Help, please! Unidentified disorder causing extremely rapid dementia.

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Hello caregivers. This is my first interaction on this forum, so please be patient with me. This particular question is not about my parents (for whom I am the basic caregiver), but about my father's best friend. This gentleman is only 68 and he has been diagnosed with Lewy Body Dementia, because the doctors have run out of ideas. I know many people on this forum deal on a daily basis with many, many illnesses related to dementia, so I am praying for a new thought on this situation. Here goes: The gentleman in question was in our area in June and came to visit my Dad as he always does when he comes to Pennsylvania from Florida. At that time, he seemed only milder more confused than normal, and his wife had indicated that the doctors believed he was having a bad reaction to prescribed prednisone. A few weeks earlier he had had a car accident (minor, no injuries to himself, no one else involved). When he regained conciousness in the car, however, he couldn't remember where he was or how to get home. He walked to a gas station and was sent to a hospital. That seemed to be the beginning. Since we saw him in June (he was still driving, walking, conversing normally at that time), he has spent two months in hospitals, first one in Sarasota and next at the Mayo Clinic in Florida. He has become a shell of himself. He will listen when you speak, but does not respond. His face has become expressionless, The dementia is so bad that his wife has had to arrange for in-home care. The doctors, having run out of options, declared that he has Lewy Body Dementia. My question to anyone out there is: Does this seem logical to you, and/or can you think of ANYTHING else it could be? It's so sad. This gentleman is my Dad's best friend and at one time was my boss and friend as well. My Dad has had Parkinson's for four years now (progressing without much aid from drug therapy), and still this man is far, far worse in just three months than my Dad is in four years,. We're grasping for straws here. The diagnosis just seems so unlikely, and the rapidity with which this illness has progressed is nothing short of frightening. Any thoughts on this are welcome. Thank you in advance.

16 Comments

What, if any, meds is he taking? Some statin drugs cause loss of memory and/or confusion. Just a thought.
My husband has Binswanger Disease....somewhat similar to what you described.
another one with same symptoms depending on stage is Normal Pressure hydrocephelus- My Dad was finally dignosed with this ,after doing a Lumbar drain(to remove fluid on brain) he got back to about normal with memory, walking,and no hand tremors, after a yr symptoms were back and he finally had permanant drain/shunt put in and recorrected again. Now he is on decline again but at 92 that is to be expected.
Make sure this person see's a neurologist,my Dad's saw what he did in cat scan views EVEN tho the radiologist who had read scans a month earlier for Dad's fall didn't.
Question, if the accident was minor what caused him to lose consciousness if the accident was minor. He could have had a light stroke which doesn't always show up on scans for months or years, went through that with my grandmother. Or he could have had a sesiure. Have they said what made him lose consciousness, was that even addressed? I don't know nuch about that form of dementia but I am dealing with it with both my parents and neither one have blacked out from it. I would start with the accident and come forward.
Here is a link to information concerning Binswanger's Disease. It helped me understand the process better then most articles. http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/614/viewAbstract My husband started showing symptoms in 2009 but was not diagnosed in till 2012.
"Grasping for straws" sure struck a chord with me. I wanted so much for there to be something to help my mom and dad, who probably both had vascular dementia, maybe helped along by statin cognitive effects. I thought my dad had Binswanger also, but his doc felt there was no point to a specific diagnosis. He never even had brain imaging. My mom had MRI and it showed a very severe degree of atrophy and the multiple strokes that worsened over time.

There is a usual workup for rapid dementia that would include imaging and basic labs like thyroid levels, B12, folate, etc. There is another condition that is notorious for progressing very fast like this, and its unfortunately not treatable, namely Creutzfeld-Jakob disease. Steroid psychosis does not sound like the best explanation for this either. Antipsychotic meds could cause a drug-induced parkinsonism that would explain part of it, but again, get to a neurologist or maybe a really good geriatrician who could go over all the meds and all the possibilities rather than just be nihilistic about it. You'd think a Mayo clinic would have covered those kinds of things appropriately though!
jrectenwald, I don't believe that doctors settled on Lewy Body Dementia because they ran out of other options. Especially at the Mayo Clinic, where they participate in research on the cutting edge for that particular disease I'm inclined to assume that your friend had the available tests and was given this diagnosis because it best fit the evidence, not because they simply eliminated other options.

I belong to a local support group of caregivers of persons with Lewy Body Dementia. One person's loved one has had LDB for 12 years. My husband is in his 10th year. Another person's loved one went rapidly through all the symptoms and died in less than two years. The rate of progression is all over the map. You can read about "averages" and "typical progression" but each case is unique. Your friend and your father could have the same basic brain pathology ("Lewy bodies") and have radically different progressions.

