Your Guide to Dementia with Lewy Bodies

Dementia with Lewy Bodies is a form of dementia characterized by protein deposits in the brain. It can cause problems with brain function, movement and behavior, along with the memory loss that is typical of dementia.

Lewy Body dementia is a life-altering diagnosis that affects more than 1 million Americans and their families. And while the symptoms of dementia with Lewy Bodies are similar to some other types of dementia, such as Alzheimer’s disease, it is a distinct diagnosis in several ways.

The accumulation of Lewy Body proteins in specific brain cells is a frequent contributing cause of dementia, accounting for around five to 10 percent of dementia diagnoses. The disorder typically strikes adults over the age of 50, but it can affect younger people as well. Men seem to be affected more often than women.

Currently, there is no cure for Lewy Body dementia. Still, people living with this diagnosis and their caregivers can develop plans to manage symptoms and maintain a good quality of life.

What Is Lewy Body Dementia?

The term “Lewy Bodies” refers to the work of Dr. Friederich Lewy, an early-20th century German neurologist. In 1912, Dr. Lewy discovered abnormally high amounts of alpha-synuclein protein deposits, or antibodies, in patients with Parkinson’s disease.

Later, researchers developed two related clinical dementia diagnoses that fall under the Lewy Body umbrella: dementia with Lewy Bodies and Parkinson’s disease dementia. The two disorders share similar symptoms and involve the same underlying brain changes, but the symptoms appear in a different order depending on where the Lewy Bodies first form. Parkinson’s disease can be sub-classified into a few different types — not all people with Parkinson’s disease have Lewy Bodies or go on to develop dementia.

What Causes Lewy Body Dementia?

Lewy Body dementia, or dementia with Lewy Bodies, occurs when abnormal protein deposits (Lewy Bodies) accumulate inside certain neurons, or brain cells. As the disorder progresses, the Lewy Bodies attack and damage neurons that control movement, thinking and memory. The Lewy Bodies affect:

• The cerebral cortex, which manages information processing, perception, thought and language
• The limbic cortex, which helps regulate emotion and behavior
• The hippocampus, which is essential for creating new memories
• The midbrain and basal ganglia, which affect movement
• The brain stem, which regulates sleep and alertness
• Olfactory pathways, which are important for recognizing smells

What Are the Symptoms of Lewy Body Dementia?

Lewy Body dementia symptoms often mimic those of Alzheimer’s and Parkinson’s disease, making it difficult to receive a proper diagnosis during the early stages. Symptoms affect cognition and memory, behavior, sleep, movement and autonomic functions such as blood pressure and continence.

Common early symptoms of dementia with Lewy Bodies include:

• Problems remembering information, planning, focusing and understanding visual information
• Visual hallucinations
• Parkinson-like symptoms including slowness, tremors, stiffness and trouble walking
• Decreased depth perception and other visual disturbances involving spatial relationships
• Delusions, or beliefs with no basis in reality
• Unusual changes in behavior, including aggression or depression

Distinct symptoms related to sleep can signal a need to test for Lewy Bodies, especially REM Sleep Behavior Disorder (RBD), where people act out their dreams during the rapid eye movement (REM) part of the sleep cycle. RBD behavior often involves frequent movements, including flailing or punching, alongside yelling or speaking. Upon waking, people living with RBD can have a hard time separating their dream states from reality.

Other symptoms are physiological. Blood pressure changes can contribute to fainting episodes. Some people living with Lewy Body dementia have trouble swallowing or lose bowel and bladder control. Others may experience body temperature fluctuations.

The Stages and Progression of Lewy Body Dementia

Dementia with Lewy Bodies is a progressive disorder. As time goes on, people living with this condition will develop worsening symptoms. No two people living with Lewy Body disease will experience this progression in the same way, but researchers have identified five general stages:

Stage 1

Individuals, their family, friends or caregivers first become concerned that something may be wrong in this stage. They may notice symptoms including hallucinations, impaired comprehension and cognition, mild to moderate memory issues, mood fluctuations and loss of smell. Throughout stage one, symptoms are typically minor, but may be more pronounced at the end of stage one.

Stage 2

In this stage, it becomes more apparent that there is an ongoing health problem that needs attention, versus just minor symptoms. In stage two, symptoms include significant motor skills deterioration, problems performing self-care tasks, paranoia and agitation, word-finding issues (aphasia) and delusions.

Stage 3

It’s stage three in which physicians typically have enough information and consistent symptoms to form a diagnosis. The individual with the disease may experience increased difficulty handling communication, self-care, mood fluctuations and may be unable to drive at this stage. Most people living with Lewy Body dementia will be unable to work, read or solve multi-step problems by the end of stage three. At least part-time support from a caregiver or community is typically recommended in this step, or even at stage two if a diagnosis can be found earlier.

