Lewy Body Dementia (LBD) has three core symptoms. With a disease such as LBD a doctor can't definitively diagnosis it. Currently, the only way to do this is on autopsy. However, research has shown that these three big symptoms give a pretty good idea of what is going on. The physician rules out any other possible cause of the symptoms a person is having and then based on criteria relating to these and other symptoms gives a diagnosis of probably LBD or possible LBD.
My mom was given a diagnosis of probable LBD. We didn't request an autopsy so this is the best we can do. Yet, when I read the criteria, I have no doubt that Mom had LBD. Reading the list of symptoms was like reading a history of what she was experiencing.
The first core symptom is fluctuating cognition. In many forms of dementia the patient begins a downward spiral and it just gets worse. In LBD, the patient can be really bad one week, day, hour, or even minute and seem fine the next. Also, in LBD, the person loses the ability to do the basics. They forget how to feed, dress or take care of themselves. Sometimes they will begin to do something and then lose track of what they were doing. With Mom, sometimes she would get up and start to head back to the bathroom and then halfway there forget why she was up.
The fluctuating part of the disease is what causes many problems. Early on, it may be easier for the loved one and their family to believe that nothing is happening. As the disease progresses, this fluctuation can cause some to not realize how serious it is and how much help the patient might need. People who aren't with them everyday may think they are faking it or making their symptoms out to be worse than they are. My mom said on several occasions, "I wouldn't wish this on anyone." I think this sums it up really well. Why would someone make up these types of symptoms or try to exaggerate?
The second core symptom is hallucinations. Other forms of dementia do have a component of hallucinations. In LBD the hallucinations are well formed and frequent. Mom saw people. Others see animals or inanimate objects. The literature says these hallucinations are not disturbing to the patient. I don't think I agree with that. I know for a fact that "the people" bothered Mom. And I know from talking with other care givers that their loved ones are bothered by the hallucinations.
The problem with the hallucinations is that finding the right drug to treat them is often hard. LBD patients can be very sensitive to drugs, especially ones used to treat these types of symptoms. We were never able to find anything to eliminate the hallucinations. We turned instead to distraction. When we realized "the people" were around we would try to get Mom thinking of something else. We used photo albums with family pictures to spark stories of past events to get her mind off the hallucinations. Humor worked sometimes, also. My brother once told her not to worry about the people because he was big enough to deal with them. I would sing to her and be silly. If nothing else worked, we would open the front door, tell the people to get out and not come back.
The third core feature is what is called spontaneous parkinsonism. What this means is the patient experiences Parkinson's type symptoms. They may have stiff muscles, a shuffling gait, or tremors. At different times throughout the course of her disease, Mom had all of these symptoms. Early on it was just the slow loss of use of one arm, then came the tremors in the same arm. The last few years she often shuffled when she walked and her muscles became very rigid.
We used some medications to try to control the symptoms. However, we did have to learn to deal with them. We helped her get up and down. Dressing herself was hard because of the stiffness in her arms and legs. The tremors were probably the worst part of this. When sitting at the table her arm would jump so hard it would hit the edge of the table. My brother finally bought some pipe insulation, slit it open the long way and taped it to the edge of the table to cushion the blow when she was jumpy. We put sliders on the bottoms of the chairs to help push them in and out from the dining table.
These three features are the core of LBD. There are many other symptoms that wreak havoc in a patient's life. A patient can have any combination of these symptoms and often that changes over time. What is true of their condition today may not be tomorrow. Because of this, treating LBD can be challenging. One physician told us that it was simply a matter of trial and error to find the right mix of medications. Finding other ways of dealing with the symptoms is often an important adjunct to the drug therapy.
So much is not known about Lewy Body. Patients and loved ones are left with trying to deal with this. My hope is that someday there will be the support and information available to anyone who finds they or a loved one has this dreadful disease.