Symptoms

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Per National Institutes of Health, Pub No. 15-7907 and:

https://www.nia.nih.gov/health/what-lewy-body-dementia#signs

Symptoms that distinguish Lewy body dementia from other dementias may include:

• visual hallucinations early in the course of dementia
• fluctuations in cognitive ability, attention, and alertness
• slowness of movement, difficulty walking, or rigidity (parkinsonism)
• sensitivity to medications used to treat hallucinations
• REM sleep behavior disorder, in which people physically act out their dreams by yelling, flailing, punching bed partners, and falling out of bed
• more trouble with complex mental activities, such as multitasking, problem solving, and analytical thinking, than with memory

People with LBD may not have every LBD symptom, and the severity of symptoms can vary greatly from person to person. Throughout the course of the disease, any sudden or major change in functional ability or behavior should be reported to a doctor.  The most common symptoms include changes in cognition, movement, sleep, and behavior.

Cognitive Symptoms

LBD causes changes in thinking abilities. These changes may include:

• Dementia—Severe loss of thinking abilities that interferes with a person’s capacity to perform daily activities. Dementia is a primary symptom in LBD and usually includes trouble with visual and spatial abilities (judging distance and depth or misidentifying objects), planning, multitasking, problem solving, and reasoning. Memory problems may not be evident at first but often arise as LBD progresses. Dementia can also include changes in mood and behavior, poor judgment, loss of initiative, confusion about time and place, and difficulty with language and numbers.
• Cognitive fluctuations—Unpredictable changes in concentration, attention, alertness, and wakefulness from day to day and sometimes throughout the day. A person with LBD may stare into space for periods of time, seem drowsy and lethargic, or sleep for several hours during the day despite getting enough sleep the night before. His or her flow of ideas may be disorganized, unclear, or illogical at times. The person may seem better one day, then worse the next day. These cognitive fluctuations are common in LBD but are not always easy for a doctor to identify.
• Hallucinations—Seeing or hearing things that are not present. Visual hallucinations occur in up to 80 percent of people with LBD, often early on. They are typically realistic and detailed, such as images of children or animals. Auditory hallucinations are less common than visual ones but may also occur. Hallucinations that are not disruptive may not require treatment. However, if they are frightening or dangerous (for example, if the person attempts to fight a perceived intruder), then a doctor may prescribe medication.

Movement Symptoms

Some people with Lewy body dementia may not experience significant movement problems for several years. Others may have them early on. At first, signs of movement problems, such as a change in handwriting, may be very mild and thus overlooked. Parkinsonism is seen early on in Parkinson’s disease dementia but can also develop later on in dementia with Lewy bodies. Specific signs of parkinsonism may include:

• muscle rigidity or stiffness
• shuffling gait, slow movement, or frozen stance
• tremor or shaking, most commonly at rest
• balance problems and falls
• stooped posture
• loss of coordination
• smaller handwriting than was usual for the person
• reduced facial expression
• difficulty swallowing
• a weak voice

Sleep Disorders

Sleep disorders are common in people with Lewy body dementia but are often undiagnosed. A sleep specialist can play an important role on a treatment team, helping to diagnose and treat sleep disorders. Sleep-related disorders seen in people with LBD may include:

• REM sleep behavior disorder—A condition in which a person seems to act out dreams. It may include vivid dreaming, talking in one’s sleep, violent movements, or falling out of bed. Sometimes only the bed partner of the person with LBD is aware of these symptoms. REM sleep behavior disorder appears in some people years before other LBD symptoms.
• Excessive daytime sleepiness—Sleeping 2 or more hours during the day.
• Insomnia—Difficulty falling or staying asleep, or waking up too early.
• Restless leg syndrome—A condition in which a person, while resting, feels the urge to move his or her legs to stop unpleasant or unusual sensations. Walking or moving usually relieves the discomfort.

Behavioral and Mood Symptoms

Changes in behavior and mood are possible in Lewy body dementia.  These changes may include:

• Depression—A persistent feeling of sadness, inability to enjoy activities, or trouble with sleeping, eating, and other normal activities.
• Apathy—A lack of interest in normal daily activities or events; less social interaction.
• Anxiety—Intense apprehension, uncertainty, or fear about a future event or situation. A person may ask the same questions over and over or be angry or fearful when a loved one is not present.
• Agitation—Restlessness, as seen by pacing, hand wringing, an inability to get settled, constant repeating of words or phrases, or irritability.
• Delusions—Strongly held false beliefs or opinions not based on evidence. For example, a person may think his or her spouse is having an affair or that relatives long dead are still living. Another delusion that may be seen in people with LBD is Capgras syndrome, in which the person believes a relative or friend has been replaced by an imposter.
• Paranoia—An extreme, irrational distrust of others, such as suspicion that people are taking or hiding things.

