800,000 people suffer from LBD in the United States.1 Many people have never even heard the name Lewy Body, but the disease has been recognized since the early 1900s. It was first found by Friederich H. Lewy while he was studying Parkinson’s disease.
Lewy bodies are plaques in the brain caused by an abnormal protein similar to the one found in Parkinson’s. These Lewy bodies interfere with brain function causing disruptions in the movement and thinking process.
- fluctuating cognition – decrease in ability to reason and problem solve, difficulty with common tasks such as feeding or dressing themselves
- Parkinson’s type symptoms – the characteristic shuffling gait, muscle rigidity, tremors
- REM sleep behavior disorder – confusion between dream and waking states
- Autonomic dysfunction – constipation, difficulty swallowing
- Frequent falls
- Increased sensitivity to neuroleptic medications – used to treat psychotic disorders
- Psychiatric disorders – depression, delusions, aggression
Currently the only way to definitively diagnose LBD is with an autopsy at the time of death. A physician working with a patient who has LBD type symptoms will obtain a medical history and complete basic diagnostic tests in an attempt to rule out other possible diseases. Neuropsychological testing and cognitive testing may be done. Diagnosis is usually given as possible LBD or probable LBD.
There is currently no cure for Lewy Body. Treatment is often a frustrating process. At this time treatment is symptomatic. Each patient will present differently and will need to work with their physician to find the right mix of medications to try to control symptoms. Support systems are vital to the care of an LBD patient. They will need much tender loving care and understanding. Support systems also need to be in place for the caregiver. They also need much tender loving care and understanding.
Much is not known about LBD and the answers are slow in coming. The average life span given is generally five to seven years after diagnosis, but that is just an estimate. Infections such as urinary tract infection or pneumonia often are the cause of death in a patient.
Nancy Reagan once described the AD process as a long, slow goodbye. This description is appropriate for LBD also. Little by little the patient slips further away from their loved ones. It is an agonizing experience for the caregiver and the patient, especially early in the disease when they realize how much they are losing. Along with dealing with the needs of the patients, the caregiver has to deal with their own grief. Grief tends to come in waves, over and over again throughout the course of the disease.
Raising awareness of this disease has been an important part of my life for the last year as my family deals with LBD. I long for the day when no family has to lose a loved one to the horrors of dementia.
Visit the Lewy Body Dementia Association website for more information