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What Are The Late Stages Of Lewy Body Dementia

Is Artificial Nutrition And Hydration A Good Idea

Lewy body dementia and its rapid decline

Most health professionals now feel that a person with advanced dementia and in the end stage of their illness should not be fed by tubes or drips. This is because inserting tubes or IV drips requires hospital admission, which can be very distressing for the person. They may then pull out the tubes and drips, and the site of the tubes and drips can become infected and sore.

He was very distressed in hospital and kept pulling out his tubes he didnt understand what was happening to him and they didnt know how to help him.

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Signs Of The Dying Process

As someones condition gets worse and they are within a few days or hours of dying, further changes are common. The person may:

  • deteriorate more quickly than before
  • lose consciousness
  • develop an irregular breathing pattern
  • have a chesty or rattly sound to their breathing
  • have cold hands and feet.

These changes are part of the dying process when the person is often unaware of what is happening.

Recognizing The Signs Of Stage Four Lewy Body Dementia

December 5, 2019 by Norma Loeb

Lewy Body Dementia develops in stages and a diagnosis is often difficult to determine in the earliest phases of the disease. While the first symptoms of LBD may be subtle and easy to brush off, stage four is when many individuals living with dementia are officially diagnosed. During this stage, doctors are able to determine a diagnosis with an exam, and loved ones will notice the presence of symptoms, such as life-altering forgetfulness and difficulty with daily activities. Stage four of LBD is categorized as moderate cognitive decline. Not sure what to look for in this stage of dementia? Here, we share the telltale signs of moderate cognitive decline. If you notice these symptoms in your loved one, please seek an exam from a medical professional whos familiar with Lewy Body Dementia. We have listings of neurologists and geriatricians throughout the United States on our website at under Resources/Professionals.

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When Should I See My Healthcare Provider About Lewy Body Dementia

If you or a loved one are experiencing symptoms of Lewy body dementia, talk to your healthcare provider.

If youve been diagnosed with Lewy body dementia, youll need to see your healthcare team regularly to monitor your health and symptoms and to make sure your medications are working.

A note from Cleveland Clinic

Learning early that you have a diagnosis of Lewy body dementia allows you and your family to plan for a meaningful quality of life together and enables you to get your legal, financial and healthcare plans and desires in order. Your healthcare team will be ready to provide education, support and care for you or your loved one. Ask your team for information on local LBD support groups as well. Support groups can be very helpful for sharing care tips and providing comfort in knowing youre not alone.

Last reviewed by a Cleveland Clinic medical professional on 08/18/2022.


  • Genetic and Rare Diseases Information Center. Lewy Body Dementia. Accessed 8/18/2022.
  • Haider A, Spurling BC, Sánchez-Manso JC. Lewy Body Dementia. . In: StatPearls . Treasure Island : StatPearls Publishing 2022. Accessed 8/18/2022.
  • Merck Manual Professional Version. Lewy Body Dementia and Parkinson Disease Dementia. Accessed 8/18/2022.
  • National Institutes of Neurological Disorders and Stroke. Dementia with Lewy Bodies Information Page. Accessed 8/18/2022.
  • National Institute on Aging. What Is Lewy Body Dementia? Causes, Symptoms, and Treatments. Accessed 8/18/2022.

What Is Lewy Body Dementia Causes Symptoms And Treatments

Dementia  Types, Symptoms, Causes, Tests, Treatment And Care

On this page:

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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Approximate Lewy Body Dementia Phases Symptoms And Considerations

Lewy Body Dementia Stage 1 Possibilities

Most caregivers are concerned/worried that something is not right. Symptoms from later stages can also appear this early on the continuum. At the end of this phase, cognitive impairment is difficult to deny.

