Caring For Someone With Lewy Body Dementia
Caring for someone with LBD, or any form of dementia, is hugely challenging. Just as LBD can impact every aspect of a person, caring for someone with the disease can impact every aspect of your daily life. Youll likely face tests of stamina, problem solving, and resiliency. However, your caregiving journey can also be an intensely rewarding experience as long as you take care of yourself and get the support that you need.
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.
Treating Movement Symptoms In Lewy Body Dementia
LBD-related movement symptoms may be treated with medications used for Parkinson’s disease, called carbidopa-levodopa. These drugs can help make it easier to walk, get out of bed, and move around. However, they cannot stop or reverse the disease itself. Side effects of this medication can include hallucinations and other psychiatric or behavioral problems. Because of this risk, physicians may recommend not treating mild movement symptoms with medication. Other Parkinson’s medications are less commonly used in people with LBD due to a higher frequency of side effects.
People with LBD may benefit from physical therapy and exercise. Talk with your doctor about what physical activities are best.
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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.
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.
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Rem Sleep Behaviour Disorder
Rapid Eye Movement Sleep Behaviour Disorder is a sleep disorder characterized by repeated episodes of arousal, often associated with vocalizations and/or complex motor behaviours arising during REM sleep. Almost 90% of patients diagnosed with a REM sleep behaviour disorder will later develop a Parkinson’s-plus disorder such as Parkinson’s Disease , Dementia with Lewy Bodies , and Multiple System Atrophy.
Is Dementia A Mental Illness And How Is It Diagnosed
More than a century ago dementia was used by doctors to cover a very broad range of mental health conditions, including many diseases where the symptoms of cognitive decline were not permanent, and pretty much anyone who showed signs of cognitive dysfunction was considered to be demented. Age related dementia cases were relatively rare a hundred years ago due to the fact the majority of people did not live long enough to fall victim to diseases such as Alzheimers.
For dementia to be diagnosed as a condition in todays more enlightened times, the symptoms must have been present for at least six months. Unlike recognized mental illnesses such as schizophrenia and borderline personality disorder, the symptoms of dementia are normally permanent and tend to occur in patients aged 65 and above. However, a small percentage of dementia cases are seen in younger patients and this is referred to as early onset dementia.
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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.
Lewy Body Dementia Natural Treatment
1. Avoid Food Triggers
Diet plays a key role in cognitive decline and disorders like LBD or DLB. Here are some foods to avoid to help prevent hte development of cognitive disorders.
2. Eat Foods that Heal
To help Lewy body dementia, follow a low-carb diet thats low in sugar yet nutrient-dense, high in good fats and loaded with anti-inflammatory foods. Healthy fats help mental disorders like Lewy body dementia because they facilitate proper thought-processing, hormone production and stress reduction mechanisms happening within the brain.
A ketogenic diet has been shown to be neuroprotective and very helpful for the dementia that comes with Lewy body dementia. A ketogenic diet is made up of around 70 percent to 80 percent fat, which helps the brain. On this kind of diet, your body is able to burn fat for energy and utilize fatty acids, two critical things for the brain and for the natural treatment of dementia.
Here are the foods you should consume to help treat or prevent LBD.
3. Take Beneficial Supplements
Melatonin is often used by Lewy body dementia patients to help with sleep problems. Fiber supplements are also commonly taken and recommended if constipation is an issue. Probiotics can also help greatly when it comes to constipation and mood.
For brain health, the following can also be helpful:
5. Pet Therapy
Listening to soothing music on a regular basis can help to reduce and calm symptoms of LBD.
9. Daily Mental Stimulation
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How Is Lewy Body Dementia Treated Is There A Cure
There is no cure for Lewy body dementia . Medications and nonmedical therapies, like physical, occupational and speech therapies, manage symptoms as much as possible.
Medications called cholinesterase inhibitors help manage the cognitive symptoms of LBD. Memantine may also be helpful. Symptoms of Parkinsonism, like tremors, are usually treated with levodopa, a drug commonly used to treat Parkinsons disease.
