Lewy Body Dementia

• The hallucinations of LBD are typically visual; they may begin with a sense of a presence or shadow, typically in the periphery.
• Other forms include illusions, where an everyday present object is mistaken for something else, such as a telephone wire taking on the appearance of a snake.
• As the disease progresses, frank hallucinations can be seen, often appearing like an indistinct person, small child, or animal. Initially there is preserved insight, meaning the patient can tell there is no one or nothing there, but later in the disease, the distinction between reality and hallucination becomes difficult.
• Auditory (sound) hallucinations can occur too, ranging from a soft murmur to indistinct voices.
• Sometimes there can be more than one hallucination, and patients may comment on the presence of a group of people, sounding like the background noise of a dinner party.
• Tactile hallucinations, causing the feeling of something such as bugs, are less common.

Delusions refer to fixed, false beliefs that are not based in reality. Examples can include paranoid delusions such as a spouse’s infidelity, people stealing from them; and delusions of reference, meaning a strong feeling that a person or a place is not what they seem. For example, a patient may feel that their wife is a different woman, or that their home is not actually their home. This is different from a loss of recognition or disorientation, and may take on a bizarre quality such as insisting that the furniture in the “false” home has been stolen or replicated from the “real” house. Arguing with the delusion tends to make things worse.

Also a core feature of LBD is the presence of REM sleep behavior disorder (RBD), typically preceding the cognitive and movement disorder by several years, even decades.

During REM sleep, when we dream, normally the only part of our bodies that move are our eyes – the rest of the body is paralyzed. This is why it’s known as Rapid Eye Movement (REM) sleep. In RBD, the body is not paralyzed during REM sleep. This can cause acting out of dreams, such as kicking and punching. Classically, the dreams can be quite violent, but the dreamer is not the primary aggressor, meaning he is defending against attack by a person or thing. In the process, the patient may kick, punch, yell out, or even attempt to strangle his bedfellow.

Patients are often not particularly bothered by RBD, but this symptom can be a safety concern for the patient as well as the bedfellow. RBD can be treated with melatonin and clonazepam. Safety measures can include having the bedfellow sleep in a different room, keeping the bed low to the ground, locking up firearms and removing anything that can be used as a weapon from the bedroom.

One striking manifestation of LBD is fluctuations of awareness. Patients may appear to be awake but not responsive, lasting for several minutes, then returning to baseline level of alertness. Typically, this will prompt an emergency evaluation to exclude stroke or seizure, and all testing is inconclusive. These types of episodes may occur infrequently and there is no known treatment.

The parkinsonism that develops in LBD includes symptoms of slowness, stiffness, shuffling gait, tremor, and imbalance.

Avoidance of antipsychotic medications such as Seroquel (quetiapine), Zyprexa (olanzapine), Haldol (haloperidol), Risperdal (risperidone), and dopamine-blocking anti-nausea medications such as Reglan (metoclopramide) and Compazine (prochlorperazine) is key given the high likelihood of a negative reaction.

Acetylcholinesterase inhibitors such as Aricept (donepezil) and Exelon (rivastigmine) can be helpful for cognitive dysfunction and other behavioral symptoms.

The parkinsonism (slowness, stiffness, shuffling gait, tremor, imbalance) that develops in LBD is less responsive to levodopa compared to idiopathic (typical) PD. Sometimes there is a mild improvement, sometimes temporary, but no significant or dramatic improvements are seen with medication. Physical therapy, occupational therapy, and exercise certainly play a role in the management of the motor symptoms of LBD.

While there are no curative treatments for Lewy Body dementia at this time, at Pacific Neuroscience Institute we are confident that accurate diagnosis is the first step in research opportunities and improved treatment and prevention of progression.

LBD is a progressive neurodegenerative disorder. Most people experience a gradual decline in thinking, movement, and daily function over several years. With comprehensive care, many patients can maintain meaningful activities and social connections in the earlier stages.

On average, life expectancy is about 5 to 8 years after diagnosis, though some individuals live longer. Factors such as overall health, age at diagnosis, and the presence of other medical conditions can influence survival.

Common symptoms include fluctuations in attention and alertness, visual hallucinations, parkinsonism (slowness, stiffness, tremor, imbalance), REM sleep behavior disorder, and cognitive decline. Delusions, mood changes, and changes in blood pressure regulation may also occur.

“Dementia” is a general term for cognitive decline that interferes with daily life. Lewy body dementia is one specific type, caused by Lewy body protein deposits in the brain. Compared to Alzheimer’s disease, LBD more often causes hallucinations, movement symptoms, and dramatic fluctuations in awareness.

There is no single “best” treatment — management is individualized. Many patients benefit from cholinesterase inhibitors for cognitive and behavioral symptoms, cautious use of levodopa for movement problems, treatment for REM sleep behavior disorder, and supportive therapies.

The “one-year rule” helps distinguish between Parkinson’s disease dementia (PDD) and LBD. If cognitive symptoms appear before or within one year of movement symptoms, the diagnosis is Lewy body dementia. If dementia develops more than a year after Parkinson’s symptoms, it is considered PDD.

Key red flags include vivid visual hallucinations, marked fluctuations in cognition or alertness, REM sleep behavior disorder, and parkinsonism without a strong response to Parkinson’s medications.

In the advanced stages, patients may become bedridden, unable to communicate, and dependent for all care. Complications such as infections, swallowing difficulties, and falls often contribute to decline. Hospice care can help manage symptoms and provide comfort during this stage.