Symptoms and subtle changes may include:

  • Increased daytime sleep: two-plus hours
  • Vision affected
  • Hearing affected
  • Speech difficulty
  • Physical coordination diminished
  • Posture altered
  • Chronic runny nose
  • Ability to learn new tasks affected
  • Short term memory impacted
  • Thinking/learning/ problem solving difficulties suggest dementia
  • Mood: Depressed/Anxiety
  • Able to engage independently in leisure activities
  • Handwriting is affected
  • Impairments with financial responsibilities
  • May still be able to maintain employment
  • May be able to hide symptoms
  • Socialization still possible
  • May accuse spouse of infidelity
Lewy Body Dementia Stage 2 Possibilities

Caregivers consult with an elder law attorney by this point: at very least have a Power of Attorney and Medical Power of Attorney document on the patient. Protect assets: family, friends, caregivers may be able to take financial advantage of LO. Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.

Symptoms are usually clearer by this point:

Increased difficulty with:

Lewy Body Dementia Stage 3 Possibilities
Lewy Body Dementia Stage 4 Possibilities
Lewy Body Dementia Stage 5 Possibilities
  • Sue Lewis of West Virginia, USA

Understanding Lewy Body Dementia

Lewy body dementia symptoms are so similar to those of other forms of dementia that LBD can be misdiagnosed. This might make more sense when you consider that there are many types of dementia.

It may help to think of dementia as one large “umbrella” that slowly robs people of their ability to think, talk, remember, and use their bodies. Many diseases crowd underneath this umbrella, including:

  • Alzheimers disease

With dementia with Lewy bodies, cognitive changes may appear earlier than, about the same time, or shortly after any physical changes surface.

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Final Stages Of Lewy Body Dementia

Lewy body dementia, or LBD, is a common cause of dementia. According to the Lewy Body Dementia Association, 1.3 million Americans have LBD. Like Alzheimer disease, LBD causes intellectual and physical deterioration due to progressive damage of brain cells. People diagnosed with LBD survive an average of about eight years according to the National Institute of Neurological Disorders and Stroke. People with late-stage LBD often lose their ability to communicate, care for themselves and even swallow.

The Evidence Is Clear

Lewy Body Dementia

I later learned what experts recommend about tube feeding and advanced dementia care. There is no evidence that supports the use of feeding tubes in advanced dementia and experts recommend that it not even be offered as a treatment option. Instead, the recommendation by the American Geriatrics Society is to provide food or liquid by hand-feeding, only to the extent that it is enjoyed by the person receiving care. There is no evidence of longer survival, less pneumonia, improved wound healing, weight gain or improved quality of life with the use of feeding tubes.

So how did nature take its course? After a week of being unresponsive from the fever, out of the blue my father opened his eyes, stared straight into mine, took a few more breaths and left this world. Its been almost four years now. And I am still at peace with my decision.

For more information on comfort care at end of life, read End of Life: Helping With Comfort and Care published by the National Institute on Aging.

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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 Can Healthcare Professionals Help At This Stage

Healthcare professionals can explain these changes so you understand what is happening.

Healthcare professionals can also take steps to reduce the persons pain or distress, often using medication.

If the person cant swallow, then medication can be provided through patches on the skin, small injections or syringe pumps that provide a steady flow of medication through a small needle under the persons skin. Speak to a GP or another health professional about this.

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The Final Stages Of Lewy Body Dementia

  • Death is typically a result of pneumonia or other infection, which the body cannot fight off even with the use of antibiotics. Pneumonia is typically caused by aspiration . Other infections can be localized , open pressure ulcers or wounds , skin injuries , or contractures , the use of tubes or catheters . Still other infections can be or systemic, called sepsis, an infection in the blood stream. Other causes of death include malnutrition and dehydration, complications following falls , pulmonary emboli , or heart failure.

Changes In Sleep Patterns

Lewy Bodies Dementia Phases

Those in the midst of moderate cognitive decline often present with changes in sleep patterns. Although nighttime sleep disturbances such as REM sleep behavior disorder may not be noticed by all loved ones , significant changes in sleeping habits are hard to miss. In stage four dementia, excessive sleepiness during the day and restlessness at night may occur.

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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.

What Are The 7 Stages Of Dementia

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.

