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How Long Do People Live With Lewy Body Dementia

Variables Impacting Life Expectancy Calculations

Living with Lewy Body Dementia – Mayo Clinic

Gender. Men dont live as long with Alzheimers as women. A study of more than 500 people diagnosed with Alzheimers disease between 1987 and 1996 found that women with Alzheimers live, on average, 20% longer than men. Age. Someone diagnosed at 65 lives an average of about eight years, while someone over 90 who gets a diagnosis typically lives about three-and-a-half more years. Strength of Symptoms at Diagnosis. If someone is showing especially severe dementia-related problems at the time of diagnosis, this usually leads to an earlier death. Someone who wanders, is prone to falling, and experiences urinary incontinence , will typically not live as long. A lower mini-mental state examination score at the time of diagnosis will also not live as long. Other Health Problems. A person with a history of heart problems or asthma or diabetes, for example, will not live as long as someone without those underlying issues.

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.

Medications At The End Of Life

Many participants described stopping DLB medications near EOL. Occasionally this was associated with a decline:

I would swear in a court of law that the galantamine worked for her And when I couldnt get her to take it is really when I started noticing the decline.

Hospice commonly provided morphine for pain, breathing, or overall comfort. Many participants felt that morphine resulted in a peaceful death, but several participants described morphine as insufficient to address pain or causing paradoxical symptoms. Often hospice needed to supplement morphine with benzodiazepines. Multiple participants described using haloperidol from hospice comfort packs. In one case, this resulted in a severe reaction:

He looked at the strings hanging down from the overhead lights and he thought they were a noose. I mean, it wasn’t anything you know, anything I was worried about. I was just relating to how things had been going. And she suggested Haldol. And I didn’t research it About two, two and a half hours since he had his Haldol He was suddenly sitting upright Every muscle in his body was clenched. His mouth was clenched. It was opening and closing, opening and closing. His tongue was thrusting out. He almost bit his tongue off at one point and he was groaning and moaning, and he was in terrible pain His temperature skyrocketed From there, his kidneys shut down, and he was gone by Tuesday morning.

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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.

Dementia With Lewy Bodies

Pin by Kathy Spellman on Long Term Care
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
Variable average survival 4 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 impairment 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.

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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.

The Link To Parkinsons Disease

Most people with Parkinsons disease have Lewy bodies in their brains. Its these clusters that cause some or all of the motor symptoms of Parkinsons disease, as well as memory or cognitive problems, visual hallucinations, and problems with alertness.

We rarely know if a living patient has Lewy bodies with certainty, however. Its not until an autopsy that they can be seen, says Liana Rosenthal, M.D., assistant professor of neurology at the Johns Hopkins University School of Medicine. If we see Lewy bodies in someones brain during an autopsy, thats considered a pathologic certainty of Parkinsons disease, she says.

As with Parkinsons, Lewy body dementia is associated with a depletion of certain neurotransmitters in the brain. These are:

  • Dopamine: This neurotransmitter helps transmit signals that control muscle movement. When the accumulation of Lewy bodies blocks dopamines production and transmission, the result is the hallmark movement issues of Parkinsons disease.
  • Acetylcholine: This neurotransmitter does its work in the parts of the brain responsible for memory, thinking and processing. When Lewy bodies build up in these areas, they interfere with acetylcholine, causing symptoms of dementia.

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Coping With Lewy Body Dementia

Getting a positive diagnosis of dementia with Lewy bodies can be quite challenging for anyone. A person who is having a hard time accepting the situation may have to go through counseling to help them cope with the diagnosis.

Other steps that people can take to live with the illness day to day include

Getting Help

The affected person may want to share their diagnosis with close family and friends. This allows them to understand the changes that a person is going through so that they can offer the support the individual needs.

A support team is important in the life of a person who has LBD. This is because as the illness progresses, it may become difficult to manage daily tasks like paying bills, taking medication, grooming, and driving.

Help from friends, relatives, and professional caregivers come in handy. Finding local support groups can also help a person meet others who are in the same situation and they can help each other forge ahead.

Pay Attention to Safety

Changes in movement and thinking that occur with the illness requires a person to consider safety. Some of the measures a person can take include carrying an LBD medical alert wallet.

