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.
How Can A Live
If your loved ones symptoms are fairly mild, an in-home carers role may be mainly to provide companion care and to ensure theyre safe and the environment is kept free of hazards. Theyll help with or take over the cooking, cleaning, laundry, and shopping for your loved one, as well as any other domestic tasks that are needed in the day-to-day running of the home.
Because dementia with Lewy bodies is a progressive disease, the carers role will change according to the older persons needs and can include assistance with feeding, washing and bathing and dressing.
The level of support will be tailored to the persons needs, and the carer will try to support your loved one to retain as much independence as they can.
Your loved ones live-in carer will have experience in intervening tactfully and with sensitivity so that your relative finds it easier to accept assistance. If mobility is an issue, a live-in carer will be on hand to help with sitting, standing and moving.
If transfers from bed to chair or into the bath are needed, these can be safely assisted. A live-in carer will also be able to take your loved one out in their wheelchair if they use one, meaning that theyre not confined to their house.
With professional live-in care, youll have the peace of mind of knowing your loved one is being looked after by someone familiar who theyre comfortable with and who will be alert to changes in their condition and act accordingly.
When To Start Caring For A Person With Lewy Body Dementia
For you, the Caregivers Guide to Lewy Body Dementia would be best. I started caring for my mother in law a little over 2 years ago. She had been sick for years before we knew so we started caring for her when she was already pretty far gone.
Lewy body dementia, in particular, increases the likelihood of delusions and hallucinations, 2 although they can occur in all types of dementia. If youre a caregiver for someone who has dementia, it can be helpful to remind yourself that their emotions are being affected by the disease.
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How Long Do People With Lewy Body Dementia Live
Research suggests most people live five to eight years with LBD. Host your own VIRTUAL fundraising event from the comfort of your own home! Connect with friends and family all over the map and join together to support one cause. Give back to the individuals and families who are battling with Lewy body dementia.
How Can A Person Diagnosed With Lewy Body Dementia Live The Best Life Possible
First, its important to interact with others as much as possible. Plus exercise and eat a healthy diet to keep mind and body as strong as possible.
Use music and aromatherapy to reduce anxiety and improve mood.
Other things you can do involve seeking the help and assistance of others. Therapists can improve the quality of life of someone living with Lewy body dementia. Therapists include:
- Physical therapists: These therapists can help improve physical strength, flexibility, balance and walking mechanics.
- Occupational therapists: These therapists can teach skills and methods to maintain your ability to perform activities of everyday life and remain independent.
- Speech therapists: These therapists can improve swallowing difficulties and ability to speak more clearly.
Persons with Lewy body dementia and their families can also benefit from counseling with a psychotherapist. This counselor teaches how to manage emotional and behavioral problems. Finally, joining a support group there are support groups for persons with LBD and for the caregivers of persons with LBD. Support groups help solve day-to-day problems and frustrations through sharing similar experiences. See the resource section of this article for links to support groups.
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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.
What You Need To Know
- Lewy body dementia is a form of progressive dementia that affects a persons ability to think, reason, and process information.
- Diagnosing Lewy body dementia can be challenging an estimated 1.4 million Americans are living with the disease.
- LBD has three features that distinguish it from other forms of dementia:
- Fluctuating effects on mental functioning, particularly alertness and attention, which may resemble delirium
- Recurrent visual hallucinations
- Parkinson-like movement symptoms, such as rigidity and lack of spontaneous movement.
Lewy bodies are clumps of abnormal protein particles that, for reasons that are not fully understood, accumulate in the brain. These deposits cause a form of dementia called Lewy body dementia, or LBD which is what the late actor and comedian Robin Williams suffered from.
LBD is not the same as Parkinsons, but the two are closely related: LBD causes some or all of the motor symptoms of Parkinsons. More than 1 million people in the U.S. are affected by Lewy body dementia, according to the Lewy Body Dementia Association.
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Stage Seven: Very Severe Cognitive Decline
Stage seven typically lasts for 1.5 to 2.5 years and is characterized by very severe cognitive decline. Patients in stage seven lose their ability to communicate, and are often unable to walk. Individuals in late stage dementia require extensive assistance with lifes activities, and often need round the clock support.
Dementia affects approximately 5 million Americans each year. Lewy Body Dementia comprises approximately 1.4 million cases within this figure, and is often misdiagnosed. If youd like to learn more about Lewy Body Dementia or seek support, please visit us online at lewybodyresourcecenter.org or reach out to our helpline at .
How To Care For Dementia With Lewy Bodies
Post-diagnosis its important to seek the necessary support there are various ways to do this. There will be some practical decisions to be made, but there are also ways to find support and be supportive of loved ones following a diagnosis.
When considering care options, its important at these early stages to ensure your loved ones wishes are noted if they wish to receive care at home, this needs to be documented and vocalised by family during the process of arranging care.
Lasting power of attorney
Lasting power of attorney is a legal statement that allows a family member or other named person the ability to make decisions about their loved ones finances and care needs on their behalf. For progressive conditions such as dementia with Lewy bodies it is advised that LPA be put in place.
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Stages And Progression Of Lewy Body Dementia
Claudia Chaves, MD, is board-certified in cerebrovascular disease and neurology with a subspecialty certification in vascular neurology.
