Susan Schneider Provides Details Of Williams Final Years And Raises Lbd Awareness
Schneider recalled her husband experiencing what seemed like unrelated symptoms which included:
“constipation, urinary difficulty, heartburn, sleeplessness and insomnia, a poor sense of smell and lots of stress. He also had a slight tremor in his left hand that would come and go.”
In her editorial piece written for Neurology, she noted that his symptoms escalated to problems with paranoia and insomnia. She wrote:
I experienced my brilliant husband being lucid with clear reasoning 1 minute and then, 5 minutes later blank, lost in confusion.
According to Schneider, when she and Williams first attended a neurologists office,
Robin had a chance to ask some burning questions. He asked, Do I have Alzheimers? Dementia? Am I schizophrenic? The answers were the best we could have gotten: No, no, no. There were no indications of these other diseases. It is apparent to me now that he was most likely keeping the depth of his symptoms to himself.
Susan Schneider also wrote that the massive proliferation of Lewy bodies throughout Williams brain had done so much damage to neurons and neurotransmitters that you can say he had chemical warfare in his brain. She now serves on the Board of Directors of the American Brain Foundation and works to raise awareness about the neurological disorder that took her husbands life.
Episodes Of Fainting Or Loss Of Consciousness
Episodes of fainting or loss of consciousness is due to dysautonomia . Someone affected by this can have very low blood pressure, which leads to dizziness, fainting spells and loss of consciousness when they stand up quickly. They can also develop supine hypertension, meaning that when they are lying down, the blood pressure will increase significantly.
Lewy Body Dementia Treatment Options
There is currently no cure for Lewy body dementia or therapies to stop or slow its progression. Treatments such as medications, counseling, and physical, occupational, and speech therapies aim to manage symptoms.
Doctors may prescribe medications to treat the cognitive, psychiatric, and motor symptoms of LBD while others may prescribe medication commonly used to treat Parkinsons disease to help with motor issues. Side effects of these medications can include psychiatric and behavioral problems, so the risks must be weighed against the benefits.
A safe living environment, equipment that makes daily tasks easier, and a skilled care team will help improve the quality of life of an individual with this disease. The prognosis for Lewy body dementia is similar to that of Alzheimers and Parkinsons. The average survival time after diagnosis is about eight years but can range from two to 20 years.
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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.
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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What Causes Lewy Body Dementia
In people with LBD, abnormal clumps of a protein called alpha-synuclein accumulate in areas of the brain involved in thinking, memory, and movement. The clumps are called “Lewy bodies” after the doctor who discovered them. They build up inside neurons, or nerve cells, in the brain and cause the neurons not to work well and eventually die. Certain chemicals in the brain that act as messengers between cells are also affected. What causes these changes in the brain is not yet fully understood.
Most cases of LBD are not inherited and rarely does more than one family member have the disease. Certain genetic variants may increase the chance of developing dementia with Lewy bodies, but having a genetic variant does not mean that a person will definitely develop the disease.
How Does Dementia With Lewy Bodies Affect People
The way someone is affected by DLB will depend partly on where the Lewy bodies are in the brain:
- Lewy bodies at the base of the brain are closely linked to problems with movement. These are the main feature of Parkinsons disease.
- Lewy bodies in the outer layers of the brain are linked to problems with mental abilities, which is a feature of DLB and other types of dementia.
When DLB starts to affect someone, early symptoms may not cause too many difficulties. Gradually though, these get worse and cause problems with everyday living.
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Symptoms Of Dementia With Lewy Bodies
People with dementia with Lewy bodies may have:
- hallucinations seeing, hearing or smelling things that are not there
- problems with understanding, thinking, memory and judgement this is similar to Alzheimer’s disease, although memory may be less affected in people with dementia with Lewy bodies
- confusion or sleepiness this can change over minutes or hours
- slow movement, stiff limbs and tremors
- disturbed sleep, often with violent movements and shouting out
- fainting spells, unsteadiness and falls
These problems can make daily activities increasingly difficult and someone with the condition may eventually be unable to look after themselves.
