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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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.
What Is Lewy Body Dementia Causes Symptoms And Treatments
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Lewy body dementia is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. Lewy body dementia is one of the most common causes of dementia.
LBD affects more than 1 million individuals in the United States. People typically show symptoms at age 50 or older, although sometimes younger people have LBD. LBD appears to affect slightly more men than women.
Diagnosing LBD can be challenging. Early LBD symptoms are often confused with similar symptoms found in other brain diseases or in psychiatric disorders. Lewy body dementia can occur alone or along with other brain disorders.
It is a progressive disease, meaning symptoms start slowly and worsen over time. The disease lasts an average of five to eight years from the time of diagnosis to death, but can range from two to 20 years for some people. How quickly symptoms develop and change varies greatly from person to person, depending on overall health, age, and severity of symptoms.
In the early stages of LBD, symptoms can be mild, and people can function fairly normally. As the disease advances, people with LBD require more help due to a decline in thinking and movement abilities. In the later stages of the disease, they often depend entirely on others for assistance and care.
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Are You Aware Of Some Of The Less Common Symptoms Of Lewy Body Dementia
Learn about lewy body dementia and parkinsons disease here. Read on to learn more about dementia causes and sympto. Trusted health information from the national institutes of health there are two types of lewy body dementia : Are you aware of some of the less common symptoms of lewy body dementia? Do you know a friend or family member who is experiencing a decline in their mental abilities? Lewy body dementia causes thinking, movement, and mood issues and is a common form of dementia. Home brain & nervous system centertopic guide what is lewy body. Trusted health information from the national institutes of health lewy body dementia is one of the most common types of dementiabut also. The johns hopkins team of lbd specialists offers unique expertise backed by years of research to help you manage this condition. Learn how dementia with lewy bodies and parkinsons disease dementia are alike and different from each other. Parkinsons disease can result in problems with memory and th. See how lewy body dementia affects our brains and causes symptoms. Featured conditions lewy body dementia, also known as dementia with lewy bodies, is the second most common type of progressive dementia after alzheimers disease.
Clinical History And Testing
Diagnostic tests can be used to establish some features of the condition and distinguish them from symptoms of other conditions. Diagnosis may include taking the person’s medical history, a physical exam, assessment of neurological function, testing to rule out conditions that may cause similar symptoms, brain imaging, neuropsychological testing to assess cognitive function,sleep studies, or myocardial scintigraphy. Laboratory testing can rule out other conditions that can cause similar symptoms, such as abnormal thyroid function, syphilis, HIV, or vitamin deficiencies that may cause symptoms similar to dementia.
Dementia screening tests are the Mini-Mental State Examination and the Montreal Cognitive Assessment. For tests of attention, digit span, serial sevens, and spatial span can be used for simple screening, and the Revised Digit Symbol Subtest of the Wechsler Adult Intelligence Scale may show defects in attention that are characteristic of DLB. The Frontal Assessment Battery, Stroop test and Wisconsin Card Sorting Test are used for evaluation of executive function, and there are many other screening instruments available.
If DLB is suspected when parkinsonism and dementia are the only presenting features, PET or SPECT imaging may show reduced dopamine transporter activity. A DLB diagnosis may be warranted if other conditions with reduced dopamine transporter uptake can be ruled out.
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Problems With Mental Abilities
Problems with attention and alertness are very common in DLB. An important feature of the condition is that these problems may switch between being bad and then better – or the other way round – over the course of the day, by the hour or even a few minutes. Someone with DLB may stare into space for a long time or have periods when their speech is disorganised.
People may also have difficulties judging distances and seeing objects in three dimensions. It is common to struggle with planning, organising and decision-making. Some people also experience depression. Day-to-day memory is often affected in people with DLB, but usually less in the early stages than in early Alzheimer’s disease.
How To Get Extra Help And Support
Apply for a needs assessment from the adult social services department of your local council. This will help to identify where you might benefit from help, such as with meals or housework.
A needs assessment should be done face to face. Its a good idea to have a relative or friend with you, if youre not sure what your needs might be. They can also take notes for you.
Read more about applying for a needs assessment
Find out about dementia-specific services near you from Alzheimers Society online directory Dementia Connect. Age UK provide a range of services and local support.
Join an online forum, such as Alzheimers Society Talking Point. Online forums are a good way to share your experiences of living with dementia and advice on how to continue living independently.
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How Long Does It Take For Dementia To Progress
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On average, individuals with vascular dementia typically live about 5 years after their symptoms begin. Those with Dementia with Lewy bodies typically live 6-12 years after their symptoms first develop, and those with frontotemporal dementia live an average of 6-8 years after symptoms first manifest.
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Contents
What Type Of Care Does A Person With Dementia With Lewy Bodies Need
It is quite common for people who have these dementia symptoms to need more routine and round-the-clock care by the time they enter the mid-stages of this condition. Dementia care, including memory care living arrangements, may offer some of the best support to minimize the condition.
Most people will need to have support to help them manage hallucinations in a safe manner as well as a modified environment that can help to reduce distractions and allow for more focus. A routine can be helpful for most people, along with support that helps with daily tasks such as dressing, bathing and managing medications.
