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 TBI causing LBD? 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3327
Location: Vermont
Post TBI causing LBD?
There was a couple on our local tv news tonight, and the wife has LBD. They did at least 5 - 7 min. about her, about LBD, etc. She said, and her husband backed her up, that "My LBD was caused from my having some brain damage in a car accident when I was a teenager." Does anyone know if there is research on traumatic brain injury causing LBD? I was glad they were on tv talking about LBD. Now at least some more people know about it who didn't before. I wish they'd go on the Today Show or something with a huge viewing audience. They spoke at the CG support group last winter too. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Sep 08, 2011 8:32 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: TBI causing LBD?
I know there was some discussion of this either here or on another forum. Derek did have a head injury when he was young and still has a kind of dent on his forehead. It is widely known now that football players and boxers who incur TBIs often develop dementia later--don't know if it's LBD.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Sep 08, 2011 8:54 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: TBI causing LBD?
One population study showed a clear association between severe head trauma and an increased risk in Parkinson's Disease in later life. And most Lewy Body Dementia is Parkinson's Disease Dementia.


Thu Sep 08, 2011 10:45 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: TBI causing LBD?
Anyone know if there's any research about head injury (concussion) accelerating LBD progression if it was mild prior?

Thanks all,

Best,

Tonya

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First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Fri Sep 09, 2011 6:51 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: TBI causing LBD?
There's very little research into the progression of Lewy Body Dementia. I think we only know about survival time being linked to age of onset, hallucinations, and dysphagia.


Fri Sep 09, 2011 7:39 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 245
Post Re: TBI causing LBD?
Hi Robin,
As you say, not a lot of studies out there, at least not with large enough groups of people to draw general conclusions.

One study in Neuropathology (Hamilton et al, 2008, 22:729-737) found that poor baseline performance on visuospatial tests (eg clock drawing test) was predictive of more rapid decline. This was specific to pathology-confirmed DLB, not AD. The result was somewhat specific to the visuospatial tests, not, for example, shown by Boston naming. It also didn't seem to be accounted for by other clinical or cognitive performance measures that they looked at.

As for brain injury as a risk factor, it's a tricky one to study in dementia. You can't really do retrospective studies where you ask people who already have dementia about their history of brain injury. Prospective studies have to be quite large to have enough cases of both brain injury and incident dementia to pick up anything other than enormous effects. There was one large, population-based study in Canada (Helmes et al, 2011, 25:338-347.) They didn't find a significant association between history of brain injury reported at a baseline interview and subsequent onset of dementia. Similar findings from the Rotterdam study, another large prospective cohort (Neurology 1999; 53:1959-1962). The VA is interested in this question, for obvious reasons, and there are plans underway to try to start a study (I'm involved in this, but it is at early stages of development.)

All that being said, I flinch watching football, and really can't watch kids play any more. So far, thank goodness, the grandchildren are more interested in baseball.

Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Sep 09, 2011 8:52 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: TBI causing LBD?
A NIH abstract seems to indicate a correlation, or, at least, a relationship:
http://www.ncbi.nlm.nih.gov/pubmed/15542981

I'm not sure why retrospective studies cannot be done? Shouldn't TBI be a significant part of a patient's history? It seems as though at least a link could be drawn. There was a lot of publicity last year--perhaps based on flimsy evidence--about sports injuries involving TBI and later dementia.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Sep 09, 2011 9:07 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3327
Location: Vermont
Post Re: TBI causing LBD?
This worries me for my kids, especially one who has had at least 3 concussions that I know of, 1 from football, another from lacrosse and 1 from slipping on a wet tile floor in a boys' dorm. The last one was the worst.

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Sep 09, 2011 9:13 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 245
Post Re: TBI causing LBD?
Hi Pat,
The biggest problem is in getting unbiased reports of history, if you are working with patients with memory impairment! There are two different things that happen to cause problems. One is just forgetting incidents altogether. The other is biased recall (people with a bad outcome may be more likely to remember - or falsely remember - something they think might have caused it.)

if you have access to long-term medical records, of course, this may help! That's one reason we are so interested in working with the VA, and they are eager to figure out how to help their patients.

So it's not that we don't want to do retrospective studies, indeed, people do them a fair amount. It's just that researchers try to be aware of the potential biases that can lead them to draw unwarranted conclusions. To the extent we can avoid this by better study designs up front, we do so. A big chunk of my job consists of helping students and young researchers learn how to do this. You have to match the design to the question and to the challenges in your research area. Every new problem requires new thinking! So it's never boring, and it really matters to have a good group with lots of people thinking hard and bringing different skills and backgrounds together.