Stage 4

In stage four, individuals will need help handling basic needs, including transfers to and from bed. Many people living with Lewy Body dementia are declared mentally incapacitated by this point and are no longer able to make decisions. Agitation, paranoia and depression may worsen. Caregivers will need to arrange 24-hour supervision or monitoring to ensure the individual’s safety.

Stage 5

At this point, serious health issues like pneumonia become increasingly common. Fever, inability to swallow and pronounced muscle contractions are common. By this final stage, people with a diagnosis of dementia with Lewy Bodies have likely lost the ability to speak and are experiencing near-constant delusions.

Progression Through the Stages

Throughout the progression of Lewy Body dementia, symptoms may improve temporarily from time to time. The pace of progression varies widely, though the life expectancy for people living with Lewy Body dementia is just 5 to 7 years after being diagnosed. Still, that is just a rough estimate and some people live for 20 years or more following their diagnosis, depending on other conditions and the severity of symptoms.

Causes and Risk Factors

Researchers can’t explain why some people develop Lewy Body dementia while others don’t. No one has definitively identified specific causes that trigger the buildup of Lewy Bodies, and most people who receive the diagnosis have no family history of the disorder. Researchers also have not been able to conclusively link any gene to Lewy Body dementia.

However, there are a few risk factors you can use to evaluate your or your relative’s likelihood of developing dementia with Lewy Bodies.

For instance, people with Parkinson’s disease are at high risk of developing Parkinson’s disease dementia at some point after their initial diagnosis. This seems to be more common among people who received a Parkinson’s diagnosis later in life or who have been living with it for an extended number of years.

People who have been living with REM sleep behavior disorder also seem to be at higher risk.

Treatment and Care

While there is no cure for Lewy Body dementia, symptom management can improve the quality of life for someone living with the disease.

Symptom Management with Medicine

Certain medications can help control symptoms. Cholinesterase inhibitors like Aricept®, Exelon® and the generic levodopa can treat cognitive symptoms and, sometimes, behavioral symptoms. These medicines increase the chemical acetylcholine, which is integral for memory and learning. Insufficient acetylcholine levels impact attention and alertness and may contribute to hallucinations and other behavioral symptoms.

Cholinesterase inhibitors are part of a long-term strategy for treating Lewy Body dementia; the benefits will become more apparent over time.

Symptom Management with Non-Medical Treatments

Reduce Stress: One of the primary ways caregivers can help mitigate the impact of symptoms is by reducing stress and anxiety in the individual’s everyday life. Both caregivers and people living with Lewy Body dementia can benefit from exercise and a regular sleep schedule. It can also be helpful to reduce noise and situations that can feel overwhelming.

Adjacent Issue Treatment: Sometimes, behavioral symptoms emerge that are related, but not directly caused by Lewy Body dementia. For example, issues like constipation can contribute to changes in behavior and mood. Treating these adjacent issues can improve behavioral symptoms.

Speech and Physical Therapy: Therapy interventions can also lessen the impact of Lewy Body dementia symptoms. Speech therapy can help improve the communication skills of patients, including non-verbal communication. Physical therapy can help people learn how to compensate for issues with movement for as long as possible.

Counseling and Mental Health Therapy: Receiving a life-altering diagnosis is an emotional challenge for everyone involved. Mental health therapy for people living with Lewy Body dementia and their support network of family and friends can provide tremendous benefits. Not only can an impartial mental health professional help guide families through their emotions, they can also address symptoms involving mental capacity, behavior and depression.

Additionally, many people who are living with a serious health diagnosis feel guilty about burdening their caregivers with their worries and concerns. Counseling sessions can provide an opportunity for venting, grieving and developing stress management strategies.

Helping a Family Member or Friend with Lewy Body Dementia

People newly diagnosed with Lewy Body dementia no doubt have a difficult path ahead of them, but there are ways to help them live fulfilling lives with moments of joy every day. Developing a symptom management plan and addressing practical matters early in the progression of the disorder can help families move forward in the most positive way possible.

While the experience of helping a person with a serious diagnosis can be quite rewarding, caregivers need to take time out for self-care, too. Unmanaged caregiver stress can lead to significant issues, including physical and psychological symptoms that can impact the caregiver’s own quality of life. Respite care and memory care services designed to support individuals with dementia can give caregivers a much-needed break.

Along the way, it is crucial to partner with health professionals who focus on support that helps individuals maximize their abilities and maintain their autonomy as much as possible. Especially during the early stages, people with a Lewy Body dementia diagnosis are usually capable of making thoughtful decisions about their current and future care. Respecting those decisions, and advocating for them when necessary, is one of the most important ways a caregiver can provide support.

When it’s time for full-time support, consider a memory care community with experience supporting individuals with dementia with Lewy Bodies. Memory care communities like the one at Tudor Heights provide 24/7 health monitoring and specialized programming for individuals with memory impairments.

If you have any questions about dementia or how memory care can help, please feel free to reach out. Our care experts are available to help you understand the diagnosis and how you can support relatives and friends who are dealing with a difficult diagnosis.