Tag: Those With LBD

The Benefits of Participating in LBD Research

Enrolling in an LBD research study requires some time and effort, but the benefits can be considerable – particularly for those who have been diagnosed with Lewy body dementia. If you are considering participation in an LBD study, here are some key advantages of your involvement:

You are in complete control

Medical professionals involved in clinical research – that is, a study involving people – have a duty to protect the rights, safety, and welfare of the study volunteers. Study participants have the right to withdraw from a study at any time and for any reason. As a study volunteer, your continued participation is always up to you.

You could be compensated

Every clinical research study is unique, but certain LBD studies pay volunteers to participate. In such cases, study participants and care partners could be paid for their time and travel expenses.

Get access to new treatments

Currently, there are no FDA-approved treatments for any symptoms of dementia with Lewy bodies (DLB). This is why finding new LBD treatments is the number one priority for LBD clinical research. Depending on the purpose of the study, you may receive access to experimental treatments.

Take an active role in your healthcare

Being a part of a clinical trial could provide you with more regularly monitored visits and routine clinical services, which could result in a better standard of care. By simply participating in a clinical trial, you take a more active role in your healthcare. You may gain a greater understanding of the disease or a greater sense of purpose, as taking responsibility for your health can be empowering.

During an LBD clinical trial, you will have access to highly trained physicians and research staff who are extremely familiar with LBD. Depending on the trial, you may also receive a range of diagnostic tests, medical exams, and lab work. Such tests offer an effective way to check up on your health. They may even uncover other health issues which would benefit from treatment, such as high blood pressure, Type II diabetes, or other common conditions.

Advance medical science for future generations

We currently know very little about LBD, which makes LBD research so essential. Clinical studies, like those conducted at the LBDA’s Research Centers of Excellence (RCOE), are focused on advancing our understanding of LBD in several ways.

Some researchers are trying to identify differences in the brain between LBD, Alzheimer’s disease, and Parkinson’s disease. Other researchers are trying to uncover genetic and environmental risk factors that could contribute to LBD. Still others are trying to identify LBD “biomarkers” – measurable biological changes in the body – that can indicate the presence of LBD, or can be used to indirectly measure whether someone might respond to a new treatment or not.

By participating in an LBD research study, you will be helping medical science move forward to solve such LBD mysteries. You will be helping researchers find more effective LBD treatments and possibly even ways to cure or prevent the disorder. Ultimately, you will be contributing to a healthier society for future generations – possibly even your own children and grandchildren.

Fight LBD by finding a purpose that helps others

At the LBDA, we have seen how people living with LBD enjoy an empowered outlook on life, in finding a new purpose that helps others. Enrolling in any LBD study certainly qualifies! It is the sort of generous act that would help others and could ultimately help yourself.

10 Things You Should Know about LBD

Lewy body dementias (LBD) affect an estimated 1.4 million individuals in the United States. At the Lewy Body Dementia Association, we understand that though many families are affected by this disease, few individuals and medical professionals are aware of the symptoms, diagnostic criteria, or even that LBD exists. There are important facts about Lewy body dementias that you should know if you, a loved one, or a patient you are treating may have LBD.

  1. Lewy body dementias (LBD) are the second most common form of degenerative dementia. The only other form of degenerative dementia that is more common than LBD is Alzheimer’s disease (AD). LBD is an umbrella term for dementia associated with the presence of Lewy bodies (abnormal deposits of a protein called alpha-synuclein) in the brain.
  2. LBD can have three common presentations. Regardless of the initial symptom, over time all three presentations of LBD will develop very similar cognitive, physical, sleep and behavioral features.
    • Some individuals will start out with a movement disorder leading to the diagnosis of Parkinson’s disease and later develop dementia. This is diagnosed as Parkinson’s disease dementia.
    • Another group of individuals will start out with a cognitive/memory disorder that may be mistaken for AD, but over time two or more distinctive features become apparent, leading to the diagnosis of ‘dementia with Lewy bodies’ (DLB).
    • Lastly, a small group will first present with neuropsychiatric symptoms, which can include hallucinations, behavioral problems, and difficulty with complex mental activities, also leading to an initial diagnosis of DLB.
  3. The most common symptoms of LBD include:
    • Impaired thinking, such as loss of executive function (planning, processing information), memory, or the ability to understand visual information
    • Fluctuations in cognition, attention, or alertness
    • Problems with movement, including tremors, stiffness, slowness, and difficulty walking
    • Visual hallucinations (seeing things that are not present)
    • Sleep disorders, such as acting out one’s dreams while asleep
    • Behavioral and mood symptoms, including depression, apathy, anxiety, agitation, delusions, or paranoia
    • Changes in autonomic body functions, such as blood pressure control, temperature regulation, and bladder and bowel function
  4. The symptoms of LBD are treatable. All medications prescribed for LBD are approved for a course of treatment for symptoms related to other diseases such as Alzheimer’s disease and Parkinson’s disease with dementia, and offer symptomatic benefits for cognitive, movement, and behavioral problems.
  5. Early and accurate diagnosis of LBD is essential. Early and accurate diagnosis is important because LBD patients may react to certain medications differently than AD or PD patients. A variety of drugs, including anticholinergics and some antiparkinsonian medications, can worsen LBD symptoms.
  6. Traditional antipsychotic medications may be contraindicated for individuals living with LBD. Many traditional antipsychotic medications (for example, haloperidol, thioridazine) are sometimes prescribed for individuals with Alzheimer’s disease and other forms of dementia to control behavioral symptoms. However, LBD affects an individual’s brain differently than other dementias. As a result, these medications can cause a severe worsening of movement and a potentially fatal condition known as neuroleptic malignant syndrome (NMS). NMS causes severe fever, muscle rigidity, and breakdown that can lead to kidney failure.
  7. Early recognition, diagnosis and treatment of LBD can improve the patients’ quality of life. LBD may affect an individual’s cognitive abilities, motor functions, and/or ability to complete activities of daily living. Treatment should always be monitored by a physician and may include prescriptive and other therapies, exercise, diet, sleep habits, changes in behavior, and daily routines.
  8. Individuals and families living with LBD should not have to face this disease alone. LBD affects every aspect of a person – their mood, the way they think, and the way they move. People with LBD and their families will need considerable resources and assistance from healthcare professionals and agencies. The combination of cognitive, motor and behavioral symptoms creates a highly challenging set of demands for continuing care. LBDA was formed to help families address many of these challenges.
  9. Physician education is urgently needed. An increasing number of general practitioners, neurologists, and other medical professionals are beginning to learn to recognize and differentiate the symptoms of LBD – the most misdiagnosed dementia – from other diseases. However, more education on the diagnosis and treatment of LBD is essential.
  10. More research is urgently needed. Research needs include tools for early diagnoses, such as screening questionnaires, biomarkers, neuroimaging techniques, and more effective therapies. With further research, LBD may ultimately be treated and prevented through early detection and neuroprotective interventions. Currently, there is no specific test to diagnose LBD. If you would like to support LBDA’s work helping to further research, please Donate Today.