(I actually know some of the key guys in the sports injury study world - really interesting findings, but very much based on a "convenience sample" of people who had a certain history, died, and donated brains for autopsy. Again, makes it harder to draw general conclusions about the population.)

Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Sep 09, 2011 9:21 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 245
Post Re: TBI causing LBD?
PS, Lynn, I know what you mean! My husband played serious football through high school, lots of minor head trauma. He decided to focus on academics for college and went to U of Chicago, which did not, I think, even have a football team at that time. But he played club football - no pads, no helmet - and had a major head injury with loss of consciousness, broken facial bones, and needed to have plastic surgery. So he is a walking set of risk factors!
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Sep 09, 2011 9:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3327
Location: Vermont
Post Re: TBI causing LBD?
It will be interesting to see these studies and their conclusions in the future. A friend of ours was in a terrible car accident about 20 yr. ago. I didn't know him at the time of the accident, but met him a few years afterwards. His wife told me that even though he appeared to be totally back to normal the drs. told her at the time of the accident that he would almost surely develop dementia, and probably sooner than he might otherwise. Sure enough, a few years later he stopped talking, had a hard time interacting with people, had the blank face, slept way longer than he used to, among other symptoms. One night she put him in bed about 7 pm like she'd been doing, she went out and she got a call from the police that he was found standing in the middle of a busy city street a few blocks from their home, in his pjs, totally uncommunicative. I don't know how they figured out who he was. Anyway, he died a few years later in a SNF. I remember when I first met them being shocked when she told me the drs. said he'd develop dementia within a few years. He was a very bright engineer at the time.
It seems like going through records of serious head trauma victims and then seeing what their health is X no. of years later would be an interesting study. Or, if they are deceased seeing what was the cause of death and health issues at time of death.

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Sep 09, 2011 9:51 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: TBI causing LBD?
Coy had a serious head injury (5 weeks in the hospital) 10 years before Lewy joined us in obvious ways. But Coy also had RBD many years before the head injury. I'm inclined to think Lewy was waiting in the wings and would have appeared with or without the head injury. But who knows?

Determining RBD onset in the past for someone who has DLB presents some of the same obstacles as asking about past TBIs. Without medical records, it is hard to know how accurate memories might be.

The fact that Coy was one of the early patients at the sleep clinic that identified RBD and that he had neurological exams every 18 months must make him an ideal research subject. No guessing about his sleep history! (Or his head injury.)

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Sep 09, 2011 10:28 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 245
Post Re: TBI causing LBD?
Lynn's friend and Coy would indeed be very interesting to study. The real trick is to find people to compare them with who did not have any head injury, or other potential precursors, but still had a thorough medical history!

I spent all day Thursday in a research meeting, brainstorming about additional new study directions. These are just tough questions, all around, but we are trying hard. Learning something new every day.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sat Sep 10, 2011 2:15 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: TBI causing LBD?
it would be interesting to study my software code that I wrote over the last 13 years to see how my cognitive decline affected my work…..

I know there was proportional decline in quantity…

it would be interesting to see what happened to the quality…

….my guess….the struggle to maintain quality…even to surpass past quality (to compensate for reduce quality)….may not show a drop in quality…

the quality of my work could not be questioned….when I was not watched as I was doing it….I was still turned to for difficult fixes…and delivered…..( :lol: ) denial... :lol: but true….still...

….

software developers would have developed dementia….their past work could be studied in many ways….

other professions that leave a measurable trail should be interesting too….


….this info could be used to help others down the road work longer…

so much inteesting to talk about and think about…

of course those struggling with MCI or early dementia…will fight every attempt to label them as such if they have to give up any of their current pay to stay employed….

of course the alternative is no pay…ask me how I know….

so much of this is unfair….but not any more unfair than anything else….

unless one has a lot of money or is just in the right place….or to restate properly…..only in the right place at the right time with someone who cares at tthat moment….(money helps….but doesn't guarantee anything except a few extra minutes)….

so much could be done….for so many things….but who is going to do them?

each and every one of you…..push….push again….and then again harder….and then when you are ready to quit….don't push….ram it !!!

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sat Sep 10, 2011 3:44 pm
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Joined: Tue Sep 06, 2011 2:28 pm
Posts: 15
Post Re: TBI causing LBD?
Interesting discussion. My dad, Phd, fell hard last winter striking the back of his head. Pre-fall he showed some decline in fine motor and some decrease in cognitive skill, but post fall it seems to have really picked up in speed, he is otherwise very healthy. He fell on a sheet of ice, so I can't believe it was a lewy based fall. He is 85 in college he was a center on the football team, definite head injuries playing that position!


Thu Sep 15, 2011 2:40 am
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