Monday, March 13, 2017

Lewy Body Dementia

“My mom has dementia,” the woman said. “How is that different from Alzheimer’s?”

“I think of dementia as an umbrella,” I said. “Beneath the umbrella of dementia are several diseases. Alzheimer’s is the most common kind of dementia.”

In the 2017 Alzheimer’s Disease Facts and Figures, the Alzheimer’s Association lists several diseases that cause dementia and associated characteristics. They are Alzheimer’s, vascular dementia, dementia with Lewy bodies, mixed dementia (more than one cause—the most common is Alzheimer’s and vascular dementia), frontotemporal dementia, Parkinson’s disease, Creutzfeldt-Jakob disease (rare, can be genetic or caused by consuming products from cattle with mad cow disease), and normal pressure hydrocephalus.

The Alzheimer’s Association does not list the rare disease Jim had. His diagnosis was early onset Alzheimer’s disease, but his autopsy revealed the disease he actually had was corticobasal ganglionic degeneration, a disease I had never heard of. The report also mentions “incidental Lewy body,” severe frontotemporal atrophy, tau positive glial inclusions in the white matter, but no evidence of Alzheimer’s disease.

It is easy to understand with overlapping symptoms why diagnosis is so difficult. While searching for an answer to the “why” of Jim’s dementia, we received several conflicting theories, including Parkinson’s and Pick’s disease, before finally settling on Alzheimer’s.

Of course, the mention of Lewy body in Jim’s autopsy, incidental aside, had me researching Lewy Body Dementia (LBD). This disease affects around a million people in the United States.

There is no single test to diagnose LBD, and in the early stages, it may be confused with Alzheimer’s, Parkinson’s, or a mental disorder. Diagnosis is made through examination, laboratory tests, brain imaging, and testing memory and cognition.

Through my volunteer work with the Alzheimer’s Association, I’ve met fellow advocates diagnosed with LBD. I remember one man telling me that his hallucinations were disruptive and disturbing. Unfortunately, people with hallucinations or other behavior problems may be treated with anti-psychotic drugs. Haloperidol (Haldol®), olanzapine (Zyprexa®), and resperidone (Risperdal®) should be avoided because of dangerous side effects, including an increased risk of death.

Lewy bodies attack several different regions of the brain, which causes a variety of problems for the person with the disease. Short-term memory, perception difficulties, processing information, and language issues can be confused with Alzheimer’s. Movement disorders are similar to Parkinson’s with tremor and muscle stiffness. The distinction between LBD and Parkinson’s dementia is based on the timing of dementia. In LBD, dementia will quickly follow parkinsonism within a year, but people can have Parkinson’s and not develop dementia for many years.

People with LBD often have sleep disorders. The vivid dreams associated with REM disorder may cause a variety of symptoms ranging from talking while sleeping to punching a bed partner. A person with LBD may be tired all the time due to insomnia or restless leg syndrome. They may sleep excessively during the daytime.

LBD is managed in much the same way as Alzheimer’s disease. In addition to physical, speech, and occupational therapy, the Alzheimer’s drug Exelon® may be used. Other drugs may be used to help with movement, sleep disorders, and behavioral problems. The surgical procedure used to relieve the movement symptoms of Parkinson’s is not used when a person has LBD because it may adversely affect cognition.   

LBD causes a variety of behavior and mood changes running the gamut from depression and apathy to agitation, delusions, and paranoia. Managing the health care of a loved one with LBD can be quite challenging for a care partner. If you are caring for a person with LBD, it is important to enlist help from family and friends.

Taking care of yourself and taking breaks will make you a better caregiver. Do not neglect your own health! When dealing with a progressive, degenerative disease, it is crucial that you find moments of joy. Continue to enjoy activities with your loved one as much as you can for as long as you can. Convert challenges into opportunities to use your creativity to live life to the fullest.

Copyright © March 2017 by L.S. Fisher

For an informative publication about Lewy Body Dementia:  https://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia/introduction


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