Currently the only way to confirm a diagnosis is post-mortem examination of the brain. If your friend signs up to donate his brain to a study such as the one the Mayo conducts (as my husband has done) then his family will have a clearer picture of what he suffered from, and researchers will have more evidence on which to base conclusions and make better diagnosis in future patients. But while he is alive, complete confidence in a diagnosis is elusive. One of the goals of research is enable early and accurate diagnosis. Unfortunately that goal has not been reached yet. But if your friend has been to the dementia unit at Mayo he has been to one of the best places for an accurate diagnosis. Perfect? 100% reliable? No, the state of the art is not there yet.

I am so sorry for your friend and his family.



Thank you all so much for your thoughts and insights. I really did not expect so many responses. The members on this site are truly wonderful. First, Noleslover, I'm not sure of a complete list of meds, but I do not believe he has ever taken a statin drug. However, this did all start with the introduction of Prednisone into his system. I don't see a connection, but apparently some of the doctors believed the Prednisone pushed his symptoms to the forefront. Fayday, thank you for mentioning Binswanger's. I have never heard of that, but I will be going to the site you listed as soon as I finish this comment. Ramblinrosey, I had forgotten about Normal Pressure Hydrocephalus. Thank you for stoking my memory. When doctors were unsure of my father's Parkinson's diagnosis, I looked into that as an alternative. I must go back and read up on this illness again. You mentioned, however, that they check spinal fluid in order to verify this diagnosis. I do know that this gentleman (according to his wife) had three Spinal Taps in the past two months. While I don't know the details, I would have thought that they would have checked for that, but oversights do happen. Lillian41, they did three MRIs also, and found no indication of stroke (actually, they found nothing not in keeping with his age). The passing-out incident was the day they began hospitalization and testing on him. I suppose since they believe he has Lewy Body Dimentia, that they are attributing his passing out to that. I really don't know. I haven't gotten to get into the individual particulars of this case, because they only got back to PA last week, and his wife is reluctant to talk when he is around. Vstephans, if there is no cure for Cruetzfeld-Jakob Disease, I am hoping and praying that's not what this is, but I will go to the Web and do some research on it as well. I was wondering about Wilson's disease, also. The doctors did check him for heavy metals, but I don't think copper is considered a heavy metal. So that may still be a possiblity. Thats the problem with this diagnosis. He has only been sick for maybe two months, and he has progressed soooo rapidly that he is nearly vegetative. That is the only reason, Jeannegibbs, that I say that the doctor's had run out of ideas. According to this gentlemen's wife, the doctor's also could not understand why this is progressing so quickly, but they nonetheless decided on Lewy Body Dementia. As far as his trip to the Mayo clinic--I know they are wonderful, but I don't know if outposts such as the one in Florida are up to the standards of the main hospital in Minnesota. It's just so sad, because he was so alive and viable just a few months ago, and now...

Again, thank you all for your help. I am going to go to the Web now and start researching some of the things mentioned here. Take care everyone, and God bless.
After almost 2 years my wife who is 63 was recently diagnosed with Lewy Body Dementia (LBD) by John Hopkins after several tests/scans, MRI, EEG, PET and lastly a datScan which provided a 98% likelihood. It's likely the underlying disease was there put greatly accelerated by the stress of the car accident and ensuing hospitalization. My wife took a terrible downslide after being hospitalized for hyponatremia. Before that she was suffering from depression. Reading up on LBD, visits to the ER and hospitalizations play a significant part in rapid decline. It's a terrible disease and my heart goes out to you and his family
Norm, thank you for your response. I have been doing a lot of research, not only on LBD but also on the other illnesses mentioned above. Unfortunately, the most likely scenario (if indeed the doctors have overlooked something and it is not LBD) is Creutzfeld-Jakob (sp?) disease. Considering what I've learned about that illness, I am now hoping that the doctors are right in diagnosing LBD. Both diseases are awful, but CJD is usually fatal in far less time. The gentelman in question has not yet had a PET scan or a datScan (actually I have never heard of that. Again, I'll have to do research--I'm learning tons on this site.) His family is so tired of him being poked and prodded that I think they've decided to accept the LBD diagnosis and to test no further.

I'm so sorry, Norm, that your wife has been stricken with such a horrible illness at such a young age. While this, I am sure, is difficult for her, I'm just as certain that you are suffering your own silent hell. God bless you and give you patience and strength throughout this ordeal. Take care.

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