How Can We Manage Hallucinations
It may not be necessary to treat all hallucinations of a person with DLB. Hallucinations are often harmless, and it is okay to allow them to happen, as long as they are not disruptive or upsetting to the person or his/her surroundings. Sometimes, recognizing the hallucination and then switching the topic might be an efficient way of handling frustrations that occur because of a hallucination. If hallucinations need medical treatment, your provider may be able to discuss and suggest some options. However, most medications used to treat hallucinations may make movement symptoms worse.
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Parkinsons Disease Dementia And Dementia With Lewy Bodies
The key pathological hallmark found in brains of Parkinsons disease and Parkinsons disease dementia patients are abnormal microscopic deposits composed of alpha-synuclein. This protein is found widely in the brain but its normal function is not yet well understood. The deposits are called Lewy bodies. Lewy bodies are also found in several other neurodegenerative brain disorders, including dementia with Lewy bodies . Evidence suggests that Parkinsons disease and Parkinsons disease dementia, and dementia with Lewy bodies, may be linked to the same underlying abnormalities in brain processing of alpha-synuclein.
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About Dementia With Lewy Bodies
Dementia with Lewy bodies, also known as Lewy body dementia, is a common form of dementia estimated to affect more than 100,000 people in the UK.
The term “dementia” describes a loss of mental ability associated with gradual death of brain cells. It’s rare in anyone younger than 65.
Symptoms usually develop gradually and become more severe over the course of several years.
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Symptoms In The Later Stages Of Dementia With Lewy Bodies
DLB generally progresses over a period of several years. In the later stages of the disease, the person may:
- start to have more problems with their day-to-day memory
- become much more easily upset or distressed, resulting in agitation, restlessness, or shouting out
- walk more slowly and less steadily, causing a higher risk of falling and serious injury
- have speech and swallowing problems that may lead to chest infections or a risk of choking
- have problems with eating and drinking chewing and swallowing may become more difficult, and the persons stomach and gut may not move food around the body properly, leading to a loss of appetite as well as nausea and discomfort.
Treatment and support for dementia with Lewy bodies
There is currently no cure for DLB, but there are both drug and non-drug treatments that can support the person to live well.
What Can I Expect If I Or My Loved One Have A Diagnosis Of Lewy Body Dementia
Each persons experience with Lewy body dementia is unique to them. How slowly or quickly the disease progresses is impossible to know, but may be influenced by your general health and any existing diseases you may have. Because LBD is a progressive disease, difficulties with mind and body functions get worse over time. Currently, there is no known way to stop the progression of the disease. After diagnosis, most people with LBD live between five and seven years. Some people with LBD live up to 20 years after their diagnosis.
However, theres always hope. Research on LBD, dementia with lewy bodies, Alzheimers disease, Parkinsons disease with dementia are ongoing. New medications are being developed and new approaches to treatment are being investigated.
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Reactions To Antipsychotic Medications
Hallucinations are common in LBD however, some of the medicines that are classified as antipsychotic medications typically prescribed to treat hallucinations can trigger severe and sometimes life-threatening reactions in people who have LBD.
According to the Lewy Body Dementia Association, approximately 25-50% of people with LBD may respond negatively to these medicines. Thus, early diagnosis and appropriate treatment are both critically important in LBD.
When To See Your Gp
See your GP if you think you have early symptoms of dementia, especially if you’re over 65.
If you’re worried about someone else, encourage them to see their GP. You could suggest that you go with them.
The GP can do some simple checks to try to find the cause of your symptoms. They will refer you to a memory clinic or another specialist for further tests if needed.
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Lewy Body Dementia Diagnosis
There are currently no medical tests that provide a definitive diagnosis of Lewy body dementia. A doctor will make a probable diagnosis based on a patients medical history, neurological and physical exams, test results, and symptoms. Depending on the individuals symptoms, blood tests or brain imaging can also provide additional information and be used to rule out other conditions. Currently, LBD can only be definitively diagnosed with a brain autopsy after death.
