What’s Lewy Body Dementia

How Is Lewy Body Dementia Treated Is There A Cure

There is no cure for Lewy body dementia . Medications and nonmedical therapies, like physical, occupational and speech therapies, manage symptoms as much as possible.

Medications called cholinesterase inhibitors help manage the cognitive symptoms of LBD. Memantine may also be helpful. Symptoms of Parkinsonism, like tremors, are usually treated with levodopa, a drug commonly used to treat Parkinsons disease.

You or your loved one may also benefit from treatments like physical therapy or speech therapy. These treatments help retain physical function and improve muscle strength.

Outlook For Dementia With Lewy Bodies

How quickly dementia with Lewy bodies gets worse varies from person to person.

Home-based help will usually be needed, and some people will eventually need care in a nursing home.

The average survival time after diagnosis is similar to that of Alzheimer’s disease around 6 to 12 years. But this is highly variable and some people live much longer than this.

If you or a loved one has been diagnosed with dementia, remember that you’re not alone. The NHS and social services, as well as voluntary organisations, can provide advice and support for you and your family.

How Does Lewy Body Dementia Differ From Alzheimers Disease

Most are familiar with Alzheimerâs disease, but chances are, if you ask anyone on the street what Lewy body dementia is, they wonât have a clue. The prevalence of dementia with Lewy bodies is unknown, but dementia experts believe that LBD accounts for between 10% and 15% of all dementia cases.

As with other forms of dementia, LBD is a progressive brain disorder. It occurs when abnormal deposits of a protein called alpha-synuclein build up in the areas of the brain responsible for regulating behavior, cognition and movement. These deposits are called Lewy bodies. According to the Michael J. Fox Foundation for Parkinsonâs Research, there is compelling evidence from recent studies that alpha-synuclein may also play a role in the development of both familial and sporadic cases of Parkinson’s disease. In fact, LBD shares symptoms with both Alzheimerâs and Parkinsonâs disease.

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Make Plans For The End Of Life

Advance care planning is an important part of end of life care. Planning ahead can improve the quality of life of the person with LBD and their caregivers and help ensure that the person with LBD has input into health care and legal and financial decisions. Having these conversations early allows the person to actively participate in the decision-making process and express their personal wishes.

For health care providers and caregivers who donât have experience with LBD, it can be challenging to recognize the end of life. LBD is unpredictable. It can be hard to know when the person will die, and the process may be shorter or longer than expected, which may make coping more difficult. Staying in touch with the personâs physician can help you decide when to pursue end of life care and what to expect towards the end of life. Some physicians may be unlikely to initiate end of life conversations. It is important for caregivers to take an active role during appointments and come prepared.

Spending time and doing simple activities together towards the end of life may help ease the process. Listening to music, spending time outdoors, or watching a favorite television show are just a few examples of activities you can do. Some family members find a lot of value in simply holding their loved oneâs hand and talking to them in their last few days.

What Can I Expect If I Or My Loved One Have A Diagnosis Of Lewy Body Dementia

Each persons experience with Lewy body dementia is unique to them. How slowly or quickly the disease progresses is impossible to know, but may be influenced by your general health and any existing diseases you may have. Because LBD is a progressive disease, difficulties with mind and body functions get worse over time. Currently, there is no known way to stop the progression of the disease. After diagnosis, most people with LBD live between five and seven years. Some people with LBD live up to 20 years after their diagnosis.

However, theres always hope. Research on LBD, dementia with lewy bodies, Alzheimers disease, Parkinsons disease with dementia are ongoing. New medications are being developed and new approaches to treatment are being investigated.

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Caring For Someone With Lewy Body Dementia

Caring for someone with LBD, or any form of dementia, is hugely challenging. Just as LBD can impact every aspect of a person, caring for someone with the disease can impact every aspect of your daily life. Youll likely face tests of stamina, problem solving, and resiliency. However, your caregiving journey can also be an intensely rewarding experience as long as you take care of yourself and get the support that you need.

Treating Movement Symptoms In Lewy Body Dementia

LBD-related movement symptoms may be treated with medications used for Parkinson’s disease, called carbidopa-levodopa. These drugs can help make it easier to walk, get out of bed, and move around. However, they cannot stop or reverse the disease itself. Side effects of this medication can include hallucinations and other psychiatric or behavioral problems. Because of this risk, physicians may recommend not treating mild movement symptoms with medication. Other Parkinson’s medications are less commonly used in people with LBD due to a higher frequency of side effects.

People with LBD may benefit from physical therapy and exercise. Talk with your doctor about what physical activities are best.

