How Is Dementia With Lewy Bodies Diagnosed
There is more than one way to assess whether a person may have dementia, and the process can vary.
During an assessment, the doctor will talk to the person and someone who knows them well. They will ask about:
- the persons medical history
- when their symptoms started
- how well they have been able to get on with daily life.
Tests For Dementia With Lewy Bodies
There’s no single test for dementia with Lewy bodies.
The following may be needed to make a diagnosis:
- an assessment of symptoms for example, whether there are typical symptoms of dementia with Lewy bodies
- an assessment of mental abilities this will usually involve a number of tasks and questions
- blood tests to rule out conditions with similar symptoms
- brain scans, such as an MRI scan, CT scan or a SPECT scan these can detect signs of dementia or other problems with the brain
Preparing For An Appointment
You’ll probably first discuss your symptoms with your family doctor, who may refer you to a doctor trained in dementia â usually a doctor trained in brain and nervous system conditions or mental health conditions .
Because appointments can be brief, and because there’s often a lot to talk about, be prepared for your appointment. You may also want to bring along a family member. Here’s some information to help you get ready for your appointment, and what to expect from your doctor.
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Is There Treatment Available
At present there is no cure for Lewy body disease. Symptoms such as depression and disturbing hallucinations can usually be reduced by medication. However, medications to relieve hallucinations may increase muscle tremors and stiffness. Conversely, anti-Parkinson drugs may make hallucinations worse.
Emerging evidence suggests that cholinesterase inhibitor drugs may be quite helpful for some people with this condition.
People with this form of dementia are very sensitive to the side effects of neuroleptic drugs such as antipsychotic medications. It is essential all medications are supervised by a specialist to avoid these severe side effects.
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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What You Can Do
Plan ahead and write lists of important information, including:
- Write a detailed description of all your symptoms.
- Make a list of all medications, vitamins or supplements that you’re taking.
- Write down questions to ask your doctor, such as what tests or treatments he or she may recommend.
- Take a family member or friend along. A family member or close friend may tell your doctor about symptoms you may not have noticed.
Test Results Supporting Diagnosis
Physical and neurological examinations and various tests may help distinguish LBD from other illnesses. Specific tests that may support an LBD diagnosis include:
- A positron emission tomography scan or a single-photon emission computerized tomography scan showing reduced dopamine transporter uptake in the basal ganglia
- Abnormal 123iodine-MIBG myocardial scintigraphy showing reduced communication of cardiac nerves
- Sleep study confirming REM sleep behavior disorder without loss of muscle tone
Read more about diagnosing dementia, including tests and who can make a diagnosis.
There are no tests that can definitively diagnose LBD. Currently, only a brain autopsy after death can confirm a suspected diagnosis. However, researchers are studying ways to diagnose LBD earlier and more accurately during life. The use of certain imaging, blood, cerebrospinal fluid, and genetics tests is being studied.
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Treatments For Dementia With Lewy Bodies
There’s currently no cure for dementia with Lewy bodies or any treatment that will slow it down.
But there are treatments that can help control some of the symptoms, possibly for several years.
Treatments include:
- medicines to reduce hallucinations, confusion, drowsiness, movement problems and disturbed sleep
- therapies such as physiotherapy, occupational therapy and speech and language therapy for problems with movement, everyday tasks, and communication
- psychological therapies, such as cognitive stimulation
- dementia activities, such as memory cafes
Stage Seven: Very Severe Cognitive Decline
Stage seven typically lasts for 1.5 to 2.5 years and is characterized by very severe cognitive decline. Patients in stage seven lose their ability to communicate, and are often unable to walk. Individuals in late stage dementia require extensive assistance with lifes activities, and often need round the clock support.
Dementia affects approximately 5 million Americans each year. Lewy Body Dementia comprises approximately 1.4 million cases within this figure, and is often misdiagnosed. If youd like to learn more about Lewy Body Dementia or seek support, please visit us online at lewybodyresourcecenter.org or reach out to our helpline at .
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Outlook For Dementia With Lewy Bodies
How quickly dementia with Lewy bodies gets worse varies from person to person.
Home-based help will usually be needed, and some people will eventually need care in a nursing home.
The average survival time after diagnosis is similar to that of Alzheimer’s disease around 6 to 12 years. But this is highly variable and some people live much longer than this.