If you or someone you know may be in the early stages of dementia, heres what you need to know about its seven stages:

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Movement Problems And Lewy Body Dementia

Some people with LBD may not experience significant movement problems for several years. Others may have them early on. At first, movement symptoms, such as a change in handwriting, may be very mild and easily overlooked. Movement problems may include:

  • Muscle rigidity or stiffness

Stage : Very Mild Changes No Dementiaquality Of Life: Little To No Impact

Understanding Lewy Body Dementia

You still might not notice any changes in your loved one. Youll see daily memory problems that look like a normal part of aging. You may see:

  • Some difficulty finding the right words.
  • The ability to make up for memory problems, such as substituting one word for another.
  • Normal functioning in the home, community, and workplace.

How You Can Help:

As with Stage 1, start to plan now. Use our tools to help your loved one document his or her values and priorities about the type of care wanted during the various stages of dementia.

You can also watch for new signs that you may not have seen before.

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Managing/living With Lewy Body Dementia

A person who is diagnosed with LBD must consult a neurologist who specializes in the treatment of dementia and other movement disorders. These doctors are often found in academic medical centers in large communities. However, a general neurologist can also be part of a medical team, which could be referred by your primary care physician.

There is no cure for LBD, but some symptoms temporarily respond to treatment.

1. Drug Therapy

Drug therapy is the mainstay of treatment for dementia with Lewy bodies and is much like that of Parkinson’s disease or Alzheimer’s disease.

  • These include acetylcholinesterase inhibitors, which help decrease confusion and mental instability, agitation and hallucinations. Atypical neuroleptic or antipsychotic drug is typically the first choice for agitation and hallucinations. It is important to treat these symptoms because they can result in accidents, injuriesor unsafe behavior. However, standard antipsychotic drugs are not recommended because many people with LBD may be extremely sensitive to them.
  • Other drugs that are widely used to relieve symptoms include antidepressants like selective serotonin reuptake inhibitors , monoamine oxidase-B inhibitor , and tricyclic antidepressants. In older people, combining these drugs is not usually recommended to avoid severe side effects.
  • Some research suggests the use of vitamin E to slow the progression of dementia in Alzheimer’s disease, but there is still no proof that this antioxidant works in LBD.

Five Approximate Phases Of Lewy Body Dementia

This post is about five phases of Lewy Body Dementia, according to a group of caregiver spouses.

Some members of the LBD_caringspouses Yahoo!Groups list have been working on the LBD Approximate Phases for a year now. I just received from Sue Lewis this final version of the Phases. This caregivers view of the five phases of LBD is a worthwhile document, especially for those new to the world of LBD. Theyve been working on this list on and off for so long that, at this point, they are not inviting your suggestions on how to modify the document. But they welcome any general comments ! You can send comments to me and Ill pass them on .


LBD APPROXIMATE PHASES AS SEEN BY CARING SPOUSESAugust 2007Facilitated by Sue Lewis of West Virginia, edited by June Christensen, Kansas


ADL: Activities of Daily Living dressing/bathing/ feeding oneselfBP: Blood PressureDME: Durable Medical Equipmentwheel chair, shower chairDPOA: Durable Power of AttorneyLBD: Lewy Body Dementia

  • May accuse spouse of infidelity, aggression
  • Able to engage independently in leisure activities
  • Handwriting is affected
  • Impaired ability to handle financial responsibilities · Still may be able to work but driving skills often compromised


  • Ambulates/transfers without assistance but increased risk for falls/requires walker
  • Leaning to one side
  • Possible fainting
  • May be able to administer own medications
  • Able to follow content of most conversations
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    How Do I Take Care Of Someone With Lewy Body Dementia

    If you care for someone who has been diagnosed with Lewy body dementia , its important to learn about the condition and seek professional guidance to help care for them at home. Understanding LBD can help you cope with everyday challenges.

    You may need to make changes to your home to make everyday life easier for them. For example, it helps to have a bright, cheerful and familiar environment. Its also important to make sure your home is safe and clear of any obstacles that could cause falls.

    Your loved ones healthcare team can help guide you with these changes.

    As insight and judgment skills decline in people with LBD, you may need to appoint someone else to oversee their finances. Before their decline in mental function is severe, its also important to clarify their wishes about care and financial and legal arrangements.


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