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The Painful Truth About Lewy Body Dementia

Dawn Hamilton, a caregiver whose husband John developed LBD, graciously shared her personal story of living with someone from LBD. Caregiver perspectives are a valuable way to help others who are experiencing this difficult disease.;

In this video, Dawn shares the following:

• Actual footage of her husband John’s painful hallucinations.
• Her thoughts and feelings about the difficulty of convincing doctors that something was not right.
• Her advice about what she learned along the way.
• How laughter helped her family get through some of the difficult days.

Diagnosing Lewy Body Dementia

Distinguishing LBD from other forms of dementia can be difficult. Early, accurate diagnosis is critical because some medications may be better suited for people with LBD than Alzheimers and some medications can be less favorable, even dangerous, for people with LBD.;

Here are several common symptoms of LBD:

• Impaired thinking
• Changes in bodily functions like bladder and bowel control, temperature regulation, and heart rhythm

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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

• Restless leg syndrome

What Other Things Help

There are various ways to help a person with DLB. Speech therapy may help improve communication between people with DLB and others. Physical therapy may help strengthen and stretch stiff muscles and help to prevent falls.

Research has shown that;physical exercise helps to enhance brain health and improves mood and general fitness. A balanced diet, enough;sleep, and limited alcohol intake are other important ways to promote good brain health. Other illnesses that affect the brain, such as diabetes, high blood pressure, and high cholesterol, should also be treated if present.

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Understand Behavioral Changes 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.

Hallucinations and delusions are among the biggest challenges for LBD caregivers. The person with LBD may not understand or accept that the hallucinations are not real and may become agitated or anxious. Instead of arguing, caregivers can help by responding to the fears expressed. By tuning in to the person’s emotions, caregivers can offer empathy and concern, maintain the person’s dignity, and limit further tension.

Caregivers can try a variety of strategies to handle such challenging behaviors. Some behavioral problems can be managed by making changes in the person’s environment and/or treating medical conditions. Other problems may require medication.

Itâs also common for people with LBD to have difficulty falling asleep. Certain sleep problems can be addressed without medications. Increasing daytime exercise or activities and avoiding lengthy or frequent naps can promote better sleep. Avoiding alcohol, caffeine, or chocolate late in the day can help, too. Some over-the-counter medications can also affect sleep, so review all medications and supplements with a physician.

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.

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Never Underestimate The Power Of Your Presence And Support

At the same time, caregivers must also prioritize their health too especially since LBDs unique set of symptoms and steady decline can be physically demanding and emotionally challenging. So while your loved one with LBD needs care and support, don’t forget your own needs.

Remember to

• Ask for help when necessary
• Focus on healthy lifestyle behaviors that will help you feel your best
• Join a caregiver support group.;

All of these things can help you provide the best care without sacrificing your own health and wellness.

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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How Is Lewy Body Dementia Treated

There arent any drugs that may stop or reverse Lewy body dementia (LBD, and research is still ongoing. Medications to relieve symptoms include:

• Acetyl cholinesterase inhibitors: These work by increasing the levels of a chemical called acetylcholine in the brain, which improve the ability of the brain cells to send signals to each other

Lewy Body Dementia Canada

Learn to live best with LBD

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Im no fan of applying the concept of stages or phases to predict the trajectory of a person with Lewy Body Dementia . Ive witnessed;far, far too much variation. Precipitous drops. Miraculous recoveries. Dizzying variations. I consider it a continuum. And not a linear one.

So I never apply stages, phases or expectations. The only one I knew for certain, was the very end. The rest was a wild ride indeed.

Lewy Body Dementia life expectancy is impossible to predict.

But theres a constant desire by people desperate for answers, for a clue to where theyre going, whats next, how to plan or just get by. And for that reason, I present the best one Ive found.

I defer to the exceptional work of an exceptionally resourceful and committed duo,;Sue Lewis and June Christensen, who exhaustively;compiled;the document based on input;from;approximately 300 members of;an online group called Lewy Body Caring Spouses;in 2006.

In my view, this is the best description of a;possible;sequence, categorized into five groupings of symptoms, which will always have a great deal of overlap.

Keep in mind these categories and their contents are potential. Personally, I shy away from the phrase stage and use something like earlier or later in the sequence of symptoms, which can fluctuate shockingly. This is a subtle, but important difference to me.

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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.

What Is Lewy Body Dementia: A Caregivers Guide

Lewy body dementia is one of the most common forms of dementia. However, it is frequently misdiagnosed as more commonly known illnesses, such as Alzheimer’s disease or schizophrenia.

Caring for someone with dementia can be scary, confusing, and overwhelming. If you feel like youre in the dark, youre not alone.

Below, we take a closer look at the symptoms of LBD and unpack what caregivers should know about this complex disease.

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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.

Coping With A Diagnosis

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 Is Lewy Body Dementia Causes Symptoms And Treatments

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• Lewy body dementia research

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.