What Is Lewy Body Disease
Lewy body disease is caused by the degeneration and death of nerve cells in the brain. The name comes from the presence of abnormal spherical structures, called Lewy bodies, which develop inside nerve cells. It is thought that these may contribute to the death of the brain cells. They are named after the doctor who first wrote about them. It is sometimes referred to as Diffuse Lewy body disease.
Lewy Body Dementia Signs And Symptoms
Symptoms of Lewy body dementia include a progressive cognitive decline that interferes with daily activities, unpredictable changes in attention and alertness, visual hallucinations, and motor symptoms similar to those of Parkinsons disease such as slow movements, rigidity, difficulty walking, tremors or shaking, balance issues, and a loss of coordination. The disease affects thinking, behavior, movement, and mood. People with LBD may also experience depression, anxiety, and sleep disorders.
Early signs of LBD may start mild and progress to become more severe. Due to the severity and progression of symptoms, LBD ultimately leads to a loss of independence, requiring individuals with the disease to receive increasing levels of personal assistance and caregiving over time.
Prognosis And Nursing Home Placement
Patients and families expect clear and concise information about dementia prognosis and are often disappointed with the divergent responses from clinicians. Prognosis is difficult from the clinician perspective because of the significant variability among patients and the multitude of contributing factors to health outcomes. Additionally, there is conflicting information about LBD progression, with an average duration of 5 to 7 years and range of 2 to 20 years . Patients and caregivers are sometimes relieved to be given a diagnosis other than AD, due to lack of knowledge about other degenerative dementias and a sometimes false perception that anything else is preferable. Because LBD is often misdiagnosed or underdiagnosed, there may be a different sense of relief with diagnosis to finally receive an answer that explains the constellation of symptoms.
Other comparison studies evaluating survival differences in patients with AD and DLB have found that when comparing the groups based on Mini-Mental State Examination score, the survival time is shorter in DLB . The evidence suggests that DLB patients may have worse mortality outcomes however, the rate of cognitive decline over time is similar between DLB and AD patients . There is no difference in mortality rates or time to nursing home placement between patients with pure forms of DLB compared to mixed pathology with both DLB and AD .
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Risk Factors For Lewy Body Dementia
There are only a few risk factors associated with Lewy body dementia including:
- Age people over the age of 60 are at higher risk of developing Lewy body dementia.
- Gender men are more likely to develop Lewy body dementia.
- Family history if you have a family history of Lewy body dementia, you are more likely to develop the condition as well.
- Depression early research studies show a link between depression and Lewy body dementia
How Exactly Is Lewy Body Dementia Related To Alzheimers Disease And Parkinsons Disease
Lewy body dementia is a broad, general term for dementia in which lewy bodies are present in the brain. Dementia with lewy bodies and Parkinsons disease dementia are two related clinical disorders that make up the general broader category of Lewy body dementia. Sometimes LBD is first diagnosed as Parkinsons disease or Alzheimers disease based on its symptoms.
- Parkinsons disease dementia : You might be diagnosed with Parkinsons disease if you start out with a movement disorder typical to Parkinsons but then have your diagnosis changed to PDD when dementia symptoms develop.
- Alzheimers disease : You might start out with memory or cognitive disorder that leads to a diagnosis of AD. Over time, other distinctive symptoms begin to appear and your diagnosis is then changed to dementia with lewy bodies. Distinctive symptoms of LBD include the changes in attention, alertness and cognitive ability changes in walking and movement visual hallucinations REM sleep behavior disorder and severe sensitivity to some antipsychotics used to treat hallucinations.
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Lewy Body Dementia Canada
Learn to live best with LBD
Im no fan of applying the concept of stages or phases to predict the trajectory of a person with Lewy Body Dementia . Ive witnessed far, far too much variation. Precipitous drops. Miraculous recoveries. Dizzying variations. I consider it a continuum. And not a linear one.
So I never apply stages, phases or expectations. The only one I knew for certain, was the very end. The rest was a wild ride indeed.
Lewy Body Dementia life expectancy is impossible to predict.
But theres a constant desire by people desperate for answers, for a clue to where theyre going, whats next, how to plan or just get by. And for that reason, I present the best one Ive found.
I defer to the exceptional work of an exceptionally resourceful and committed duo, Sue Lewis and June Christensen, who exhaustively compiled the document based on input from approximately 300 members of an online group called Lewy Body Caring Spouses in 2006.
In my view, this is the best description of a possible sequence, categorized into five groupings of symptoms, which will always have a great deal of overlap.
Keep in mind these categories and their contents are potential. Personally, I shy away from the phrase stage and use something like earlier or later in the sequence of symptoms, which can fluctuate shockingly. This is a subtle, but important difference to me.
Who Gets Dementia With Lewy Bodies
Around 5% of people with a diagnosis of dementia are recorded as having DLB, but there is good evidence that the condition is under-diagnosed. Scientists think DLB may account for up to 20% of all dementia.
Dementia with Lewy bodies affects men and women roughly equally. As with most other types of dementia, DLB becomes increasingly common over the age of 65. It can also affect people younger than this.
