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.
Lewy Body Dementia Root Causes & Risk Factors
The exact cause of Lewy body dementia is still unknown, but researchers continue to study and try to figure out this complex disease. We do know that an accumulation of abnormal protein deposits in the brain, or Lewy bodies, are associated with a loss of certain neurons that produce two important neurotransmitters, acetylcholine and dopamine. Acetylcholine is key to the brains ability to remember and learn things while dopamine plays a crucial role in behavior, cognition, movement, motivation, mood and sleep.
Although the cause of Lewy body dementia isnt clear, several factors appear to increase the risk of developing the disease. They include:
- Age Being older than 50. Age is considered the greatest risk factor.
- Gender Being male. Slightly more men than woman have LBD.
- Genetics Having a family member with Lewy body dementia, but LBD is not normally considered a genetic disease. A small percentage of families with dementia with Lewy bodies has a genetic association with the disease. In some cases, its a variant of the GBA gene, but in most cases, the cause is unknown. Currently there is no genetic test that can accurately predict whether someone will develop LBD.
- Other diseases Having Parkinsons disease or REM sleep behavior disorder is linked to a higher risk of LBD.
Expect Changes In Behavior
There are several reasons why someone with LBD may become angry, act out with aggression, or seem depressed. Understand that it is a part of their disease. It is best not to meet anger with even more anger on your part.
Remain patient, identify the cause of their mood change, and do your best to respond. Your loved one may need changes to their environment or even medications to help treat symptoms.
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Coping With Lewy Body Dementia
Coping with Lewy body dementia involves much more than your treatment plan. Its also essential to have access to social support and a safe home.
In the early stages of this condition, symptoms are typically milder, and people with LBD can function. However, as the disease progresses, there will be a severe decline in cognitive and motor abilities, and assisted care will be necessary.
Taking care of your physical healthy by exercising regularly and eating nutritious meals, is also important. Symptoms of anxiety and depression could develop as a result of this condition. Speaking to a therapist who has experience working with people who have dementia, will help.
Behavioral changes are to be expected with LBD. Keeping a diary to track your triggers and what times of the day you experience changes in your behavior, will help you understand your condition better.
Warning About Antipsychotics Important
Per the NIH:
People with Lewy Body Dementia may have severe reactions to or side effects from antipsychotics, medications used to treat delusions, hallucinations, or agitation. These side effects include increased confusion, worsened parkinsonism, extreme sleepiness, and low blood pressure that can result in fainting . Caregivers should contact the doctor if these side effects continue after a few days.
Some antipsychotics, including olanzapine and risperidone , should be avoided, if possible, because they are more likely than others to cause serious side effects.In rare cases, a potentially deadly condition called neuroleptic malignant syndrome can occur. Symptoms of this condition include high fever, muscle rigidity, and muscle tissue breakdown that can lead to kidney failure. Report these symptoms to your doctor immediately.
Antipsychotic medications increase the risk of death in elderly people with dementia, including those with LBD. Doctors, patients, and family members must weigh the risks of antipsychotic use against the risks of physical harm and distress that may occur as a result of untreated behavioral symptoms.
People with Lewy Body Demntia are often sensitive to prescription and over-the-counter medications for other medical conditions. Talk with your doctor about any side effects seen in a person with LBD.
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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.
Rem Sleep Behavior Disorder And Insomnia
Melatonin is a safe, over-the-counter natural substance that may also offer benefit either as monotherapy without risk or in conjunction with clonazepam. Prescription medications may be prescribed.
For insomnia, treatment can be attempted with antidepressants, low doses of benzodiazepines or specific sedative-hypnotic agents. These medications have not been extensively studied in LBD, and worsening confusion and daytime sedation is a potential side effect of sedative-hypnotics.
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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.
About Dr Melita Petrossian
Melita Petrossian, MD, is Director of Pacific Movement Disorders Center and is a fellowship-trained neurologist with clinical interests and expertise in movement disorders such as Parkinsons disease, essential tremor, dystonia, gait disorders, ataxia, myoclonus, blepharospasm, hemifacial spasm, Meige syndrome, spasticity, tics, and Tourettes syndrome.
She also specializes in Parkinsons-related conditions such as Dementia with Lewy Bodies, progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration, primary freezing of gait, and Parkinsons disease dementia.
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Therapy Following Your Diagnosis
Receiving a dementia diagnosis may feel disheartening. You might feel sad, angry, scared, or confused. Speaking with a therapist who works with clients who have received life-threatening medical diagnoses may be helpful. A therapist can help you come to terms with your diagnosis and address any fears you may have.
Emphasize The Abilities That Remain
Instead of thinking and talking about all of the things that have been lost , identify those that are intact and provide opportunities to use them, even if it’s in a modified way.