You or your loved one may also benefit from treatments like physical therapy or speech therapy. These treatments help retain physical function and improve muscle strength.
Treating Dementia With Lewy Bodies
There’s currently no cure for dementia with Lewy bodies, but treatments can help manage the symptoms.
First of all, your future health and social care needs will need to be assessed and a care plan drawn up.
This is a way of ensuring you receive the right treatment for your needs. It involves identifying areas where you may need some assistance, such as:
- what support you or your carer need for you to remain as independent as possible
- whether there are any changes that need to be made to your home to make it easier to live in
- whether you need any financial assistance
Read more about care plans
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Genetic Study Of Lewy Body Dementia Supports Ties To Alzheimers And Parkinsons Diseases
In a study led by National Institutes of Health researchers, scientists found that five genes may play a critical role in determining whether a person will suffer from Lewy body dementia, a devastating disorder that riddles the brain with clumps of abnormal protein deposits called Lewy bodies. Lewy bodies are also a hallmark of Parkinsons disease. The results, published inNature Genetics, not only supported the diseases ties to Parkinsons disease but also suggested that people who have Lewy body dementia may share similar genetic profiles to those who have Alzheimers disease.
Lewy body dementia is a devastating brain disorder for which we have no effective treatments. Patients often appear to suffer the worst of both Alzheimers and Parkinsons diseases. Our results support the idea that this may be because Lewy body dementia is caused by a spectrum of problems that can be seen in both disorders, said Sonja Scholz, M.D., Ph.D., investigator at the NIHs National Institute of Neurological Disorders and Stroke and the senior author of the study. We hope that these results will act as a blueprint for understanding the disease and developing new treatments.
The study was led by Dr. Scholzs team and researchers in the lab of Bryan J. Traynor, M.D., Ph.D., senior investigator at the NIHs National Institute on Aging .
These results provide a list of five genes that we strongly suspect play a role in Lewy body dementia, said Dr. Traynor.
How Is Lewy Body Disease Treated
There is no cure for Lewy body disease, but a doctor may treat the symptoms with:
- Alzheimer’s disease medications to reduce hallucinations and behavioural problems
- Parkinson’s disease medications to improve rigid muscles and slow movement
- sleep medicines
Some medicines, such as antipsychotics, can make symptoms worse and may be dangerous. There are, however, other ways of dealing with symptoms, including:
- learning to manage a person’s behaviour
- learning how to calm the person down
- changing their environment to help them function
- creating daily routines
- using therapies, such as physiotherapy, occupational therapy and speech and language therapy
- providing cognitive stimulation
People with Lewy body disease usually need help at home and eventually care in a nursing home. The disease progresses differently in different people. After they develop symptoms, people live on average for another 6 to 12 years, although some live much longer.
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Coping With Cognitive Changes
Some medications used to treat Alzheimer’s disease also may be used to treat the cognitive symptoms of LBD. These drugs, called cholinesterase inhibitors, act on a chemical in the brain that is important for memory and thinking. They may also improve hallucinations, apathy, and delusions. The U.S. Food and Drug Administration has approved one Alzheimer’s drug, rivastigmine, to treat cognitive symptoms in Parkinson’s disease dementia. Several other drugs are being tested as possible treatments for LBD symptoms or to disrupt the underlying disease process.
Going For A Diagnosis
The earlier the main symptoms are identified the more likely the correct diagnosis will be made.
Most GPs will only see a person with LBD on rare occasions, so it will help if you keep a record of your symptoms and how often they occur, and question whether your doctor thinks LBD may be the cause.
The diagnosis is best made by people who have the most experience in dealing with the problem. These are usually Old Age Psychiatrists, Geriatricians and Neurologists . Ask for a referral to one of these specialists. Your GP will generally know who the most suitable person locally is.
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How Dementia With Lewy Bodies Is Managed
There is no cure for dementia with Lewy bodies or any medication that will slow it down.
