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 One year, more than 3 docs, 10 visits for 1 diagnosis??!!?? 
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Joined: Wed Feb 25, 2009 5:28 am
Posts: 45
Location: New Hampshire/Somerset UK
Post One year, more than 3 docs, 10 visits for 1 diagnosis??!!??
Houston, we have a problem... This abstract is based on a survey done by the LBDA -- maybe even here -- but the data summarize what we went through with my Dad and the sort of experience so many people go through with their LO's.... multiple "iffy" diagnoses, "experimental pharmacology" as the docs figure out what makes people better or worse ... and if you are really lucky, finally finding a doc able to put all the pieces together and come up with a likely diagnosis and combination of meds that doesn't make things drastically worse. Here's the data -- let's hope this shakes up the medical world! Hugs to you all who continue caring for your LO's

Parkinsonism Relat Disord. 2010 Apr 29. [Epub ahead of print]
Lewy body dementia: The caregiver experience of clinical care.

Galvin JE, Duda JE, Kaufer DI, Lippa CF, Taylor A, Zarit SH.
Department of Neurology, New York University Langone School of Medicine, New York, NY, USA.

BACKGROUND: Lewy body dementia (LBD) is the second most common cause of dementia, however, little is known about how the clinical diagnosis of LBD is obtained in the community or the caregiver experience while seeking the diagnosis. METHODS: The Lewy Body Dementia Association ( conducted a web-based survey of 962 caregivers over a 6-month period. RESULTS: The mean age of respondents was 55.9y; 88% were female and 64% had daily contact with patients. The mean age of LBD patients was 75.4y; 62% were male and 46% lived with a caregiver. The most common presentation of symptoms as reported by LBD caregivers was cognitive (48%), motor (39%) or both (13%). The first diagnoses given to the patients were Parkinson disease or other movement disorder (39%), Alzheimer disease or other cognitive disorder (36%), or mental illness (24%). Fifty percent of patients saw >3 doctors for more than 10 visits over the course of 1 year before an LBD diagnosis was established. Neurologists diagnosed most cases (62%), while primary care providers diagnosed only 6% of cases. No differences were found between the presentation of disease and the number of physicians, number of office visits, length of time to establish diagnosis, or type of doctor who finally made an LBD diagnosis. Caregivers viewed physicians as knowledgeable about disease manifestations and treatment options, but not about disease course/prognosis and available community resources and referrals. CONCLUSIONS: These data highlight a need for increasing physician awareness and knowledge of LBD, which will facilitate accurate diagnosis and treatment. Community resources such as the Lewy Body Dementia Association may serve this end, while also providing practical information and support for caregivers. Copyright © 2010 Elsevier Ltd. All rights reserved. PMID: 20434939

Tue May 04, 2010 8:10 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
That just about sums up our experience, although I was not part of the survey.
Pat [64] married to Derek [80] for 34 years; husband dx PDD/LBD 2005, probably began 2002-2003; Stage 4. I am his caregiver at home.

Tue May 04, 2010 9:26 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Thanks for posting. The LBDA Science Committee reviewed the survey in September 2007, so it must've been emailed out to the LBD community by the end of 2007 (I think through the Lewy Body Digest).

Tue May 04, 2010 11:37 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
And, Celia, as you've pointed out previously, in your father's case -- like so many others -- the LBD diagnosis was flat wrong.

Tue May 04, 2010 10:01 pm
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