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.
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.
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.
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.
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!
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.