Because symptoms of Lewy body dementia are similar to those of Alzheimers and Parkinsons diseases, it can be difficult for doctors to definitively diagnose LBD. Patients with these three neurodegenerative diseases often experience overlapping symptoms and the abnormal protein clusters called Lewy bodies. As a result, they can be easily mistaken for one another. The presence of Lewy bodies in the brains of people with Alzheimers and Parkinsons diseases suggests that LBD may be related to these other causes of dementia, or that a person can have more than one degenerative brain disease at the same time.
How Is Lewy Body Dementia Diagnosed
There isn’t one test that can diagnose LBD. It is important to see an experienced doctor to get a diagnosis. This would usually be specialist such as a neurologist. The doctor will:
- Do a medical history, including taking a detailed account of the symptoms. The doctor will talk to both the patient and caregivers.
- Do physical and neurological exams
- Do tests to rule out other conditions that could cause similar symptoms. These could include blood tests and brain imaging tests.
- Do neuropsychological tests to evaluate memory and other cognitive functions
LBD can be hard to diagnose, because Parkinson’s disease and Alzheimer’s disease cause similar symptoms. Scientists think that Lewy body disease might be related to these diseases, or that they sometimes happen together.
It’s also important to know which type of LBD a person has, so the doctor can treat that type’s particular symptoms. It also helps the doctor understand how the disease will affect the person over time. The doctor makes a diagnosis based on when certain symptoms start:
- If cognitive symptoms start within a year of movement problems, the diagnosis is dementia with Lewy bodies
- If cognitive problems start more than a year after the movement problems, the diagnosis is Parkinson’s disease dementia
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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.
Stages Of Lewy Body Dementia
One of the most common forms of dementia is Lewy body dementia. Early signs of this disease can easily be confused with Alzheimers or even schizophrenia, according to nia.nih.gov. LBD can either simply develop over time or in combination with several other brain disorders.
This progressive disease does take a long time for symptoms to develop and show. Typically, the time span from diagnosis to death is 5-8 years, but some studies have shown 2-20 years is a possible range, as well. Here are the seven stages of LBD:
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What Is Parkinsons Disease
PD is a chronic, neurodegenerative movement disorder. PD affects 1 out of every 100 individuals over the age of 601, and patients commonly experience muscle rigidity, changes in speech and walking, and tremors. Some studies suggest that having PD also increases your risk of developing LBD, but most patients have only one of these conditions.2
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.
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Alzheimer’s Disease Symptoms In Lbd:
- Memory loss
- Confusion and memory loss fluctuate more than in Alzheimers disease
- Visual hallucinations and/or delusions are common
- Depression
- Rapid Eye Movement sleep behavior disorder
Families often report being very confused by the terminology related to Lewy body dementia. At times the disease is referred to as dementia with Lewy bodys or Parkinsons disease dementia .
The diagnostic workup for LBD generally includes collection of family history, neuropsychological testing, bloodwork, neurological exam, medical history, and a magnetic resonance imaging scan. There is no medication developed specifically for Lewy body dementia but, based on present symptoms, the physician will initiate treatment.
The medications for Alzheimers disease, which are cholinesterase inhibitors, may be initiated by the attending physician to help treat LBD. The cholinesterase inhibitors include donepezil , Rivastigmine or Galantamine . Should movement symptoms be primary, the physician may start treatment with Carbidopa/Levodopa, a commonly used medication for Parkinsons disease.
While some people with Lewy body dementia are helped by Carbidopa/Levodopa others develop hallucinations. Often, if the Carbidopa/Levodopa is stopped, the hallucinations with stop. If movement symptoms were helped by the Carbidopa/Levodopa, the patient and physician will need to discuss how to proceed.
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.
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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.