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 genetics 
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Joined: Thu Feb 04, 2010 8:54 am
Posts: 9
Post genetics
I have read many articles that say LB has no genetic trace (hereditary) or that it is not yet known, but at the latest dr app, the dr kept questioning weather anyone had LB... We were only away of late onset AD, but the questioning has left me wondering... anyone know differently or have any insight?
~Tammy


Mon Aug 02, 2010 7:32 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: genetics
Thus far, 6 genetic mutations associated with PD have been discovered. These account for something like 10% of all PD cases. PD is a Lewy body disease. PDD, Parkinson's Disease Dementia, is a Lewy body disease, as it develops from PD. PDD is a Lewy body dementia.

If you have a dementing illness, the chance of your offspring developing a dementing illness is higher than the normal population.


Mon Aug 02, 2010 8:04 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 463
Location: Minnesota
Post Re: genetics
Tammy, good question. Thanks, Robin. It seems you do the research that a lot of us can't find time for and it's appreciated.

I've read a lot of information that says that LBD is not heredity or not likely to be hereditary. I have also read more recent pages that say that, in some cases, LBD can be hereditary. I suspect that nobody will be 100% sure until there is some groundbreaking conclusion agreed to in the medical community - which I take to be not in my lifetime. But I do choose to believe that it can be hereditary. Here's why:

My mother has been diagnosed, at the Memory Clinic at this state's University, as having LBD with Parkinsonism and aspects of Alzheimer's. Both of her parents had some form of dementia and I suspect that, out of her 3 siblings, one certainly shows signs of dementia. My grandfather's dementia was diagnosed as Alzheimer's in 1965. My grandmother's was less dramatic at first and crept in slowly with forgetting things, then not knowing people, you know the drill. With this known family history, there is no way that I can be convinced that dementia, in its many forms, is not hereditary. I am ordering my life accordingly with a Will, Medical Directive, Power of Attorney and Long Term Care insurance (independent of my employer). With one other grandparent having had some form of dementia (not much of a diagnosis in his small town hospital), 75% of my direct relatives in that generation had dementia in some form and each of them could have passed it, or the conditions that lead to it, to me genetically. As I am single and would end up relying upon nieces and nephews for care, I choose to act as if I will have some form of dementia and prepare accordingly. And if it doesn't happen to me - fabulous!

Now here's another question: If hereditary, would it mean that the same dementia is passed on genetically? Or is it dementia in general that is passed and manifests differently in each family member, depending upon other health factors and environment? As you can see from my second paragraph, either the dementia changed from her parents to my mother, the diagnosis was not exactly correct in 1965 or in the 80s with my grandmother. In the 60s and even in the 80s, even now, a diagnosis is mostly educated guesswork.

Does anyone have information about this or an idea of who might?

Thanks.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Aug 03, 2010 10:49 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: genetics
"If you have a dementing illness, the chance of your offspring developing a dementing illness is higher than the normal population."

It doesn't have to be the exact same type of dementing illness that is passed on.

And, of course, there's absolutely no way to confirm a diagnosis unless a brain autopsy was done. Since DLB didn't even exist as a separate disorder before 2005, no one prior to that would've had that as a clinical diagnosis.


Tue Aug 03, 2010 11:49 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: genetics
Kate - I admire you for planning in advance for your care in case you develop dementia. With the population aging as it is, there will be even a larger percentage of us with dementia. We can't expect the gov't to take care of us - we can't afford what we tax payers are paying for now! Getting LTC ins., saving $ for our future care are critical for all of us.
Your family certainly has had a lot of people who have developed dementia, but (playing devil's advocate here) how do you know that there aren't environmental factors that have caused it? Studying larger samples than a handful of families is what will be very important in helping to find causes, genetic patterns, etc. Alz. research has been going on for a long time, and there hasn't been anywhere near the amount of research done on the other dementias. As Robin just said, LBD is a very recent diagnosis so there aren't longitudinal studies with generations of folks from the same family. Thus, no way of making conclusions about genetics vs. environmental factors, etc. at this point.
But, in a family where there has been lots of dementia, hoping for the best but assuming the worst and making a care plan is a smart way to go in my opinion. 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.


Wed Aug 04, 2010 9:33 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 463
Location: Minnesota
Post Re: genetics
Thanks, Lynn.

Getting the LTC insurance is just plain self interest. With one of their parents being my sibling, I figure that nieces and nephews will have their hands full with their own parents and won't be in any shape to deal with an aging aunt (even though two have said they want to). I want to be sure that, even if I don't know it, I get decent care when it's my turn.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Aug 09, 2010 5:09 am
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