There is not much evidence that anything we might be exposed to during our lives increases the risk of DLB. Having a traumatic head injury may increase the risk of developing Parkinsons disease later in life, but its not known whether this also applies to DLB.
Almost all people who develop DLB have a sporadic form, which means that the main cause is unknown. Some genes may increase the risk of developing DLB.
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Parkinsons Disease With Dementia Versus Dementia With Lewy Bodies
Some patients with Parkinsons disease experience no or only subtle cognitive decline, and their primary limitation is their motor disorder. However, other patients with Parkinsons disease develop dementia as a consequence of the disease. When dementia develops after an established motor disorder, we call the disease Parkinsons disease with dementia . In contrast, when dementia develops prior to or at the same time as the motor disorder, we call the disease DLB. Although the initial sequence of symptoms differs in PDD and DLB, as the disorders progress, the symptoms and the underlying brain changes are much more similar than they are different. As such, many researchers and clinicians think of PDD and DLB as being on a continuum of a similar disease process rather than as two distinct entities.
How Is Lewy Body Disease Diagnosed
This type of dementia is diagnosed by taking a careful history of the pattern of symptoms, and by excluding other possible causes such as Vascular dementia and Alzheimer’s disease. A brain scan may reveal brain degeneration, but the Lewy bodies can only be identified by examination of brain tissue after death.
Lewy body disease is similar to Alzheimer’s disease in many ways, and in the past it has sometimes been difficult to distinguish the two. It has only recently been accepted as a disease in its own right. It can occur by itself or together with Alzheimer’s disease and/or Vascular dementia. It may be hard to distinguish Lewy body disease from Parkinson’s disease, and some people with Parkinson’s disease develop a dementia which is similar to that seen in Lewy body disease.
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Are There Medicines To Treat Dlb
Though there is no cure for DLB yet, there are medications that help manage the symptoms. These medications are called cholinesterase inhibitors, and they can help if a person with DLB is having memory problems. Some examples of these medicines are donepezil, rivastigmine and galantamine. If a person with DLB has movement symptoms they may be treated with medications used for Parkinsons disease, such as levodopa. Sleep problems may be managed by sleep medications including melatonin.
Because people with DLB are usually very sensitive to medications, any new medication, even one that is not being used for the brain, needs to be reviewed with the persons provider to avoid potential contraindication.
What Causes Dementia With Lewy Bodies
It is not yet known why Lewy bodies develop in the brain or exactly how they cause dementia. But we do know that Lewy body disease:
- can cause different symptoms depending on what parts of the brain have the biggest build-up of faulty proteins
- reduces the levels of important chemicals needed to send messages around the brain
- breaks the connections between nerve cells, eventually causing these cells to stop working
- usually develops over a period of many years typically when a person is approaching old age. Lewy bodies can be developing in the brain for a long time before any symptoms show.
Having Lewy body disease doesnt mean that a persons dementia is only caused by the build-up of Lewy bodies in their brain.
Many people with DLB also have a build-up of other proteins that cause Alzheimers disease. This is common in people over about 80 years old. For people with both DLB and Alzheimers, dementia symptoms are often more severe and progress more quickly.
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Slowing The Progression Of Symptoms
The same healthy lifestyle changes that are used to prevent dementia can also be useful in slowing the advancement of LBD symptoms.
To learn more about putting these strategies into action, see Preventing Alzheimers Disease.
Is Lewy Body Dementia An Inherited Condition
One of the more recent discoveries toward identifying a cause of Lewy body dementia is the finding of an increasing number of gene mutations. Two genetic risk factors recently discovered are variants in the APOE and GBA genes. APOE is already known to increase the risk of developing Alzheimers disease. There is growing evidence that it also increases the risk for dementia with lewy bodies. Similarly, the GBA gene increases the risk for both Parkinsons disease and dementia with lewy bodies. Despite these findings, genetic changes as a cause of LBD are still considered rare by scientists. Most cases of Lewy body dementia are not thought to be inherited.
Genetic testing for routine screening for LBD is not currently recommended. Discuss the pros and cons of testing with your healthcare providers if you have a family history of multiple members with Parkinsons disease and/or dementia with lewy bodies.
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Care For The Caregiver
Its easy to get lost in caregiving to the detriment of your own health and well-being. But you cant do your best for someone else if you dont take care of yourself.
Try to follow these self-care tips:
- Ask for help. Enlist family, friends, neighbors, or in-home healthcare providers.
- Take time off to do something for yourself. Socialize with your friends, schedule a massage, or plop on the sofa and stream a movie. Me time matters.
- Get regular exercise, even if its just a walk around the neighborhood.
- Maintain a healthy diet so your own health doesnt get derailed.
- Take a periodic time out for deep breathing and quiet meditation or soothing music.
- See your own doctor when you start to feel out of whack.
Caregiver burnout is all too real. It doesnt mean youve failed, it only means youre stretching yourself too thin. You might find it helpful to join a caregiver support group so you can interact with people who get it. If you start to feel emotionally or physically drained, consider speaking to a therapist.
