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Is Lewy Body Dementia Fatal

Stage Two: Very Mild Cognitive Decline

Lewy Body Dementia: What you need to know

Stage two may bring subtle changes in the individual, such as mild forgetfulness. These instances may include forgetting names or having trouble locating familiar objects. In the second stage of dementia, its difficult or impossible to notice these minor symptoms, and a diagnosis is not yet able to be reached.

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. .

Building A Lewy Body Dementia Care Team

After receiving a diagnosis, a person with LBD may benefit from seeing a neurologist who specializes in dementia and/or movement disorders. Your primary doctor can work with other professionals to follow your treatment plan. Depending on an individual’s particular symptoms, physical, speech, and occupational therapists, as well as mental health and palliative care specialists, can be helpful.

Support groups are another valuable resource for people with LBD and their caregivers. Sharing experiences and tips with others in the same situation can help people find practical solutions to day-to-day challenges and get emotional and social support.

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How Is Lewy Body Dementia Diagnosed

There are no medical tests that can diagnose Lewy body dementia with 100% accuracy. Specialists, including neurologists, geriatric psychiatrists, neuropsychologists and geriatricians, make the diagnosis of probable LBD based on the combined results of tests and patient symptoms.

Your healthcare provider will perform a thorough neurological and physical examination. You or your loved one will also complete mental status and neuropsychological tests. These tests check thinking abilities, including memory, word-finding, attention and visual-spatial skills. Your doctor will ask you and your family about your mental status and the history of your symptoms. Be sure to tell your healthcare provider of any physical, cognitive, memory, emotional, behavioral, movement, sleep or physical changes you or your loved one is having. Also, tell your healthcare provider about any of your current medications, supplements, vitamins, herbal products and frequently used over-the-counter products. These will be reviewed to see if they might be a cause of your or your loved ones symptoms.

Depending on your symptoms, your doctor may also test your blood. If your doctor needs more information, brain imaging studies may be performed.

If you have cognitive deficiency severe enough to impair daily life in the presence of any following clinical features, your doctor may suspect diagnosis of LBD:

Approximate Lewy Body Dementia Phases Symptoms And Considerations

Thoughts on how to beat a fatal disease
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
  • Hallucinations
  • Vision affected
  • Hearing affected
  • Speech difficulty
  • Physical coordination diminished
  • Cog-wheeling
  • 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

Strength to all!

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Treatment Of Behavior And Mood Problems In Lewy Body Dementia

Behavioral and mood problems in people with LBD can arise from hallucinations, delusions, pain, illness, stress, or anxiety. They may also be the result of frustration, fear, or feeling overwhelmed. The person may resist care or lash out verbally or physically.

Medications are appropriate if the behavior interferes with the person’s care or the safety of the person or others. If medication is used, then the lowest possible dose for the shortest period of time is recommended.

The first step is to visit a doctor to see if a medical condition unrelated to LBD is causing the problem. Injuries, fever, urinary tract or pulmonary infections, pressure ulcers , and constipation can worsen behavioral problems and increase confusion.

Certain medications, such as anticholinergics and antihistamines may also cause behavioral problems. For example, some medications for sleep problems, pain, bladder control, and LBD-related movement symptoms can cause confusion, agitation, hallucinations, and delusions. Similarly, some anti-anxiety medicines can actually increase anxiety in people with LBD. Review your medications with your doctor to determine if any changes are needed.

Antidepressants can be used to treat depression and anxiety, which are common in LBD. Many of them are often well tolerated by people with LBD.

Are There Other Symptoms Of Lewy Body Dementia

LBD may also lead to issues like constipation, fainting, loss of a sense of smell or changes in body temperature. In addition, researchers predict that about 17 percent of people with LBD have Capgras syndrome. Capgras syndrome occurs when someone mistakes their caregiver or loved one for an imposter.

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What Are The Risk Factors For Lewy Body Dementia

There are only a few Lewy body dementia risk factors. Growing older is the main one. The disease typically develops after age 50. There have been cases of LBD in younger people, although this is rare. Other risk factors include being male and having a family history of LBD or Parkinsons disease. LBD occurs slightly more frequently in men compared to women. And while most people who get it have no family history, the risk is higher if they do.