This is usually presented any time a person meets with their doctors, required emergency medical care, or has been hospitalized. The card contains essential details about medication sensitivities and can help save a life.

Planning for the Future

Find Something to Enjoy Daily

Approaching End Of Life

Lewy Body Dementia: How to talk to a loved one

Participants related that individuals with DLB were often ready for death.

She had been saying, for a while, that she just wanted to go to heaven.

She knew it was coming, the end, and then she started shutting down. And she decided not to want to eat anymore.

Several participants were frustrated when acceptance of death was followed by a delay.

When it got to that point, there was underlying fear that it wouldnt be it yet, and it was a fear because she was really ready to die finally.

Many family members could tell when EOL was approaching. Experience of the final days to weeks of life, though, varied substantially. Several participants described a difficult prolonged deathwatch, while others described a peaceful process . There was widespread agreement that timing of death was difficult to predict and often longer than was anticipated by family members.

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When To See A Lewy Body Dementia Specialist

If a person suspects that they have LBD, the first stop they make is to their primary caregiver. The physician will want to know the symptoms a person is experiencing before referring them to an LBD specialist.

To prepare for an appointment it is advisable to plan and write a list of important details like:

  • A detailed description of all the symptoms a person is experiencing
  • A list of medical conditions that an individual may have as well as medical history
  • A list of all medications, supplements, or vitamins a person is taking
  • Questions and concerns to share with the professional

In most cases, the doctors who diagnose and recognize Lewy body dementia are expert neurologists who specialize in dementia and movement disorders.

Geriatric psychiatrists and geriatricians can also identify the progressive disease.

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

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Treatment For Lewy Body Dementia

Lewy Body Dementia is very difficult to treat. Unfortunately, people with this illness often cannot tolerate antipsychotic medications, which might otherwise be helpful in treating symptoms like delusions and hallucinations. Negative reactions to antipsychotic medications can include a worsening of symptoms, extreme muscle rigidity, or even catatonia – which can take the form of apathy and complete motionlessness or constant overexcitement. In addition, as discussed before, people with LBD who use antipsychotic medications may develop a serious and potentially life threatening condition called Neuroleptic Malignant Syndrome.

Medications: No drugs have been approved by the FDA to specifically treat Lewy Body Dementia, but Alzheimer’s medications are sometimes helpful. In fact, some researchers assert that people with Lewy Body Dementia respond better to cholinesterase inhibitors than individuals with any other type of dementia.

Because Parkinsonian symptoms are prevalent in Lewy body dementia, medications used for Parkinson’s Disease which boost the production and effectiveness of the neurotransmitter dopamine are often used to treat movement symptoms. However, they can also increase confusion, delusions, and hallucinations.

Antidepressants and anticonvulsants are sometimes used to treat the sleep and mood problems associated with Lewy Body Dementia, but they can also increase a person’s level of confusion and motor problems.

How Does Lewy Body Dementia Differ From Alzheimer’s

Webinar: What is Lewy body dementia really like?

Though the two disorders have some symptoms in common, LBD differs from Alzheimer’s in a few ways:

  • Memory problems tend to surface later in LBD. Loss of memory is often one of the first clear symptoms of Alzheimer’s.
  • There may be movement problems earlier in LBD.
  • Delusions aren’t a common symptom of Alzheimer’s disease. Having visual hallucinations are common in people with LBD , even in the early stages. People with LBD may also hear and smell things that aren’t there.
  • Sudden changes in mood or behavior are more common with LBD. People with LBD may be alert and attentive one minute, confused and drowsy a short time later. Their behavior may change from day to day, not following any routine or pattern.
  • Disruption of the autonomic nervous system is more common in LBD. This can cause a sudden drop in blood pressure leading to falls and dizziness. It may also cause bladder control issues.

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Treatment Options For Lewy Body Dementia

Treatment for dementia with Lewy bodies is not easy because there is still no cure for the progressive disease. Most of the time, doctors will try and treat individual symptoms through a variety of options such as:


Certain medications can be prescribed to persons who have LBD. Research shows that persons who have this progressive illness are sensitive to medication.

