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Is Lewy Body Dementia Terminal

What Does Best Practice Look Like Introducing The Priorities For Care Of The Dying Person

Potential Breakthrough For Patients Suffering With Lewy Body Dementia

There are five priorities:

  • Recognise: The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the persons needs and wishes, and these are regularly reviewed and decisions revised accordingly. Always consider reversible causes, for example, infection, dehydration, hypercalcaemia.
  • Communicate: Sensitive communication takes place between staff and the dying person, and those identified as important to them.
  • Involve: The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.
  • Support: The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.
  • Plan & Do: An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion.

Diagnosis Of Dementia With Lewy Bodies And Parkinson Disease Dementia

Doctors base the diagnosis of dementia with Lewy bodies on its characteristic symptoms. Dementia with Lewy bodies is likely if mental function fluctuates in people who have visual hallucinations and muscle and movement symptoms similar to those caused by Parkinson disease.

Computed tomography and/or magnetic resonance imaging may be done to rule out other causes of dementia.

Other imaging tests may help doctors diagnose dementia with Lewy bodies. They include positron emission tomography and single-photon emission CT . These tests use a substance containing a radioactive tracer that, when injected into a vein, collects in a particular organ. A gamma-ray camera attached to a computer detects the radioactivity, and the computer produces an image of the organ being examined.

However, even after testing, distinguishing dementia with Lewy bodies from Parkinson disease dementia can be difficult because symptoms are similar:

  • Generally, dementia with Lewy bodies is more likely if movement and muscle problems develop at the same time or shortly after mental function starts to decline.

  • Parkinson disease dementia is more likely if mental decline occurs years after muscle and movement problems develop in people with Parkinson disease and if muscle and movement symptoms are more severe than mental impairment.

Physical Care Practices For Lewy Body Dementia

Hospice, in pursuit of providing optimal comfort for terminally-ill patients, focuses on minimizing physical discomfort through the use of:

  • Physical therapy that focuses on improving flexibility, strength, and cardiovascular health

  • Specialized medication designed to reduce pain and reduce the severity of Lewy body dementia symptoms

  • Speech therapies to help curb the erosion of speech function, voice volume, and rebuild muscular strength in the jaw, throat, and mouth, to aid in swallowing and talking

  • Assistance with activities of daily living, such as dressing, eating, and toileting

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Approaching End Of Life

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.

Offer Touch And Human Contact


Sit with the person, hold their hand and talk to them as if they can still hear you. Hearing can be the last sense that a person loses at death. This shows that you care and shows respect. If family are at their loved ones bedside, stay with the person when the relative has a break, and again hold the persons hand.

The care team would need to plan how you can provide this kind of one-to-one support.

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Understanding Lewy Body Dementia

Lewy body dementia consists of two different conditions: dementia with Lewy bodies and Parkinson’s disease dementia. The two share many of the same symptoms and may often be considered to be the same.

However, one significant factor in;how Lewy body dementia progresses is related to which disease is actually present. In Parkinson’s disease dementia, the physical challenges are usually evident first, while in dementia with Lewy bodies, cognitive changes may appear earlier than, about the same time, or shortly after,;the physical changes develop.

Psychosocial Spiritual And Emotional Care For Lewy Body Dementia

A terminal Lewy body dementia diagnosis is often a heavy blow to a patients mental and emotional wellness. Hospice recognizes the impact of a terminal diagnosis upon not only the patient, but the patients family and friends as well. The hospice care team provides:

  • One-on-one psychosocial therapy between a trained specialist and the patient to help the patient understand and cope with the difficult emotions that accompany a terminal illness

  • Family therapy sessions to help family members understand and process the the end-of-life journey, how they can support the patient, and the caregiver who is commonly a member of the patients family

  • Music, aroma, and pet therapies that can help improve mood, promote movement, and provide emotional healing

  • Chaplains, a key part of the hospice team, provide spiritual counseling and help patients find peace and reconciliation with family and friends at the end of life

  • Bereavement counselors can help patients understand and cope with the anticipatory grief that commonly accompanies a terminal diagnosis, and can help families process their grief after the patients death, for up to 13 months after the death

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Is Lewy Bodies Dementia Terminal

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How Is Parkinsons Disease Dementia Diagnosed

Lewy body dementia and its rapid decline

No single test can diagnose Parkinsons disease dementia. Instead, doctors rely on a series or combination of tests and indicators.

Your neurologist will likely diagnose you with Parkinsons and then track your progression. They may monitor you for signs of dementia. As you get older, your risk for Parkinsons dementia increases.

Your doctor is more likely to conduct regular testing to monitor your cognitive functions, memory recall, and mental health.