Dementia Affects Brain Areas Associated With Swallowing

Lewy body dementia and its rapid decline

Inability to swallow food is termed as dysphagia. The prevalence of dysphagia among elderly can be as high as 40 percent. This percentage is even higher among people with dementia .

But why is that?

Different types of dementia eventually lead to the shrinkage of the parts of the brain that coordinate swallowing. Consequently, the patients find it extremely hard to swallow as their disease progresses.

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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.

Common Symptoms Of Lewy Body Dementia

The most common symptom of LBD is progressive deficits in attention and executive functions, such as planning and processing information. Additional core features include recurrent visual hallucinations and fluctuations in thinking and alertness. These variations can change day to day or throughout the day. This can lead to episodes of ,, vacant staring, and disorganized speech.

Other LBD symptoms and features include:

  • Delusions and hallucinations involving touch, smell or hearing

  • Difficulty interpreting visual and spatial information

  • Loss of autonomic body function control leading to such problems as , , falls, , and bowel or bladder incontinence

  • Memory loss that becomes more noticeable later in the disease and is not as prominent as in Alzheimers disease

  • Movement problems, including tremors, rigid muscles, stiffness, slowness, balance problems, hunched posture, and or shuffling walk

  • REM sleep behavior disorder, which causes people to act out physically, and sometimes violently, in their dreams

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Signs And Stages Of Dementia

Early Signs

In the early stages of dementia, subtle signs begin to present themselves. The person might lose their keys more often, forget directions when driving, or show mood swings. It can often be overlooked and unnoticed as simple ditziness or having an off day.

It can be hard to diagnose dementia in the earlier stages. According to the Global Deterioration Scale , dementia experts express the need for updated testing as its much better for the individual, caregivers, and family members to catch dementia earlier on. It can be confusing to pinpoint the onset of dementia as it often occurs with co-existing conditions, such as a stroke or physical disease.

Top traits of the early phase of dementia include:

  • Confusion when trying to arrange difficult thoughts or tasks

Mid -Stage

As dementia progresses, the middle stage shows more severe signs of the beginning stage. The person will likely begin forgetting peoples names, faces, and their relationship to them. This relationship memory gap can come and go at different times, depending on the day.

They may also get easily lost in places like their local grocery store, nursing home, or even their own house. Communication can become an issue as they struggle to find the right words to express what they want to say. Major behavioral changes can occur, such as an introvert becoming suddenly extroverted and risk-seeking, or a nurturing friend becoming hostile toward peers.

Characteristics of mid-stage dementia:

What Complications Are Associated With Medications Used To Treat Lewy Body Dementia

PPT

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.

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Lack Of Knowledge Regarding What To Expect

Lack of information about DLB throughout disease duration affected EOL experiences.

When we first got the diagnosis of DLB, it was kind of like heres your diagnosis. And at that point, we were kind of on our own to figure out what that meant.

Multiple participants reported that physicians never discussed that DLB can be terminal.

Where I figured out that she was gonna die is from reading all the material I could get. But the doctor, I dont think, ever said she is gonna die. And I think thats important for this person to know I think the doctor needs to be very specific with the caretaker. Now, the patient may not wanna hear it.

Probably at least addressing and saying that, you know, this is terminal, and these are the types of things that we have to talk about or think about. And that never happened I think that if that had happened, maybe we would have been able to get hospice sooner.

Participants commonly self-educated about DLB and EOL by accessing internet resources including the LBDA, hospice sites, and Facebook caregiver groups. Many caregivers read books about dementia caregiving and hospice print materials.

Risk Factors For Oxygen Deprivation

Cerebral hypoxia has a variety of potential causesâanything that interferes with the bodys ability to process and distribute oxygen could lead to deprivation in the brain. This could include:

  • Severe asthma attacks
  • Chronic smoke inhalation
  • Crushing of the trachea

Any situation in which you are unable to breathe normally can lead to cerebral hypoxia and eventual brain damage, which in turn can increase your risk for developing a form of dementia.