If you or a loved one has been diagnosed with dementia, remember that you’re not alone. The NHS and social services, as well as voluntary organisations, can provide advice and support for you and your family.
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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Who Should Take The Syntap Test For Lbd
This test benefits people who show:
Hallucinations Or Delusions Of Reality
Unlike Alzheimers disease, individuals in the early stages of Lewy Body Dementia may exhibit cognitive changes such as hallucinations or distortions of reality. In general, hallucinations caused by LBD are vivid and usually visual, rather than auditory. LBD differs from other forms of dementia in that most early-stage cases do not involve memory loss.
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Assessing Your Mental Abilities
The Mini Mental State Examination is widely used to help test mental ability.
The MMSE can be used to assess a number of different mental abilities, including:
- short- and long-term memory
- ability to plan
- ability to understand instructions
The MMSE involves a series of tasks, which together carry a maximum score of 30 points. Example tasks include:
- memorising a short list of objects and then repeating the list back
- correctly identifying the day of the week, the date, or the year
The MMSE is not a test to diagnose dementia, but it’s useful for assessing the level of mental impairment a person with dementia may have.
What Complications Are Associated With Medications Used To Treat Lewy Body Dementia
Up to 50% of people living with Lewy body dementia can have severe side effects when treated with certain antipsychotic medications. These are known as the typical or traditional antipsychotics and include such drugs as thoridazine, haloperidol, chlorpromazine and perphenazine. This class of older, first-generation antipsychotics can cause sedation and make cognitive symptoms and movement problems worse. A life-threatening reaction to an antipsychotic medication, called neuroleptic malignant syndrome, is possible. Symptoms include rigid muscles, changing blood pressure, high fever, confusion and fast heart rate. Contact your healthcare provider immediately if you or your loved are taking an antipsychotic and develop these symptoms.
Visual hallucinations and behavioral changes may be treated with the newer, atypical antipsychotic medications pimavanserin , quetiapine or clozapine . However, because all antipsychotic medications both older, typical medications and newer atypical medications can increase the risk of death in elderly patients with dementia, you and your healthcare provider should carefully discuss the risks and benefits and using these medications.
Other medications, like antidepressants or sedative antihistamines, may increase confusion in people with LBD.
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Treatment And Care For Lewy Body Dementia
While LBD currently cannot be prevented or cured, some symptoms may respond to treatment for a period of time. An LBD treatment plan may involve medications, physical and other types of therapy, and counseling. A plan to make any home safety updates and identify any equipment can make everyday tasks easier.
A skilled care team often can suggest ways to improve quality of life for both people with LBD and their caregivers.
Lifestyle And Home Remedies
Symptoms and progression are different for everyone with Lewy body dementia. Caregivers may need to adapt the following tips to individual situations:
- Speak clearly and simply. Maintain eye contact and speak slowly, in simple sentences, and don’t rush the response. Present only one idea or instruction at a time. Use gestures and cues, such as pointing to objects.
- Encourage exercise. Benefits of exercise include improvements in physical function, behavior and depression symptoms. Some research shows exercise may slow cognitive decline in people with dementia.
- Provide mind stimulation. Participating in games, crossword puzzles and other activities that involve using thinking skills may help slow mental decline in people with dementia.
- Establish a nighttime ritual. Behavior issues may worsen at night. Create calming bedtime rituals without the distraction of television, meal cleanup and active family members. Leave night lights on to prevent disorientation.
Limiting caffeine during the day, discouraging daytime napping and offering opportunities for daytime exercise may help prevent nighttime restlessness.
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What Are The Causes Of Lewy Body Dementia
The precise cause of LBD is unknown, but scientists are learning more about its biology and genetics. For example, we know that an accumulation of Lewy bodies is associated with a loss of certain neurons in the brain that produce two important chemicals that act as messengers between brain cells . One of these messengers, acetylcholine, is important for memory and learning. The other, dopamine, plays an important role in behavior, cognition, movement, motivation, sleep, and mood.
Scientists are also learning about risk factors for LBD. A risk factor is something that may increase the chance of developing a disease. Some risk factors can be controlled while others cannot. Age is considered the greatest risk factor. No specific lifestyle factor has been proven to increase one’s risk for LBD.
Other known risk factors for LBD include certain diseases and health conditions, particularly Parkinson’s disease and REM sleep behavior disorder, which have been linked to a higher risk of LBD.