Other LBD Symptoms

People with LBD can also experience significant changes in the part of the nervous system that regulates automatic functions such as those of the heart, glands, and muscles. The person may have:

• changes in body temperature
• problems with blood pressure
• dizziness
• fainting
• frequent falls
• sensitivity to heat and cold
• sexual dysfunction
• urinary incontinence
• constipation
• a poor sense of smell

A BETTER UNDERSTANDING OF SOME SYMPTOMS

The following information from the Parkinson’s Disease Foundation is extremely helpful to get a better understanding of many symptoms.  As a reminder, Lewy body dementia is an umbrella term for two related diagnoses.  It refers to both Parkinson’s disease dementia and dementia with Lewy bodies.  Note that some people with LBD may have a mixture of Alzheimer’s disease as well, so symptoms and understanding may vary.

Types of Cognitive Difficulties in PD

PD affects a variety of cognitive functions.  Problems with executive function are often regarded as the most common.  However, some people may undergo memory problems more significantly, while others will experience a mixture of difficulties.  Most people retain their general intellectual abilities and knowledge as well as the short and long-term memories they acquired prior to the onset of PD.

Executive dysfunction: Executive functions are higher-order mental processes such as problem-solving and planning, initiating and following through on tasks, and multi-tasking ideas or projects.  For a person with PD, paying bills or even taking part in group conversations can be difficult.  Why?  It’s because these activities require a person to be flexible and be able to shift from one category of information or one specific goal to another.  People with PD may describe getting overwhelmed or ‘freezing’ in situations that require the formulation of a series of strategic choices, yet they appear to function perfectly when someone else helps them initiate and persist with a task.  In the absence of some sort of “intellectual scaffolding,” it is more efficient for the person with PD to focus on one goal or concept at a time.  An example is a person who was unable to initiate a project to clean his messy basement, but who successfully completed the task after his wife provided structure and cues by breaking down the task into parts and providing explicit instructions that focused on one single area at a time.

Memory disturbances: Remembering information that has already been learned is the most common difficulty for those with PD and can be improved through use of memory cues.  For a person with PD to effectively learn and retain new information, repetition may be needed.  PD-D affects both short-term and long-term memory functions more severely.

Attention difficulties: As the complexity of a situation increases, it can be difficult for a person with PD to maintain his or her focus or divide his or her attention.  For example, patients may find they can no longer “walk and chew gum at the same time.”  This affects intellectual pursuits and everyday activities such as walking, maintaining balance, and carrying on a conversation.

Bradyphrenia (slowed mental processing): People with PD say that the disease affects how quickly they can process and respond to information.  Slowness in information processing impacts both other cognitive processes (such as problem-solving and retrieving information) and daily activities (such as conversing).

Language dysfunction: The most common language-related difficulty for people with PD is word-finding.  As a person’s PD progresses, he or she may also experience problems with naming or mis-naming, may have difficulty comprehending complex information, and may use more simplified and less spontaneous speech.

Visual-spatial disturbances: Trouble perceiving, processing, discriminating, and acting on visual information in the environment can affect daily life.  For example, it may become difficult to navigate around the house or estimate distances when reaching for something, thereby increasing the risk of falls.  In some cases, visual-spatial impairment in PD may also lead to visual misperceptions, or illusions.

Causes of Cognitive Changes in PD

Our understanding of the causes of cognitive changes in PD is incomplete.  We do know that problems with cognition are related to the same underlying brain changes that result in motor symptoms — that is, premature death of nerve cells, changes in brain neurochemistry, and subsequent alterations in brain circuitry between different brain regions.  In addition, Lewy bodies, the abnormal collections of proteins that are found in nerve cells in PD, are related to changes in motor pathways and to pathways affecting cognitive processes.

Other elements can cause and aggravate cognitive difficulties.  Untreated depression, anxiety, psychosis, sleep, and other behavioral difficulties can exacerbate cognitive difficulties.  In addition, some medications, whether for PD or other conditions, can cause negative cognitive effects as can some non-PD-related general medical conditions, such as infections.

MOVEMENT – further information from the Parkinson’s Disease Foundation:

• Bradykinesia:Bradykinesia means “slow movement.” A defining feature of Parkinson’s, bradykinesia also describes a general reduction of spontaneous movement, which can give the appearance of abnormal stillness and a decrease in facial expressivity. Bradykinesia causes difficulty with repetitive movements, such as finger tapping. Due to bradykinesia, a person with Parkinson’s may have difficulty performing everyday functions, such as buttoning a shirt, cutting food or brushing his or her teeth. People who experience bradykinesia may walk with short, shuffling steps. The reduction in movement and the limited range of movement caused by bradykinesia can affect a person’s speech, which may become quieter and less distinct as Parkinson’s progresses.  https://www.parkinson.org/

Prognosis

Per National Institutes of Health:

Lewy body dementia is a progressive disease, meaning symptoms start slowly and worsen over time. The disease lasts an average of 5 to 7 years from the time of diagnosis to death, but the time span can range from 2 to 20 years. 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, usually before a diagnosis is made, symptoms can be mild, and people can function fairly normally. As the disease advances, people with LBD require more and more help due to a decline in thinking and movement abilities. In the later stages of the disease, they may depend entirely on others for assistance and care.–https://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia/basics-lewy-body-dementia

Genetics: While having a family member with LBD may increase a person’s risk, LBD is not normally considered a genetic disease.