It is therefore, important for medications to be prescribed with caution and careful monitoring. Some of the drugs include:

Cholinesterase inhibitors

These are Alzheimers drugs like donepezil, rivastigmine, and galantamine. They are believed to help increase the levels of chemical messengers that are vital for memory, judgment, and thought in the brain.

It can help enhance cognition, alertness, and reduce hallucinations as well as other behavioral issues.

Parkinsons disease Drugs

Medications like carbidopa-levodopa might help to reduce some of the signs and symptoms of Parkinsons disease. These include slow movement and rigid muscles.

Medicine for other Symptoms

Physicians may also prescribe drugs that treat other symptoms associated with the progressive illness like movement or sleep issues. People who experience sleep disturbances can get melatonin and low-dose clonazepam.

Other drugs can be used to treat blood pressure and any other symptoms that a person may have.

Lewy Body Dementia Complete Guide

Also known as dementia with Lewy bodies, Lewy Body dementia is a progressive illness that involves abnormal deposits of a protein known as alpha-synuclein in the brain.

These deposits are referred to as Lewy bodies.

They got their name from Friedrich H. Lewy, the scientist behind their discovery. Lewy bodies grow in the brains nerve cells affecting thinking and motor control.

It is the second-most common type of dementia after AD . Lewy bodies affect different regions in the brain such as:

  • The Cerebral Cortex: It is the part of the brain that controls multiple functions including perception, information processing, language, and thought.
  • The Limbic Cortex: It plays a primary role in behavior and emotions
  • The Midbrain and Basal Ganglia: These play a major role in movement.
  • The Hippocampus: This is vital for forming new memories.
  • The Brain Stem: It is essential for maintaining alertness and regulating sleep.
  • Sections of the brain important in identifying smells.

It is estimated that about 1.4 million people in America have dementia with Lewy bodies. The number, however, could be more because there are many cases that go undiagnosed.

Keep reading to uncover more essential details about LBD.

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Stage Five: Moderately Severe Cognitive Decline

Stage five is marked by moderately severe cognitive decline. Individuals in this stage often have notable memory loss and begin to struggle with daily activities. Significant details such as address or phone number may be difficult to recall, and those with stage five dementia will likely need assistance with tasks such as meal preparation and bathing.

Icipate In Activities You Enjoy

LIVING WITH LEWY BODY DEMENTIA Ep. 4 | Pet Scan and Swallow Study

Despite the many challenges and adjustments that come with an LBD diagnosis, you can have moments of love, humor, tenderness, and gratitude with the people closest to you. Your attitude can help you find enjoyment in daily life.

Make a list of events and activities you can still enjoy then find a way to do them! For example, listen to music, exercise, or go out for a meal with family and friends. If you can’t find pleasure in daily life, talk with your doctor or another health care professional about effective ways to cope. Let your family know if you are struggling emotionally so they can offer support.

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Behavioral And Mood Symptoms Of Lewy Body Dementia

Changes in behavior and mood are possible in LBD and may worsen as the persons thinking abilities decline. These changes may include:

  • Depression
  • Apathy, or a lack of interest in normal daily activities or events and less social interaction
  • Anxiety and related behaviors, such as asking the same questions over and over or being angry or fearful when a loved one is not present
  • Agitation, or restlessness, and related behaviors, such as pacing, hand wringing, an inability to get settled, constant repeating of words or phrases, or irritability
  • Delusions, or strongly held false beliefs or opinions not based on evidence. For example, a person may think his or her spouse is having an affair or that relatives long dead are still living.
  • Paranoia, or an extreme, irrational distrust of others, such as suspicion that people are taking or hiding things

Who Gets Dementia With Lewy Bodies

Around 5% of people with a diagnosis of dementia are recorded as having DLB, but there is good evidence that the condition is under-diagnosed. Scientists think DLB may account for up to 20% of all dementia.

Dementia with Lewy bodies affects men and women roughly equally. As with most other types of dementia, DLB becomes increasingly common over the age of 65. It can also affect people younger than this.

There is not much evidence that anything we might be exposed to during our lives increases the risk of DLB. Having a traumatic head injury may increase the risk of developing Parkinsons disease later in life, but its not known whether this also applies to DLB.

Almost all people who develop DLB have a sporadic form, which means that the main cause is unknown. Some genes may increase the risk of developing DLB.

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