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Transforming Mental Cognitive And Physical Health

The symptoms may first hinder a persons ability to work, Taylor said. Then they can disrupt their ability to drive; manage their affairs and health; be socially active; dress themselves; and shower. A person might also become unable to control involuntary behaviors, Galvin said, resulting in constipation, drooling, low blood pressure or the inability to control urine or bowel movements.

A persons inability to visually perceive the spatial relationships of objects can lead to car accidents or injuries. People with LBD can experience anxiety, depression and;REM sleep disorder; in which people lose the muscle paralysis that normally occurs during deep stages of sleep and physically act out their dreams. Once a person is finally diagnosed, the life expectancy is about four to five years, Vox said.

Theyre losing the essence of who they are slowly over time, Taylor said. Thats a journey that is a very difficult one.

Research to improve diagnoses and treatments is underway, but there are currently no treatments for Lewy body dementia specifically. Most patients are treated with medications for Alzheimers or Parkinsons disease, since the symptoms of LBD are similar. However, treating the various symptoms of LBD with medications not fine-tuned for the condition can be a real art and quickly fill up a patients medicine cabinet, Vox said.

Comparison Of The Features Of Palliative And Hospice Care

  • Pain relief and symptom control
  • Emotional support
  • Patient/family responsible for small co-payments

While there are no restrictions on who can receive palliative care, hospice care has some eligibility restrictions. The patients doctor and the hospices medical director must certify that the individual has a terminal illness and has six months or less to live if the illness is allowed to run its course. To receive Medicares hospice benefit the patient also must be eligible for Medicare Part A, agree to choose hospice care instead of regular Medicare benefits to treat the terminal illness, and receive care from a Medicare-approved hospice program.

Like palliative care, hospice care teams consist of specially-trained nurses, physicians, social workers, physical therapists, dieticians, and pharmacists. However, the hospice team will also usually include chaplains and volunteers. In addition, a home health aide may come to assist with bathing, dressing, or feeding. Most hospice care is provided in the patients home. However, there are hospice programs located in many assisted living and skilled nursing facilities as well as hospital-based and residential programs.

  • Physician services
  • Short-term inpatient care
  • Short-term respite care

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Tube Feeding Or No Tube Feeding That Is The Question

The biggest question I wrestled with when my father was at the end of his life was nutrition. He had already gone 3 days without food or drink. I thought perhaps if we used tube feeding or intravenous fluids it might strengthen his ability to recover. But the flip side of the coin kept staring me in the face. What was I saving him for?

People in the advanced stage of LBD are in a progressive state of physical decline. Certainly that was the case with Dad. Even if he recovered from the flu, hed never recover from advanced LBD. Like others with LBD, muscle weakness may affect his swallowing ability. This can lead to aspirating food or liquid, resulting in pneumonia, a common cause of death in advanced dementia. Even without problems with aspiration, hed probably succumb to pneumonia or heart failure after months of being bedridden. After conferring with those closest to him, I decided to leave my fathers fate in natures hands; either his fever would break, or he would begin the dying process.

How Lewy Body Dementia Gripped Robin Williams

Activation of ERK by synuclein

Hit by a vicious case, the actor said he wanted to reboot his brain

In the months before his death, Robin Williams;was besieged by;paranoia and so confused he couldnt remember his lines;while;filming a movie,;as his brain was ambushed;by what;doctors later identified;as an unusually severe case of;Lewy body dementia.

Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating?;the actors widow,;Susan Schneider Williams, wrote in a wrenching;editorial;published this week in the journal Neurology.

The title;of her piece:;The terrorist inside my husbands brain.

Susan Williams;addressed the editorial;to neurologists, writing that she hoped;husbands;story would help;you understand your patients along with their spouses and caregivers a little more.

Susan Williams has previously blamed;Lewy body dementia for her;husbands death by suicide in 2014. About;1.3;million Americans have the disease, which is;caused by protein deposits in the brain. Williams was diagnosed with Parkinsons disease a few months before he died; the telltale;signs of;Lewy body dementia in his brain were not discovered until an autopsy.

The;editorial chronicles Williamss desperation;as he sought to understand a bewildering array of symptoms that started with insomnia, constipation, and an impaired sense of smell and soon spiraled into extreme anxiety, tremors, and difficulty reasoning.

Nothing worked.

She added:;Do not give up.

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What Is Lewy Body Dementia And What Causes It

Lewy body dementia is a type of progressive dementia. According to Norma Loeb, the founder of the Lewy Body Dementia Resource Center, it is the second most common form of progressive dementia behind Alzheimer’s.

