parkinson disease can’t be cured. But there are different therapies that can help control symptoms. Many of the medicines used to treat Parkinson disease help to offset the loss of the chemical dopamine in the brain. Most of these medicines help manage symptoms quite successfully.
A procedure called deep brain stimulation may also be used to treat Parkinson disease. It sends electrical impulses into the brain to help control tremors and twitching movements. Some people may need surgery to manage Parkinson disease symptoms. Surgery may involve destroying small areas of brain tissue responsible for the symptoms. However, these surgeries are rarely done since deep brain stimulation is now available.
Diagnosis Of Lewy Body Dementia
No single test can be used to definitively diagnose Lewy Body Dementia. Currently, Lewy bodies can only be identified through autopsy. Therefore, the process of diagnosis is similar to that of diagnosing Alzheimer’s Disease and is designed to rule out other possible causes of a person’s symptoms.
A thorough diagnostic evaluation will include physical and neurological examinations , patient and family interviews , and psychological/psychiatric and neuropsychological testing. Click here to return to our previous in-depth discussion of each of these components of a diagnostic workup. In addition, brain imaging scans may be performed.
The following tests may be used in a psychological/psychiatric evaluation:
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Treating Parkinsons Disease Dementia
A treatment plan for PDD typically includes medications that boost the brains level of certain neurotransmitters and help improve memory and processing speed, Dr. Petrossian says. Exercise is also an important part of the treatment planDr. Petrossian recommends skill-based activities like boxing or dance to boost cognitive function as well as fitness. PDD symptoms should be monitored long-term by a neurologist, and in some cases a psychiatrist, says Dr. Okun. In many cases, physical, occupational, speech, and social work therapy can also be useful since PPD affects all aspects of life.
Cognitive Symptoms Of Lewy Body Dementia
LBD causes changes in thinking abilities. These changes may include:
- Visual hallucinations, or seeing things that are not present. Visual hallucinations occur in up to 80 percent of people with LBD, often early on. Nonvisual hallucinations, such as hearing or smelling things that are not present, are less common than visual ones but may also occur.
- Unpredictable changes in concentration, attention, alertness, and wakefulness from day to day and sometimes throughout the day. Ideas may be disorganized, unclear, or illogical. These kinds of changes are common in LBD and may help distinguish it from Alzheimer’s disease.
- Severe loss of thinking abilities that interfere with daily activities. Unlike in Alzheimer’s dementia, memory problems may not be evident at first but often arise as LBD progresses. Other changes related to thinking may include poor judgment, confusion about time and place, and difficulty with language and numbers.
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Common Symptoms Of Lewy Body Dementia
The disease of Lewy Body Dementia affects cognitive response, changes physical and sleep pattern along with changing behavioral features. Some people may start developing the disorder in movement in the initial stage that further leads to dementia. This is often termed as Parkinsons disease dementia.
Another group of people may start developing cognitive disorder with two or more distinctive features of dementia. There are very few people that come up with neuropsychiatric symptoms. These include hallucinations, behavioral problems, and complex mental activities.
Generic symptoms of Lewy Body Dementia include:
- Impaired thinking like loss of execution, planning, processing and/or ability to understand visual information
- Fluctuation in alertness, attention, and cognition
- Sudden tremors, stiffness, and difficulty in walking
- Changes in bodily functions like blood pressure, temperature regulation bowel and bladder function.
What Are Pd Dementia Safety Concerns
Safety issues should be considered and monitored from the time of diagnosis. As PDD progresses, ensure that your loved one is not left alone.
- Evaluate driving privileges before safety is a concern. Your doctor can make a driving evaluation referral.
- Work out legal and financial issues and safeguard finances. People with dementia are at greater risk of falling victim to scams and fraud.
- Minimize prescription risks. Confirm with the doctor the medication names and doses of the person with PD. If the person is in dementias early stages and capable, fill up their weekly pill box together and monitor use.
- Medical alert systems can be critical in case your loved one falls or wanders outside of the home. Many types of systems are available, from bracelets and pendants to smart watches with fall detection and one-button connections to 911.
