From my research on LBD (Lewy's Body Dementia, or Dementia with Lewy's Bodies) I have seen this very comprehensive checklist of Core and other suggestive features of this disease. Now, I'm not a brain surgeon or neurologist, but since so many things have already been ruled out or don't seem to fit, I decided to look into the rest of what's out there, and see what might be missed.
I would like to thank Estelle Getty (Golden Girls fame), without whom I might have never heard of this disease.
Central Feature:
Dementia: a progressive cognitive decline that features executive functioning deficits, like the inability to plan or perform abstract or analytical thinking.
My grandfather most definitely has this now. He has lost the ability to keep track of money, objects, and even seems to have trouble figuring out how to do things like take his insulin or test his blood sugar.
Core Features of LBD:
Fluctuating cognition with clear variations in attention, alertness and wakefulness. This fluctuation may make it difficult to accurately evaluate and test the person on a single visit.
My grandfather shows this variation in cognition on a daily basis. He often substitutes a physical characteristic for someone's name. Some days he never leaves his bed. Other days he's quite alert and full of energy. It follows no clear pattern and is inherently frustrating to both him and myself.
Recurrent visual hallucinations that are typically well formed and detailed. These are usually present early in the course of the illness.
One of the more 'interesting' aspects of this disorder. My grandfather can clearly tell me what he was 'dreaming' about, who he thought was doing what, etc... He has also had a couple of violent episodes where his thrashing about has broken furniture, knocked over a chair, etc. He thought he was fighting a tiger, he was really kicking the heck out of my basket drawers. That incident really frightened me, so I made sure to keep the video baby monitors on at all times.
Parkinsonism usually occurs at the same time or after the onset of dementia in LBD patients, and precedes the other symptoms by several years in Parkinson’s disease dementia patients.
I have seen MANY of the Parkinson's symptoms appearing since I started caring for him about 6 years ago. When he was recovering from pneumonia he had overcome many of the deficits that illness caused, but never fully regained his strength, dexterity, or balance.
- Muscle stiffness and rigidity His arms and legs, and hands cannot be moved easily because his muscles are held so tensely all the time, and he cannot control it.
- Very slow movements, frozen stance He has trouble starting to move, like he is frozen in place when he starts to walk, and rising from a chair or bed is almost like moving stones. It often takes him hours to accomplish simple tasks like washing up and dressing, shaving, or brushing his teeth.
- Balance difficulties, shuffling gait He barely lifts his feet from the floor but he can if asked to march in place. He is quite good at 'showboating' and will impress the heck out of anyone who challenges his strength, balance or endurance, but minutes later is almost incapacitated from the effort.
- Tremor When asked to stand/hold still, he has some shakiness, loss of balance issues. He has hand and foot tremors and uncontrollable foot/knee/ankle movements.
- Loss of dexterity He has trouble zipping/buttoning shirts/clothing
- Small handwriting His printing and signature are about 1/3 the size of normal and he cannot open his grip or relax his hand to make it any larger.
- Stooped posture (pronounced leaning, generally to one side or forward) He has an almost dangerous forward lean when he walks or stands in one place.
- Blank facial expression My grandfather almost never has an expression lately. Occasionally something will spark his interest and I will see a glimmer in his eyes. Most of the time though, he just stares as if he was watching a documentary on the History channel (which sometimes he actually IS doing).
REM sleep behavior disorder (RBD)
includes vivid dreaming, talking in sleep, purposeful and sometimes violent movements, falling out of bed, and can lead to injuries. Sometimes only the patient’s bed partner is aware of these symptoms. RBD often precedes cognitive and other LBD symptoms by many years.To say yes to this one is an understatement. We are at all but the falling out of bed part. My grandfather thinks these dreams are sometimes frightening, but mostly he finds them entertaining. I however, do not. I am afraid he will have one that is a bit TOO vivid and he will wander. We're not there yet, but I wonder how long until that happens.
Severe sensitivity to certain neuroleptics (medications used to treat psychiatric symptoms).
Abnormal result on SPECT or PET scans of brain function, which are often only performed at specialized clinics.
These two are unknown at this point. He did have haldol at one point when he was hospitalized for pneumonia and was completely out of his tree for about a week. We all attributed it to his having an infection, but looking back, it may have been a warning sign. He has also had other medications while in the hospital to calm/sedate him, and I wonder if any of those caused the mental issues we had back then. I'm hoping the neurologist we are going to see has some answers for us as far as brain function scans.
Basically, a "Probable" diagnosis can be safely made with the following:
- Dementia and two core features (check and check x2)
or
- Dementia, one core feature, and one or more suggestive features.
Since my grandfather has dementia (and I do not think ANY doctor would argue that) and I believe at least 4 out of 6 "Core" features I'm guessing this is the right path to be looking down.
I'll be writing more later, but I need to take advantage of sleep!
Information extracted from the Lewy Body Dementia Society (www.lewybody.org) and Lewy Body Dementia Association (www.lbda.org)