For example, one gentleman used to be an architect, so his wife brought in a scrapbook that contained many pictures of the buildings he designed. He really enjoyed going through those photos and talking about the work he did. Another gentleman was an artist, so an art work station was set up for him to be able to continue to create art and use his abilities.
These types of experiences help people feel valued and useful. Almost as importantly, they can help the caregivers see the individual as a gifted person who is living with dementia, instead of someone to whom they are simply providing care.
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Restless Leg Syndrome And Periodic Limb Movement Disorder
These conditions often accompany the disorders of synuclein, and each other . The treatment options are identical for the two disorders however, periodic limb movement disorder does not require treatment unless it is disrupting sleep or sleep architecture. There are no trials of restless leg syndrome or periodic limb movement disorder treatment in the context of DLB. The dopamine agonists are not recommended in this setting for the reasons outlined earlier. Standard treatment of restless leg syndrome and limb movement disorder with carbidopa/levodopa, benzodiazepines , and the alpha-2-delta calcium channel ligands are effective in PD patients .
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.
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What To Do If Lewy Body Dementia Symptoms Dont Improve
In some cases, non-drug methods arent enough to reduce or manage challenging symptoms caused by Lewy body dementia.
When someones behavior is aggressive, dangerous, overly disruptive, or significantly impacts their quality of life, additional help is needed.
The best place to start is the doctor who is treating your older adults Lewy body dementia. Theyre familiar with their health history, current medications, and any past reactions to medications.
If their doctor isnt able to help and/or the behavior symptoms are severe, a neurologist, geriatric psychiatrist , or geriatrician who specializes in tough dementia cases may be more helpful.
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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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. .
What Causes Lewy Body Dementia
Lewy body dementia is a broad term covering two separate neurological disorders: dementia with Lewy bodies and Parkinsons disease dementia. The same biological changes to the brain cause both disorders.
A buildup of Lewy bodies causes LBD. Lewy bodies build up in neurons located in certain areas of the brain that are responsible for behavior, movement, and cognitive ability.
Doctors do not know why you or your loved one develop LBD while others do not. There is some thought that the combination of mutation in a persons genes, environmental risk factors and natural aging might lead to the development of LBD in some people. Research into specific causes is ongoing.
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Before Trying Drug Treatments
Treatment of DLB symptoms with drugs often takes some trial and error to get right. This is because everyone responds differently to medication, and there is not much evidence about what works well.
Drugs for improving movement may worsen mental abilities and can make hallucinations worse. There can also be serious risks for a person with DLB if they are treated with medications known as antipsychotics.
If a person goes into hospital or sees a new doctor, the person or their family should check that medical staff know that the person has DLB . This diagnosis should be clearly recorded in the persons notes.
This is important because people with DLB can have a serious reaction to antipsychotic medication that is usually safe for people with other types of dementia to take.
Drugs for concentration problems
Some drugs can help to manage symptoms for a while. These drugs may help some people with DLB improve their attention and alertness, as well as help with problems such as thinking more slowly. They are:
Diagnosis Of Lewy Body Dementia
No single test can be used to definitively diagnose Lewy Body Dementia. Currently, Lewy bodies can only be identified through autopsy. Therefore, the process of diagnosis is similar to that of diagnosing Alzheimer’s Disease and is designed to rule out other possible causes of a person’s symptoms.
A thorough diagnostic evaluation will include physical and neurological examinations , patient and family interviews , and psychological/psychiatric and neuropsychological testing. Click here to return to our previous in-depth discussion of each of these components of a diagnostic workup. In addition, brain imaging scans may be performed.
The following tests may be used in a psychological/psychiatric evaluation:
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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. Reach out to family, friends, neighbors, or in-home healthcare professionals.
- 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 balanced diet so your own health doesnt get derailed.
- Take periodic time out for deep breathing and quiet meditation or soothing music.
- Contact 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 with a therapist.
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.
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What Does Lewy Body Dementia Look Like
Lewy body dementia affects a persons ability to think and process information and it can negatively impact memory and alter personality. Though it shares aspects of other forms of dementia, there are distinct hallmarks of LBD. Lewy body dementia symptoms include:
- Fluctuating attention/alertness: These shifts can last hours or go on for days. The person may stare into space, appear lethargic or drowsy, and have hard-to-understand speech, appearing a lot like delirium. At other times, the person may have much more clarity of thought.
- Visual hallucinations: Often, these are very detailed hallucinations and visions of people or animals, and they can recur.
- Movement disorders: Parkinsons-like movement issues, such as muscle rigidity, tremors, falls, or a shuffling gait or way of walking, may occur.