- Evaluate gun safety. If your loved one owns a firearm or has one in the home, consider speaking with their doctor about the subject and taking appropriate safety precautions.
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Behavioral And Mood Symptoms Of Lewy Body Dementia
Changes in behavior and mood are possible in LBD and may worsen as the persons thinking abilities decline. These changes may include:
- Apathy, or a lack of interest in normal daily activities or events and less social interaction
- Anxiety and related behaviors, such as asking the same questions over and over or being angry or fearful when a loved one is not present
- Agitation, or restlessness, and related behaviors, such as pacing, hand wringing, an inability to get settled, constant repeating of words or phrases, or irritability
- Delusions, or strongly held false beliefs or opinions not based on evidence. For example, a person may think his or her spouse is having an affair or that relatives long dead are still living.
- Paranoia, or an extreme, irrational distrust of others, such as suspicion that people are taking or hiding things
Lifespan In Parkinson’s Nearly Identical To General Population
A new study finds that, overall, lifespan for those living with Parkinsons disease is nearly identical to those in the general population. The study looked at a group of diseases called synucleinopathies, including Parkinsons. The results appear in the May 15 online edition of JAMA Neurology.
Lewy bodies clumps of alpha-synuclein protein that accumulate in certain brain cells are the hallmark of PD. The clumps also occur in less common diseases such as multiple system atrophy , dementia with Lewy bodies , and PD dementia in which symptoms can be similar to those of typical Parkinsons.
Researchers led by Rodolfo Savica, M.D., Ph.D., at the Mayo Clinic in Rochester, MN, compared lifespan and cause of death among people with synucleinopathies compared to the general population. They examined the medical records of all 461 people diagnosed with synucleinopathies in Olmsted County, MN, between 1991 and 2010. The scientists also analyzed records from individuals closely matched for age and sex who did not have these diagnoses.
What Does It Mean?
Overall, the study reminds us that people with Parkinsons can live many years with the disease. With that in mind, people living with these diseases, their care partners and their families can take steps to plan for their health care and make important financial decisions.
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Treatments For Parkinsons Disease Dementia And Dementia With Lewy Bodies
Treatments for DLB are similar to PDD and are aimed at symptom control. The motor symptoms of slowness, stiffness and walking difficulties can be treated with Levodopa. However, Levodopa can cause or exacerbate hallucinations, making it difficult to use it as a treatment for patients who have or are at risk of having hallucinations. Sometimes, clinicians will need to treat the hallucinations more aggressively in order for a patient to tolerate Levodopa given to help the motor symptoms. On the flipside, anti-psychotic medications to control hallucinations can worsen motor symptoms, so treating all the symptoms of LBD simultaneously can be a tricky balancing act.
Lewy Body Dementia Symptoms
Symptoms of LBD can fluctuate but usually become progressively worse over time. Early in the disease, fluctuations between normal and abnormal behavior, mood, and cognitive ability can occur. The central feature of this disease is progressive dementia shown by deficits in attention and minor dysfunctions in the early stages that can progress to severe dementia.
In severe dementia, the person’s inability to carry out normal daily functions, loss of recognition of family members, and other severe cognitive, behavior and mood problems can render the individual virtually helpless. Other features include fluctuating cognition, visual hallucinations, and spontaneous features of Parkinsonism such as body stiffness, tremors, shuffling gait, emotionless facial features and/or decreased coordination.
As mentioned previously, the diagnosis is made on the basis of symptoms and their time of occurrence in patients. However, most doctors that make the diagnosis also typically use other tests primarily to rule out other causes for the symptoms.
There are no sensitive or specific blood or urine tests that diagnose LBD. However, routine laboratory tests such as a basic metabolic panel, CBC, thyroid studies, vitamin B12 levels and tests for syphilis, Lyme disease, or HIV also may be ordered. MRI, CT scans, and other studies of the brain are used to help distinguish LBD from other problems that have similar symptoms.
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