However, a few different medicines can be effective in controlling some of the symptoms. In particular, acetylcholinesterase inhibitors have been shown to improve symptoms such as hallucinations and confusion in some people.
Supportive treatments such as physiotherapy, occupational therapy, and speech and language therapy can help improve any problems with movement, everyday tasks, and communication.
Psychological therapies and specific dementia activities, such as memory cafés, can also help with memory loss, confusion, and feelings of disorientation.
Read more about treating dementia with Lewy bodies
Stages And Progression Of Lewy Body Dementia
Claudia Chaves, MD, is board-certified in cerebrovascular disease and neurology with a subspecialty certification in vascular neurology.
If you or someone you know has recently been diagnosed with Lewy body dementia, you might be wondering what to expect as the disease progresses. Is there a fairly typical progression like Alzheimer’s disease where it begins in early stages that are fairly uniform, then moves to middle stages and then to late stages? In Lewy body dementia, the answer is a bit more complicated.
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Diagnosing Dementia With Lewy Bodies
If you think you may have early symptoms of dementia, it’s a good idea to see your GP. If you’re worried about someone else, encourage them to make an appointment, and perhaps suggest that you go along with them.
Your GP can do some simple checks to see if there is chance you could have dementia, and they can refer you to a memory clinic or another specialist clinic if necessary.
At one of these clinics, you will be asked about your symptoms and have a physical check-up and memory test. You may also have blood tests and brain scans.
The results of these checks and tests will give your doctor a good idea as to whether your symptoms are caused by dementia with Lewy bodies, another type of dementia, or something else entirely.
How Is Lbd Different From Parkinsons Or Alzheimers
These diseases are similar in a lot of ways. But there are some key differences in the symptoms that affect people with LBD and when those symptoms happen.
LBD may not cause short-term memory loss like Alzheimerâs. People with both conditions have trouble with thinking, alertness, and paying attention. But in LBD, those problems come and go. The disease can also cause hallucinations, often in the first few years someone has LBD. People with Alzheimerâs usually donât have hallucinations until the later stages.
People with LBD also often act out their dreams and make violent movements when theyâre asleep. Itâs called REM sleep behavior disorder. Sometimes, itâs the first sign that someone has LBD.
LBD and Parkinsonâs disease both cause movement problems, like stiff muscles and tremors. But most people with Parkinsonâs donât have problems with their thinking and memory until the very later stages of their disease. Sometimes, they donât have it at all. In the type of LBD known as Parkinsonâs disease with dementia, these problems begin much sooner.
People with LBD also need different drugs for their condition than the ones that treat Parkinsonâs or Alzheimerâs.
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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.
What Is Lewy Body Dementia Robin Williams’ Illness Explained
Robin Williams’post-death diagnosis of Lewy body dementia unknowingly put him in the company of more than one million Americans dealing with brain changes caused by the disease.
The star died by suicide in 2014 and his family didn’t fully understand what he was going through until the results of his autopsy.
“I was relieved it had a name,” Susan Schneider Williams, his widow, said of the illness as she shared her husband’s story in the documentary “Robin’s Wish,” available Sept. 1 on demand and on digital platforms.
“Robin and I had gone through this experience together, really being chased by an invisible monster. And it was like whack-a-mole with the symptoms. I left there with a name of the disease, the thing that Robin and I had been searching for.”
The condition reportedly caused the actor to experience anxiety attacks and motor-skill problems.
Famed DJ Casey Kasem also died in 2014 after being diagnosed with Lewy body dementia.
Ted Turner revealed his diagnosis of Lewy body dementia in 2018. The business tycoon and cable news pioneer, now 81, said he had been feeling exhausted and forgetful.
While Alzheimers disease is the most common form of degenerative dementia, Lewy body dementia is the second-most common form, according to the Lewy Body Dementia Association. LBD is often misdiagnosed as Alzheimers, but the two conditions have different causes and symptoms, Dr. James E. Galvin, a professor of neurology at NYU Langone Medical Center, told NBC News.
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