Diagnosis and Prognosis

How is LBD diagnosed?

Doctors diagnose LBD based on the patient’s history, examination, and possibly other blood tests or brain scans to exclude other causes of dementia, movement disorders, or behavioral problems. There are no medical tests that can diagnose LBD with absolute certainty during life, so when a doctor suspects a patient has LBD based on clinical features, they are diagnosed with “probable LBD.” A diagnosis by specialists very familiar with LBD may be accurate up to 90% of the time.

What kind of healthcare professional diagnoses LBD?

Primary care providers are an appropriate, first-step resource if you are experiencing any cognitive, emotional, or physical changes. However, neurologists generally possess the specialized knowledge necessary to diagnose specific types of dementia or movement disorders, as do geriatric psychiatrists and neuropsychologists. These specialists may require a referral from your primary care provider. Geriatricians, who specialize in treating older adults, are also usually familiar with the different forms of dementia.

What is the long-term prognosis for someone with LBD?

The prognosis is different for each person and may be affected by their general health or the existence of unrelated illnesses. Because LBD progresses at varying rates for each individual, it is not possible to determine how long someone may live with the disease. Research suggests most people live five to eight years with LBD.

Is It LBD or Something Else?

Sometimes early dementia symptoms can be vague, making the type of dementia hard to identify. It may take several years for enough symptoms to develop to point to a specific type of dementia. By learning about common forms of dementia, you can help your physician most quickly identify what type of dementia has developed.

  • Some types of dementia are reversible. They may be caused by an interaction of certain medications, a vitamin deficiency or a curable illness. If you are experiencing changes in your memory or cognitive abilities, please consult with a doctor to identify the cause and begin treatment immediately.
  • For many types of dementia, there are no known cures. These types of dementia mainly affect older adults, though some people are diagnosed with ‘early-onset dementia’ as young as their forties.

Getting an early and accurate diagnosis along with appropriate treatment is very important since people with LBD often respond very differently to certain medications.

Common Forms of Dementia

Alzheimer’s disease symptoms include a progressive loss of recent memory, problems with language, calculation, abstract thinking, and judgment, depression or anxiety, personality and behavioral changes, and disorientation to time and place. LBD is frequently misdiagnosed as Alzheimer’s disease, especially in the early stage. Over time, changes in movement, hallucinations, or RBD can help distinguish LBD from Alzheimer’s disease.

Lewy body dementia (LBD) is an umbrella term for a form of dementia that has three common presentations.

  • Some individuals will start out with a change in thinking that may resemble Alzheimer’s disease, but over time two or more distinctive features become apparent, leading to the diagnosis of ‘dementia with Lewy bodies’ (DLB). Symptoms that differentiate LBD from Alzheimer’s include unpredictable levels of cognitive ability, attention, or alertness, changes in walking or movement, visual hallucinations, a sleep disorder called REM sleep behavior disorder, in which people physically act out their dreams, and severe sensitivity to medications for hallucinations. In some cases, the sleep disorder can precede dementia and other symptoms of LBD by decades.
  • Others will start out with a movement disorder leading to the diagnosis of Parkinson’s disease and later develop dementia and other symptoms common in DLB.
  • A small group will first present with neuropsychiatric symptoms which can include hallucinations, behavioral problems, and difficulty with complex mental activities, leading to an initial diagnosis of DLB.

Regardless of the initial symptom, over time all three presentations of LBD will develop very similar cognitive, physical, sleep, and behavioral features, all caused by the presence of Lewy bodies throughout the brain.

Vascular dementia is caused by a series of small strokes that deprive the brain of vital oxygen. Symptoms – such as disorientation in familiar locations, walking with rapid, shuffling steps, incontinence, laughing or crying inappropriately, difficulty following instructions, and problems handling money (these symptoms may appear suddenly and worsen with additional strokes). High blood pressure, cigarette smoking, and high cholesterol are some of the risk factors for stroke that may be controlled to prevent vascular dementia.

Frontotemporal dementia (FTD) includes several disorders with a variety of symptoms. The most common signs of FTD include changes in personality and behavior, such as inappropriate or compulsive behavior, euphoria, apathy, the decline in personal hygiene, and a lack of awareness concerning these changes. Some forms of FTD involve language and speech symptoms or movement changes.