Understanding Lewy Body Dementia

Dementia is a general term for diseases that lead to a decline in memory, thinking, speech and physical abilities. All dementias are caused by some sort of degeneration of the brain.

Dementia does not always mean Alzheimer disease. About 15% of all dementias are called dementia with Lewy bodies, which has a close link with Parkinson disease. New research is also showing genetic links between Alzheimer disease, Parkinson disease and Lewy body dementia.

Lewy bodies are microscopic deposits of a protein called alpha-synuclein that damage nerve cells (neurons) in the brain. They were first discovered by Dr. Fritz Lewy, a German neurologist studying patients with Parkinson disease.

The neurons that are damaged are hindered in their ability to produce two important chemical messengers, acetylcholine and dopamine. Their decreased production leads to the symptoms of the diseases.

Our current understanding suggests that Lewy body deposits likely cause Parkinson disease, Parkinson disease dementia and Lewy body dementia. They are on a spectrum of disease. Which disease develops depends on which parts of the brain are affected by the Lewy bodies.

In general, if the dementia precedes the onset of Parkinson disease or the dementia begins within the first year of Parkinson symptoms, we term it a dementia with Lewy bodies. However, if the dementia begins more than one year after the onset of Parkinson symptoms, the dementia is classified as a Parkinson disease dementia.

People with Lewy body dementia can have a fluctuating course of worsening and improvement. This contrasts with Alzheimer disease which has a slow steady decline.

About 80% of patients will have visual hallucinations, some quite vivid. They can also have delusions, which are false ideas or thoughts. Patients with Alzheimer disease have fewer visual hallucinations and they tend to develop later in the course of the disease, compared to Lewy body dementia.

People with Lewy body dementia can have REM sleep disorders which include vivid dreams, sleep talking, violent movements during sleep and falling out of bed. This group of disorders, which is more severe than regular dreams and sleep talking, can occur early in the disease.

The Lewy bodies can affect brain cells that control the bladder, the intestines and blood pressure. The resultant symptoms include loss of bladder control, constipation, and fainting episodes, especially when standing.

Finally, people with Lewy body dementia can often have Parkinson movement symptoms. These include tremors, a slow, shuffling gait, an expressionless face (called “mask-like facies”) and stiffness of body parts.

Medications can help some of the symptoms of Lewy dementia, but they do not slow the progression of the disease. Antipsychotic medicines are sometimes used when behaviors or abnormal thoughts become a problem. Care must be taken with the choice of the antipsychotic medication because many worsen Parkinson symptoms by blocking dopamine. Because of this, quetiapine, which has very little dopamine-blocking activity, is often the first choice with Lewy body dementia. Sometimes anti-cholinesterase medications, usually used in Alzheimer disease, are given.

Perhaps more importantly, some medications should be avoided because they can worsen Lewy body dementia and or Parkinson disease. Older antihistamines like diphenhydramine (Benadryl) and bladder relaxing agents may cause worsening of symptoms.

Patients with Lewy bodies dementia and their caregivers are often quite burdened by the dual symptoms of dementia and Parkinson disease. As the largest nonprofit hospice provider in San Diego County and Southwest Riverside County, The Elizabeth Hospice offers personalized, compassionate support to patients and their families, a comprehensive program that goes beyond managing symptoms and relieving pain. Our focus is not on curing the incurable but on bringing meaning and joy to a person’s life.
We provide all the necessary durable medical equipment, like walkers, hospital beds and bedside commodes, as well as the hospice-related medicines. Each patient is placed under the care of an interdisciplinary team comprised of a hospice doctor or nurse practitioner, registered nurse case manager, social work, home health aide and spiritual counselor.

Family caregivers greatly appreciate the support they receive from The Elizabeth Hospice. With our help, they are free to be loving family members without worrying about their loved one’s medical and nursing details of care. Hospice even has respite care, a three-to-five-day stay in a nursing home, supervised by the hospice team, that allows family caregivers the opportunity to take a vacation or other needed break.

The important thing is that you and your loved one will receive the attention and treatment you need and deserve. We call this individualized, compassionate care, The E Way. To find out how your loved one who has been diagnosed with Lewy body dementia or the related disorders can benefit from hospice care, contact The Elizabeth Hospice at 800.797.2050.

By George Delgado, MD, Chief Medical Officer, The Elizabeth Hospice