Because of the complications of this form of dementia, many people will need medical support over time. This may include monitoring their behavior and safety, but it may also require help tending to small abrasions that happen during falls or episodes of confusion.
For more information on memory impairments and support for dementia with Lewy Bodies, contact our staff. We have extensive experience working with various forms of dementia and enabling individuals to manage their disease in the most positive way possible.
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Why Is It Difficult To Diagnose Lewy Body Dementia
Lewy body dementias similarities to Alzheimers and Parkinsons pose a challenge for doctors.
Because early symptoms of DLB are similar to Alzheimers, and Parkinsons disease dementia akin to Parkinsons, individuals often get diagnosed with the more common disorder as opposed to LBD.
It can take quite some time to get the correct diagnosis and it is not unusual, unfortunately, for it to take 1 to 3 years, Loeb said.
Loeb points out that it is key for family members of patients to keep track of all symptoms, as even unexpected symptoms are often linked to LBD. In the case of Robin Williams, Schneider Williams pointed out that a sudden ad prolonged spike in fear and anxiety can be an early indication of LBD.
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What Is Dementia With Lewy Body Disease
Dementia with Lewy body disease is a condition that causes changes in thinking, behavior, and movement. DLB usually starts with thinking and behavior changes that are followed by problems with movement. The movement problems in DLB are similar to those seen in people with more classical Parkinsons disease.
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Dementia With Lewy Bodies And Neuroleptics
Neuroleptics, or antipsychotics, are strong tranquillizers sometimes prescribed for people with dementia to treat hallucinations or other behavior problems. However, if taken by people with LBD, neuroleptics may be particularly dangerous. This class of drugs can induce Parkinson-like side-effects, including rigidity, immobility, and an inability to perform tasks or to communicate.
If you or your loved one with Lewy body dementia is not unduly distressed by the hallucinations, it may be better to tolerate them rather than endure the side effects of the medication. If, however, you and your doctor decide to use a neuroleptic, this should be done with the utmost care and monitored carefully and regularly.
According to Lewy Body Dementia Association:
Up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity, such as worsening cognition, heavy sedation, increased or possibly irreversible Parkinsonism, or symptoms resembling neuroleptic malignant syndrome , which can be fatal. .
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In June 2021, the U.S. Food and Drug Administration approved Aduhelm for treating patients with Alzheimers disease. Aduhelm is the first new drug approved to treat the disease since 2003 as well as the first to specifically target amyloid-beta – the protein researchers widely believe to play a role in the development of Alzheimer’s.
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Coping With A Diagnosis
Being diagnosed with dementia can be an overwhelming experience. While there is no cure at present for LBD, or any medications aimed at specifically treating LBD, doctors are able to treat many of its symptoms. There are also a number of self-help strategies that can help improve symptoms.
If youve been diagnosed with LBD, its normal to feel many strong and painful emotions, including anger, fear, and uncertainty about the future.
Take time to adjust. As with any major life change, its important to give yourself time to adjust. Expect ups and downs as you do. You may feel that youve come to terms with your new situation for a while, and then suddenly feel overwhelmed by stress again.
Reach out for support. Living with Lewy body dementia is not easy, but there is help for this journey. The more support you have from family and friends, the better youll be able to cope with symptoms.
Talk to your loved ones about your wishes. Its never easy to talk about how you want your healthcare handled when youre unable to make decisions for yourself. But its important to let your loved one know what is important to you. Thinking about your choices today can improve your quality of life in the future and ease the burden on your family.
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.
Stages Of Lewy Body Dementia Our Journey
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For more meaningful terms between professionals, caregivers and patients, a more detailed process in 7 stages, has been described for Alzheimers disease. A more detailed breakdown is helpful, as it allows carers to plan for the level of care that may be required as the illness progresses. The 7 stages of Alzheimers are based on a system developed by Barry Reisberg, M.D., clinical director of the New York University School of Medicines Silberstein Ageing and Dementia Research Center.
Some questions many people have are what are the 7 stages of Lewy body dementia? or how does Lewy body dementia progress? or what are the advanced Lewy body dementia symptoms? Unfortunately throughout my research into dementia with Lewy bodies , although I have come across various breakdowns, I have never come across a similar definitive breakdown of the stages of dementia with Lewy bodies.
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What Are The Types Of Lewy Body Dementia
The two types of Lewy body dementia dementia with Lewy bodies and Parkinsons disease dementia are caused by the same underlying changes in the brain. Over time, these conditions may result in similar symptoms. The main difference is the timing of when thinking and movement symptoms begin.
In dementia with Lewy bodies, problems with thinking, unpredictable changes in attention and alertness, and visual hallucinations develop early in relation to movement symptoms, such as slow movement, difficulty walking, and muscle stiffness.
In Parkinsons disease dementia, movement symptoms start first and are consistent with a diagnosis of Parkinsons disease. Later, problems with thinking and changes in mood and behavior develop. However, not everyone with Parkinsons disease will develop dementia.
Its important to know which type of LBD a person has, both to tailor treatment to symptoms and to understand how the disease will likely progress. For example, some people with LBD may not experience significant movement problems, such as frequent falls and shaking, for several years, while others may have them early on. Knowing what to expect can help people with LBD and their families prepare for changes that may need to be made, for example, to help prevent falls.
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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