Last medically reviewed on May 18, 2017
Types Of Lewy Body Dementia And Diagnosis
LBD refers to either of two related diagnoses dementia with Lewy bodies and Parkinson’s disease dementia. Both diagnoses have the same underlying changes in the brain and, over time, people with either diagnosis develop similar symptoms. The difference lies largely in the timing of cognitive and movement symptoms.
In DLB, cognitive symptoms develop within a year of movement symptoms. People with DLB have a decline in thinking ability that may look somewhat like Alzheimer’s disease. But over time, they also develop movement and other distinctive symptoms of LBD.
In Parkinson’s disease dementia, cognitive symptoms develop more than a year after the onset of movement symptoms . Parkinson’s disease dementia starts as a movement disorder, with symptoms such as slowed movement, muscle stiffness, tremor, and a shuffling walk. These symptoms are consistent with a diagnosis of Parkinson’s disease. Later on, cognitive symptoms of dementia and changes in mood and behavior may arise.
Not all people with Parkinson’s disease develop dementia, and it is difficult to predict who will. Many older people with Parkinson’s develop some degree of dementia.
Caregivers may be reluctant to talk about a person’s symptoms when that person is present. Ask to speak with the doctor privately if necessary. The more information a doctor has, the more accurate a diagnosis can be.
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How To Help Someone Manage Lewy Body Dementia
When it comes to helping someone manage the symptoms of LBD, small things can often make a big difference.
Create a routine. It can help someone with LBD to have predictable routines, especially around meal times and sleep times.
Establish a nighttime ritual. Try to establish bedtime rituals that are calming and away from the noise of television, meal cleanup, and active family members. Limiting caffeine consumption and daytime napping, and encouraging exercise can help curb restlessness at night.
Modify tasks. Break tasks into easier steps and focus on success, not failure.
Walk together. Taking a walk with the patient with LBD is a win-win activity. Being outdoors and exercising is vital for the health and state of mind for both the patient and you.
Strengthen senses. Have a doctor evaluate each the patients five senses in order to identify and treat any abnormalities. Then ask about exercises to improve them.
Make lifestyle changes. To help minimize the risk of fall-related injuries, you can help stabilize blood pressure. Help your loved one stay well hydrated, exercise, take in adequate sodium , avoid prolonged bed rest, and stand up slowly.
Tips for managing behavioral changes
One of the major challenges of caring for a loved one with dementia can be coping with the troubling behavioral changes that often occur. As a caregiver, you cant change the person with dementia, but you can employ strategies to modify or better accommodate any problem behaviors.
What Are The Symptoms Of Lewy Body Dementia
Lewy body dementia symptoms may resemble those of other neurological disorders, like Alzheimers disease and Parkinsons disease. LBD affects each person differently, and symptoms vary in severity.
Common symptoms of LBD include:
- Visual hallucinations, or seeing things that are not there.
- Reduced alertness, attention and ability to concentrate.
- Parkinsonism, a movement disorder with symptoms including slowness, tremors, stiffness, balance problems, soft voice, difficulty swallowing, reduced facial expression and shuffling walk.
- Visuospatial difficulties, including decreased depth perception, trouble recognizing familiar objects and impaired hand-eye coordination.
- Delusions, or beliefs with no basis in reality.
- Changes in behavior and mood including anxiety, agitation, aggression, apathy, depression and paranoia.
- Changes in sleep patterns.
Other symptoms include:
- Acting out while sleeping. Your loved one may act out their dreams during a phase of sleep cycle called rapid eye movement . Sometimes this happens years before their LBD diagnosis. Often called REM sleep behavior disorder , this condition is described as frequent movements, such as flailing or punching, with yelling or speaking while sleeping. People living with RBD often have difficulty separating dreams from reality when they wake up.
- Changes in normal body functions. Body temperature may waver, blood pressure may fluctuate and loss of bowel and bladder control.
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The Link To Parkinsons Disease
Most people with Parkinsons disease have Lewy bodies in their brains. Its these clusters that cause some or all of the motor symptoms of Parkinsons disease, as well as memory or cognitive problems, visual hallucinations, and problems with alertness.
We rarely know if a living patient has Lewy bodies with certainty, however. Its not until an autopsy that they can be seen, says Liana Rosenthal, M.D., assistant professor of neurology at the Johns Hopkins University School of Medicine. If we see Lewy bodies in someones brain during an autopsy, thats considered a pathologic certainty of Parkinsons disease, she says.
As with Parkinsons, Lewy body dementia is associated with a depletion of certain neurotransmitters in the brain. These are:
- Dopamine: This neurotransmitter helps transmit signals that control muscle movement. When the accumulation of Lewy bodies blocks dopamines production and transmission, the result is the hallmark movement issues of Parkinsons disease.
- Acetylcholine: This neurotransmitter does its work in the parts of the brain responsible for memory, thinking and processing. When Lewy bodies build up in these areas, they interfere with acetylcholine, causing symptoms of dementia.