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 New Center for Lewy Body Dementia 
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Joined: Sat Sep 23, 2006 1:12 pm
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Post New Center for Lewy Body Dementia
I don't know if anyone has mentioned this in another part of the forum. This is a new center for Lewy body dementia that has opened in the NYC area:
http://aging.med.nyu.edu/patient-care-/our-patient-care-facilities/lewy-body-disease-specialty-center/lewy-body-specialty-cen


Sat Mar 26, 2011 11:38 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: New Center for Lewy Body Dementia
Yes, the press release was posted here in October 2010:
viewtopic.php?f=4&t=2514


Sat Mar 26, 2011 1:38 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: New Center for Lewy Body Dementia
I find this very encouraging. There aren't many specialists focussing on the Lewy Body diseases locally. I attended a talk by one of the few doctors who do that here, in which he talked about the financial barriers to this specialty. He compared it to cardiology. That is pretty much "assembly line" medicine that is rewarded by our payment systems. Patient has symptoms, goes through tests, gets a specific diagnosis, and follows a fairly standard treatment plan (surgery, implants, medications, life style coaching, etc). Some of this is awesomely impressive -- no one is minimizing the value of this approach for heart conditions. The speaker suggested that if cognitive problems could be addressed successfully by this approach there would a Dementia Center on every other block, right next to the Heart Center. :lol: But instead of following predictable protocol, diagnosing and treating dementia is frought with uncertainties, trial-and-error, and time-consuming observation. I don't think I have ever, in more than 30 years, called Coy's cardiology clinic for advice, info, questions about meds, to report side effects, etc. etc. How many of us can say that about our contact rate with the doctors who follow our LO's dementia?

I hope the new center in NY is the vanguard of a trend. Perhaps concentrating skills and resources in one place can realize some economy of scale and synergy of shared experience. If such centers also do research perhaps that can serve as a source of income to partially offset the high time-cost of treating this kind of disease.

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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


Sat Mar 26, 2011 2:47 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: New Center for Lewy Body Dementia
Jeanne,
This is my hope too, that it starts a trend and can put all the resouces in one place, Dementia certainly isn't going away anytime to soon and with people living longer. I just don't see a real end in sight.

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Irene Selak


Sat Mar 26, 2011 3:30 pm
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Post Re: New Center for Lewy Body Dementia
Quote:
time-consuming observation
And, Jeanne, does anyone ever actually do this [besides us, that is]?

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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.


Sat Mar 26, 2011 3:45 pm
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Location: Minnesota
Post Re: New Center for Lewy Body Dementia
Pat, some doctors do take the time to listen to our observations and probe with questions and get a more comprehensive picture than they can see in their office visits. (Some don't, of course.) The doctor who gave the talk does sometimes admit patients to better monitor and regulate their medications before being released back home or to the ltc place. Lots of observation goes on then.

Before Coy's visit at Mayo I always have to fill out a questionaire about my observations, and then have an interview with a nurse while Coy is undergoing tests. Because of the nurse's upcoming vacation one of the first interviews was by phone. I had no trouble answering most of the questions quickly. Can he manage his medications? Can he use public transportation, etc. etc. I could answer "Can he dress himself?" but there was a long pause when she asked, "Does he dress appropriately?" Finally I laughed and said, he's an engineer! She laughed too and said, let me rephrase that. "Does he dress as appropriately now as he did before his diagnosis?" :lol:

Coy participates in a research study. It isn't self-pay and insurance that fully fund these labor-intensive visits. (Those are collected, of course.) There is no quota of patients the doctor is supposed to see each day -- or rather the quota is not income-based.

For doctors, nurses, long term care facilities of all kinds, dealing with dementia is a very time-consuming proposition. (As those of us in the trenches know well!) How we fit this into our system of paying for services is a big challenge for a society soon facing the elder senior boom.

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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


Sat Mar 26, 2011 5:21 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: New Center for Lewy Body Dementia
I guess what I meant by that question was not that doctors aren't listening or doing their jobs but that we who have cared for Lewys 24/7 for years have observed a lot of really interesting phenomena that a mind trained in neuroscience could make some sense of. For example, some have posted that their LO is capable of walking and talking normally in the middle of the night [sleepwalking?] where they are unable to during the day. Just a lot of weird behaviors with Lewy that we often don't read about in the literature.

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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.


Sat Mar 26, 2011 6:07 pm
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Location: Minnesota
Post Re: New Center for Lewy Body Dementia
Definitely, Pat!

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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


Sat Mar 26, 2011 6:55 pm
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