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Suggest Best Treatment For Lewy Body Dementia

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Posted on Wed, 2 Dec 2015
Question: My wife is disgnosed with Lewy Body Dementia, 1st raised as a possiblity in 2003 at XXXXXXX and, due to her on-going deterioration, since confirmed here at the XXXXXXX Medical Center in XXXXXXX as almost certain. She has periods of wide ranging lucidity, stretching from virtually comatose and unmoving to being very alert and conversant on a very wide range of subjects (she was a concert musician prior to this illness). Unfortunately, the "down" times more and more out-weigh the cognatively alert ones.

We retired to a small town in East XXXXXXX with little in the way of medical research facilities. Due to my wife's condition and need for her care -I am her principal caregiver- I am unable to travel to areas with such research resources (before moving here in 2004 I was a research librarian at the Library of Congress and had direct access to the National Library of Medicine).

My question: who is doing the most active work in LBD? What progress are they making? How best can I keep up with their work?
How might I best contact them?

Any leads will be appreciated.
doctor
Answered by Dr. Bonnie Berger-Durnbaugh (1 hour later)
Brief Answer:
See Lewy Body Dementia Association website.

Detailed Answer:
I am so very sorry that your wife is dealing with this disease. I have an aunt who has LBD as well so I have seen it's effects in someone I care much about.

I think your best bet for finding the information you are looking for is with the Lewy Body Dementia Association website:

http://www.lbda.org

On this site under "Research" you can find abstracts and information about clinical trials.

On their home page there is a list of conferences. I understand you probably cannot get away to go to these, but sometimes there are collections of papers that are presented at these that you might be able to get ahold of afterwards.

Various disease associations are good places to find what the current standard of care is and most current data.

I don't know if this applies with the LBD Association, but with some disease associations, one of the people who work there can suggest to you who the prominent doctors or researchers are for this particular disease. So you may want to call them to see: National Office (Atlanta, GA): 404.935.6444

I hope this information helps. Best wishes to you and to your wife.
Note: For further follow up on related General & Family Physician Click here.

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Answered by
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Dr. Bonnie Berger-Durnbaugh

General & Family Physician

Practicing since :1991

Answered : 3134 Questions

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Suggest Best Treatment For Lewy Body Dementia

Brief Answer: See Lewy Body Dementia Association website. Detailed Answer: I am so very sorry that your wife is dealing with this disease. I have an aunt who has LBD as well so I have seen it's effects in someone I care much about. I think your best bet for finding the information you are looking for is with the Lewy Body Dementia Association website: http://www.lbda.org On this site under "Research" you can find abstracts and information about clinical trials. On their home page there is a list of conferences. I understand you probably cannot get away to go to these, but sometimes there are collections of papers that are presented at these that you might be able to get ahold of afterwards. Various disease associations are good places to find what the current standard of care is and most current data. I don't know if this applies with the LBD Association, but with some disease associations, one of the people who work there can suggest to you who the prominent doctors or researchers are for this particular disease. So you may want to call them to see: National Office (Atlanta, GA): 404.935.6444 I hope this information helps. Best wishes to you and to your wife.