Having a family member with LBD also may increase a person’s risk, though LBD is not considered a genetic disease. Variants in three genes APOE, SNCA, and GBA have been associated with an increased risk, but in most cases, the cause is unknown.
What Causes Dementia With Lewy Bodies
Dementia with Lewy bodies is caused by deposits of an abnormal protein called Lewy bodies inside brain cells. These deposits, which are also found in people with Parkinsons disease, build up in areas of the brain responsible for things such as memory and muscle movement.
It’s not clear why the deposits develop and how exactly they damage the brain, but it’s thought they disrupt the brain’s normal functions by interfering with chemical signals transmitted from one brain cell to another.
Dementia with Lewy bodies usually occurs in people with no family history of the condition, although there have been reports of rare cases that seem to run in families.
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How Can A Person Diagnosed With Lewy Body Dementia Live The Best Life Possible
First, its important to interact with others as much as possible. Plus exercise and eat a healthy diet to keep mind and body as strong as possible.
Use music and aromatherapy to reduce anxiety and improve mood.
Other things you can do involve seeking the help and assistance of others. Therapists can improve the quality of life of someone living with Lewy body dementia. Therapists include:
- Physical therapists: These therapists can help improve physical strength, flexibility, balance and walking mechanics.
- Occupational therapists: These therapists can teach skills and methods to maintain your ability to perform activities of everyday life and remain independent.
- Speech therapists: These therapists can improve swallowing difficulties and ability to speak more clearly.
Persons with Lewy body dementia and their families can also benefit from counseling with a psychotherapist. This counselor teaches how to manage emotional and behavioral problems. Finally, joining a support group there are support groups for persons with LBD and for the caregivers of persons with LBD. Support groups help solve day-to-day problems and frustrations through sharing similar experiences. See the resource section of this article for links to support groups.
Types Of Lewy Body Dementia
It’s important to know which type of LBD a person has, both to tailor treatment to particular symptoms and to understand how the disease will likely progress. Clinicians and researchers use the “one-year rule” to help make a diagnosis. If cognitive symptoms appear at the same time as or at least a year before movement problems, the diagnosis is dementia with Lewy bodies. If cognitive problems develop more than a year after the onset of movement problems, the diagnosis is Parkinson’s disease dementia.
Regardless of the initial symptoms, over time, people with either type of LBD often develop similar symptoms, due to the presence of Lewy bodies in the brain. But there are some differences. For example, dementia with Lewy bodies may progress more quickly than Parkinson’s disease dementia.
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What Happens After Referral
Once your GP has referred you to a specialist, you may be required to attend an appointment at a specialist clinic. When you attend the clinic you can expect someone to ask about your symptoms, your medical history and your background. Various tests are carried out and usually a family member is asked to discuss any changes they have noticed in you. They may be asked to complete an assessment form to help clinic staff understand the problems clearly. Sometimes this is done during one long clinic session and sometimes it is split over two visits. Normally you will have a short physical examination. A nurse may also be in attendance. This is the nurse who is likely to see you once any diagnosis has been made.
The Seven Stages Of Lewy Body Dementia
I am excited to have found a new LBD resource. Unfortunately my finding led to another finding that I am probably a Stage 4 Lewy patient on a 7-part scale.
My new resource is Norma Loeb, and she runs the Lewy Body Dementia Resource Center.
She contacted me recently after hearing the K-Pod podcast where I was interviewed by Kerri Kasem, daughter of Top-40 radio personality Casey Kasem who they believe died of LBD.
So glad she contacted me because the first thing I noticed going to her website was a post listing the seven stages of Lewy body. I have heard people talk of different stages. but I dont believe I knew there were seven and I havent seen anything breaking that down in simple language like this.
I would classify myself in Stage 3 at best, but most probably Stage 4 based on this scale. Yikes. Although I believe I was diagnosed early. It has been nearly three years and it appears I am moving up the scale rather quickly. Makes it a little more serious when I put it like that.
I need to stretch my stages out a little longer, I think.
Without further ado, here is Norma Loebs post:
Dementia is a disease that affects millions of Americans. There are several types of dementia that we know of, including Alzheimers Disease and Lewy Body Dementia.
While forms of dementia vary in symptoms and severity, the Global Deterioration Scale aids in identifying the typical progression.
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