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What Are The Potential Complications Of Lewy Body Dementia

Lewy body dementia is a progressive and irreversible disease. As the disease worsens, can become severe and behavior can become aggressive. Depression can also develop. Worsening motor symptoms can lead to falls and other injuries. Eventually, LBD is fatal. The average time from diagnosis to death ranges from 5 to 8 years. However, it can progress as quickly as 2 years or last as long as 20 years. How fast the disease advances and how long it lasts depends on a persons age at diagnosis, their overall health, and the severity of symptoms.

Coping With A Diagnosis

Living with Lewy Body Dementia – Mayo Clinic

Being diagnosed with dementia can be an overwhelming experience. While there is no cure at present for LBD, or any medications aimed at specifically treating LBD, doctors are able to treat many of its symptoms. There are also a number of self-help strategies that can help improve symptoms.

If youve been diagnosed with LBD, its normal to feel many strong and painful emotions, including anger, fear, and uncertainty about the future.

Take time to adjust. As with any major life change, its important to give yourself time to adjust. Expect ups and downs as you do. You may feel that youve come to terms with your new situation for a while, and then suddenly feel overwhelmed by stress again.

Reach out for support. Living with Lewy body dementia is not easy, but there is help for this journey. The more support you have from family and friends, the better youll be able to cope with symptoms.

Talk to your loved ones about your wishes. Its never easy to talk about how you want your healthcare handled when youre unable to make decisions for yourself. But its important to let your loved one know what is important to you. Thinking about your choices today can improve your quality of life in the future and ease the burden on your family.

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.

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What Are Lewy Bodies

Dementia with lewy bodies is caused by lewy bodies, which are tiny deposits of a protein that build-up in the brains nerve cells, especially the areas that affect the memory, thought and movement. They were named after the German doctor that discovered them and are implicated in causing a form of dementia and Parkinsons disease.

Scientists dont fully understand the lewy body dementia pathophysiology however, the proteins are associated with low levels of neurotransmitters, which are the chemicals that carry messages between nerve cells. The loss of connection between the nerve cells eventually leads to cell death and progressively deteriorating symptoms. The specific signs and symptoms depend on the area of the brain that has been affected.

Treatment For Early Lbd Symptoms

Over time, the symptoms of Lewy body dementia become more pronounced or frequent. It is a progressive disease and there is no cure for either dementia with Lewy bodies or Parkinsons disease dementia. However, some of the symptoms may be treatable with medications and complementary therapies, such as pet therapy, music therapy, or art therapy.

Managing the symptoms can help reduce and other feelings that may accompany dementia. It can take some trial and error to find effective medications or therapies, but these treatments may help people with Lewy body dementia maintain their quality of life for longer.

If you are a caregiver for someone with Lewy body dementia, speak with your loved ones healthcare team and support groups for ideas on how to best manage dementia symptoms and cope with the challenges of caregiving.

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What Are The Differences Between Lewy Body Dementia Parkinson’s And Alzhemier’s

Despite shared symptoms, Lewy body dementia has key symptoms that differentiate itself from other similar disorders.

“People with LBD, unlike early Parkinson’s, will exhibit cognitive impairment, behavior issues and have fluctuations in alertness,” Loeb said, symptoms that are not as common in early Parkinson’s patients.

Meanwhile, LBD patients will more frequently face issues with “planning, judgment and visual perception,” as opposed to Alzheimer’s patients, who experience memory loss. They may also face issues with their autonomic nervous system, which influences blood pressure and incontinence.

Alzheimers Disease Or Dementia

About LBD

Many people wonder what the difference is between Alzheimers disease and dementia.

Dementia is an overall term for a particular group of symptoms. The characteristic symptoms of dementia are difficulties with memory, language, problem-solving and other thinking skills that affect a persons ability to perform everyday activities. Dementia has many causes . Alzheimers disease is the most common cause of dementia.

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