If you or someone you know has recently been diagnosed with Lewy body dementia, you might be wondering what to expect as the disease progresses. Is there a fairly typical progression like Alzheimer’s disease where it begins in early stages that are fairly uniform, then moves to middle stages and then to late stages? In Lewy body dementia, the answer is a bit more complicated.
The Seven Stages Of Lewy Body Dementia
I am excited to have found a new LBD resource. Unfortunately my finding led to another finding that I am probably a Stage 4 Lewy patient on a 7-part scale.
My new resource is Norma Loeb, and she runs the Lewy Body Dementia Resource Center.
She contacted me recently after hearing the K-Pod podcast where I was interviewed by Kerri Kasem, daughter of Top-40 radio personality Casey Kasem who they believe died of LBD.
So glad she contacted me because the first thing I noticed going to her website was a post listing the seven stages of Lewy body. I have heard people talk of different stages. but I dont believe I knew there were seven and I havent seen anything breaking that down in simple language like this.
I would classify myself in Stage 3 at best, but most probably Stage 4 based on this scale. Yikes. Although I believe I was diagnosed early. It has been nearly three years and it appears I am moving up the scale rather quickly. Makes it a little more serious when I put it like that.
I need to stretch my stages out a little longer, I think.
Without further ado, here is Norma Loebs post:
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.
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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.
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.
Parkinsons Alzheimers And Lewy Body Dementia
Since Lewy body dementia is commonly misdiagnosed for both Parkinsons and Alzheimers, it is helpful to understand how these diseases overlap.
|Overlapping symptoms of Parkinsons, Alzheimers, and Lewy body dementia
|Parkinsons and Lewy body dementia
|Alzheimers and Lewy body dementia
|Some of the motor symptoms found in bothParkinsons and Lewy body patients include:
|Some of the cognitive symptoms found in bothAlzheimers and Lewy bodys patients include:
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.
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What Causes Dementia With Lewy Bodies
The Lewy bodies that collect in the brain stem interfere with dopamine production. Dopamine is a neurotransmitter involved in transmissions around the brain and body.
This interference causes symptoms common in Parkinsons disease such as shaking, tremors, mobility problems and speech impairment. The protein deposits can also spread into the cerebral cortex, disrupting and depleting acetylcholine which affects perception, thinking, and behaviour.
Managing Sleep Disorders In Lewy Body Dementia
Sleep problems may increase confusion and behavioral problems in people with LBD and add to a caregiver’s burden. A physician can order a sleep study to identify any underlying sleep disorders such as sleep apnea, restless leg syndrome, and REM sleep behavior disorder.
REM sleep behavior disorder, a common LBD symptom, involves acting out one’s dreams, leading to lost sleep and even injuries to individuals and their sleep partners. Clonazepam, a drug used to control seizures and relieve panic attacks, is often effective for the disorder at very low dosages. However, it can have side effects such as dizziness, unsteadiness, and problems with thinking. Melatonin, a naturally occurring hormone used to treat insomnia, may also offer some benefit when taken alone or with clonazepam.
Excessive daytime sleepiness is also common in LBD. If it is severe, a sleep specialist may prescribe a stimulant to help the person stay awake during the day.
Some people with LBD have difficulty falling asleep. If trouble sleeping at night persists, a physician may recommend a prescription medication. It is important to note that treating insomnia and other sleep problems in people with LBD has not been extensively studied, and that treatments may worsen daytime sleepiness and should be used with caution. Sleep problems can also be addressed by avoiding lengthy naps, increasing daytime exercise, and avoiding caffeine, alcohol, and chocolate late in the day.
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The Progression And Stages Of Dementia
Dementia is progressive. This means symptoms may be relatively mild at first but they get worse with time. Dementia affects everyone differently, however it can be helpful to think of dementia progressing in ‘three stages’.
The progression and stages of dementia
Struggling With Lewy Body Dementia
Lewy Body Dementia symptoms may not be noticeable at first but will become more prominent over time. For instance, a person in the early stages of Lewy Body Dementia may have a clear memory one day, but the next day become confused and forgetful.
As the disease progresses, however, a person can experience problems such as:
- Loss of balance
- Having trouble walking, moving arms)
- Difficulties sleeping
Lewy Body Dementia can also cause personality changes. For example, people who were once organized may become disorganized and irresponsible.
As the disease progresses, Lewy Body Dementia will make it difficult for people to function normally in their home.
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Lewy Body Dementia Stages
With a little bit of information about Lewy body dementia, its now time to jump into the stages of the disease. Like many other dementia types out there, the phases are not cast in stone.
This dementia type also tends to develop at a very slow pace.
Different people may have different experiences.
Below we will tackle three stages that a person with Lewy body dementia may go through.
Symptoms Of Dementia With Lewy Bodies
People with dementia with Lewy bodies may have:
- hallucinations seeing, hearing or smelling things that are not there
- problems with understanding, thinking, memory and judgement this is similar to Alzheimer’s disease, although memory may be less affected in people with dementia with Lewy bodies
- confusion or sleepiness this can change over minutes or hours
- slow movement, stiff limbs and tremors
- disturbed sleep, often with violent movements and shouting out
- fainting spells, unsteadiness and falls
These problems can make daily activities increasingly difficult and someone with the condition may eventually be unable to look after themselves.
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