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My 71-year-old husband has had a traumatic brain injury (TBI) diagnosis for about seven years, and the neurologist just told us we now have the Lewy Body dementia (LBD) diagnosis. From what I understand, the LBD comes from the TBI. We weren’t able to spend extra time at the last visit to ask any questions, but certainly will when we see the neurologist again. Thanks!

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There is no proven evidence that TBI causes Lewy body dementia. This type of dementia is frequently found in patients who have Parkinson's disease. The chemical changes they develop in their brains, are similar in both diseases. Many times Lewy body dementia coexist with Alzheimer's disease, making the diagnosis more difficult. At present, the only way to make a 100% accurate diagnosis of any dementia is in the autopsy. The way the various types of dementia are diagnosed before death, is by their symptoms. But this is only an approximate guess, not a definite diagnosis. Lewy body dementia causes more hallucinations and delusions than Alzheimer's. Both have cognitive impairment but it's worse in Alzheimer's. Also, Lewy body dementia progresses more rapidly and death occurs sooner than in Alzheimer's. Around 6 years in average. Alzheimer's patients can last many more years. TBI causes cognitive impairment too and it may lead to other types of dementias but not necessarily to LBD.
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My brother had a diagnosis of probable early lewy's. It was diagnosed solely by his SYMPTOMS. How was your hubby's diagnosed? There are certain symptoms typical to this, but later was told that my brother's symtoms may have come from an old, benign and calcified tumor in his brain found incidentally, or from a stroke diagnosed totally by an overnight change in his handwriting. This is anything but an exact science. I would start with researching Lewy's as there is MUCH information online; see where you think you have a match and see where you do not. Wishing you good luck on the beginning of this journey. My brother did nothing but improve after his diagnosis, but he died after about two years of another condition, so cannot know where his would have gone. He was always able to function, and to discuss his symptoms in detail. Feel free to contact me on private messaging if you want further details.
With this new diagnosis you need a doctor who will TALK to you. Speaking of things that are more rare than hen's teeth.
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Thank you AlvaDeer! I offered some concerns at the appt and the Dr pulled out a “checklist” of sorts for
Lewey Bodies and my husband checked off every box except “falling out of bed”. There are so many symptoms that overlap with the Traumatic Brain Injury. There is so much to take in for both of these diagnosis. I appreciate your response.
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A TBI can lead to a form of dementia or not. Not everyone that has had a TBI will be diagnosed with a form of dementia.
He should be fully tested and formally diagnosed with Lewy Body Dementia. This is VERY important as there are some medications someone with LBD should not take. (some commonly given to people with dementia)
If the Neurologist did the tests to confirm LBD great.
Please note that often LBD is diagnosed in people with Parkinson's
Also LBD can also lead some to become violent. (more so than other forms of dementia)
The important thing then is you have to remember one important thing.
SAFETY.
If it no longer is safe for YOU to care for him at home you will have to place him in Memory Care.
If it is no longer safe for HIM for you to care for him you will have to place him in Memory Care.
The safety issue goes both ways, you do not want to injure him while caring for him and you do not want him to hurt you.
Check the Parkinson's Website for more information about LBD. The Alzheimer's Association website might be of help as well.
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Katefalc Feb 2022
LBD can not be accurately diagnosed until after death and an autopsy is done to check the brain for Lewy Bodies. I know this for a fact as we “ think” my husband may have LBD but can not be certain what type of dementia until autopsy according to our neurology specialist at Yale New Haven Hospital. This is why dementias are difficult to treat… they are all different
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We used to have a gentleman poster here called OldSailor who cared for his wife Luz who had LBD, at home, for many years, until she passed away in 2019. Here is a link to his profile page where you can click on his 'Answers' to perhaps gain some insight:

https://www.agingcare.com/members/oldsailor

Wishing you the very best of luck dealing with a difficult diagnosis for your dear husband.
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