Excess deposits of the protein alpha-synuclein, known as Lewy bodies, clump up inside neurons, causing damage to certain parts of the brain and, as a result, a decline in cognition and movement.

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There are two forms of Lewy body dementia: Dementia with Lewy bodies and Parkinson’s disease dementia. The early warning signs of both are key: DLB takes place when people develop cognitive issues, including memory loss, while patients with Parkinson’s disease dementia initially develop movement issues such as muscle stiffness, gait and tremors.

Over time, their symptoms will become more and more similar. Other symptoms of LBD include depression, anxiety, sleep disorders, insomnia, and hallucinations. Patients often develop hallucinations of people or small animals, Loeb said.

Individuals with LBD may live anywhere between two to 20 years from diagnosis to death, according to the;National Institute of Neurological Disorders and Stroke.

Newfound Challenges For Patients And Families

Lewy body dementia can be a harrowing experience for both patients and their families.

Getting a diagnosis can be a matter of months- to yearslong doctor shopping, Galvin said.

Executive dysfunction can lead to behaviors that family members initially perceive as bad judgments. Delusions can make them frustrated and fearful.

As a caregiver, I think one of the challenges is recognizing that we cannot use the same skills and interpersonal dynamics that we came to rely on in our relationship with the person with LBD, Taylor said.

We have to develop new ones because you cannot reason with somebody who is having a hallucination or delusion. Sometimes you have to more step into their reality and empathize learn a new way to offer assistance without them feeling like theyre being treated like a child.

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Behaviors Seen In Parkinsons Disease Dementia

As dementia progresses, managing disorientation, confusion, agitation, and impulsivity can be a key component of care.

Some patients experience hallucinations or delusions as a complication of Parkinsons disease. These may be frightening and debilitating. Approximately 50 percent of those with the disease may experience them.

The best thing to do when giving care to someone experiencing hallucinations or delusions from Parkinsons disease dementia is to keep them calm and reduce their stress.

Take note of their symptoms and what they were doing before they exhibited signs of hallucinating and then let their doctor know.

This element of the disease can be particularly challenging for caregivers. Patients may become unable to care for themselves or be left alone.

Some ways to make caregiving easier include:

  • sticking to a normal routine whenever possible
  • being extra comforting after any medical procedures
  • limiting distractions
  • using curtains, nightlights, and clocks to help stick to a regular sleep schedule
  • remembering that the behaviors are a factor of the disease and not the person

Thoughts On Lewy Body Dementia Stages Or Phases

Family grateful for Lewy body dementia treatment | Ohio State Medical Center
  • Maggie
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    Happy to provide the kind words. Theyre authentic and legitimate, and so well deserved to everyone dealing with LBD, Mary. If theres anything that will make the biggest difference, its likely kindness: towards others, and at least equally important to ourselves. Strength to you! Timothy Hudson

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    This is such helpful information. I believe we are in the final stage as my Mother cannot walk or feed herself or even move herself in the bed or while sitting. She tries to speak but she doesnt make actual words and her appetite has great decreased and her meat is given to her after being mechanically Processed. She was officially diagnosed 2 years ago but I have known something is very wrong for at least the past 6 years. Such a horrible disease.

  • TImothy HudsonPost authorPermalink

    It is a horrible disease, indeed, Tina. Very sorry for how things have been going with your Mother, and I hope you are both able to be comforted by the love and connection you share. Shes fortunate to have such a compassionate, caring daughter, indeed.Strength to you!

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    I am so sorry to hear this. My mum is 88 and is now showing symptoms. My dad is 90 and they live in our annexe. I have not involved our General Practitioner doctor. Having read the above article I can now relate to many of the symptoms my mum has been displaying. I hope your mum goes to sleep peacefully. Stay strong and safe.

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    Getting Prepared For A Death

    Care staff need to know the persons wishes for their death: where they would prefer to be when they die, who should be present, how pain might be treated, and so on. A persons spiritual and cultural needs are important throughout their life, but may take on a particular significance at the end of their life. We can only support a person nearing death properly if we know this information and have recorded it accurately so they have the best possible, and personalised, end-of-life care

    Ensuring that a person is as physically comfortable as possible when they are dying also takes preparation. Is a hospital-style bed available, for example, if it is needed? Is a suitable mattress to hand? How can dignity best be maintained if all personal care is provided at a persons bedside? Does the persons room need to be altered in any way, for example fitting new lighting?

    Relatives also need to be prepared. For family, having a good relationship with care staff may be a critical part of the lead-in to this dying phase. You also need to know family members wishes at this time. For example, do they want to be present for the death if possible?


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