Talk:Dementia with Lewy bodies/Archive 1

Commonality order in re of vascular dementia

Both this article and the article on Vascular dementia claim that their respective disease is the 2nd most common cause of dementia. What is the correct order?

Not exactly. This article claims that Dementia with Lewy bodies is the second most common cause of hospitalization for dementia. This could reflect a referral bias (e.g. that patients with Dementia with Lewy bodies experience more falls and are thus hospitalized earlier). —Preceding unsigned comment added by 129.195.0.205 (talk) 15:17, 18 September 2007 (UTC)

Seems to depend on how one defines vascular dementia. "Available data suggest that DLB is more common than pure vascular dementia but not more common than any vascular contribution to dementia." Is dementia with Lewy bodies the second most common cause of dementia? J Geriatr Psychiatry Neurol 15:4 pp. 182–7 (2002) (PMID 12489913) --Sjsilverman (talk) 23:47, 1 July 2008 (UTC)

I erase this part because the article was impropertly cited. According to http://www.nia.nih.gov/Alzheimers/Resources/Lists/vascular.htm , vascular dementia is the 2nd cause. Lechasseur (talk) 23:11, 20 November 2010 (UTC)

WHole article may be needed to rewritten for the layperson

I came upon this page because Estelle Getty was diagnosed with this condition or disease or whatever. Let us say that the article is so full of jargons and medical words that I still have no idea what the hell this thing is.72.80.241.72 (talk) 01:42, 24 October 2008 (UTC)

Working on an Update

I got started updating the page but realized that the changes were sufficient to warrant working on them in my Sandbox and then moving the whole thing over en masse. I will try to make this understandable to the lay person and bring in lots more references. I like the last round of changes and will copy this latest version over to my sandbox as the basis for my rewrite. I welcome people to drop in to my sandbox and look at what I'm doing, comment, suggest changes, etc. cheers, Celia Kozlowski (talk) 14:14, 11 February 2009 (UTC)

Update Completed and Comments by Garrondo

I have completed my update and refurbishment and moved this from my sandbox. Following are comments moved from my talk page to here for further consideration by all who may be interested in this page:

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lewy bodies I was the one to reorder the article. Your improvements seem ok, but I have some comments. Nevertheless I do not have time right now to follow closely the article. Treament and care should be merged. Maybe it would be a good idea to follow a similar structure to the treatment section in the Alzheimer's disease article. At the same time high quality refs should be found per WP:MEDMOS. youtube videos are NOT a quality ref (Additionally per WP:MOS no refs should be added in the titles).Best regards.--Garrondo (talk) 17:08, 18 February 2009 (UTC)

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Hi, Garrondo, I appreciate the simplicity of merging Treatment and Care, but envisaged two different things -- one being the medicine given by doctors and the other the day-to-day care given by carers (home or nursing home). Maybe they need different headers to distinguish the concepts better? I will look at the AD page for ideas on how to make this distinction.

Vis-a-vis the youtube videos, normally I would agree with you, that these are not peer-reviewed etc etc, but, having viewed all 180 minutes of the videos -- taped at a conference organized by the LBDA -- I actually find them to be the most comprehensive, up-to-date information out there. I can find other sources for most of the information, but I truly believe these videos are the best primary sources. The three speakers are expert physicians actually treating LBD. Given that this is an "emerging disease" and, as I've discovered from personal experience, understanding on the part of doctors (most of whom trained long before LBD was discovered) is quite limited, I think this is a very high quality, if not wikitypical reference. Cheers et thanks for all your hard wikiwork, Celia Kozlowski (talk) 21:17, 18 February 2009 (UTC)

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I have taken only a quick look at them and they seem plain language enough; and also of more quality than usual for youtube: I would not eliminate them; but I would rather add more secondary references (review articles) from peer-review journals as the medicine manual of style states. Regarding treatments: it is true they are usually provided by different people, but nevertheless they are both treatments. In the AD article we created 3 different subheaders which could be of use here: Pharmaceutical, psychosocial and caregiving. What do you think? --Garrondo (talk) 09:21, 19 February 2009 (UTC)

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Hi, Garrondo, I looked at the AD file and started moving in that direction by re-heading the section "Caregiving." At this point the psychosocial information is still in the caregiving section, but I don't think there's really enough information to warrant breaking the paragraphs up any further. They are meaty -- short and information-packed -- but I think adequate for now. I will work to add more peer-reviewed references to replace some of the video references. cheers et thanks Celia Kozlowski (talk) 10:43, 19 February 2009 (UTC)

LBD or DLB

It doesn't matter to me which way it appears, only that part way through the article LBD becomes DLB. If there is inconsistency in the literature or disagreement among authorities, this might need to be included in the article. (I could clean up the lettering, but am not prepared to dive into the literature.)

I will say that the article, beyond the above point, seems pretty well written. GeeBee60 (talk) 12:54, 15 May 2014 (UTC)

Yes please, get this straight. It's alarming when the medical community splits into camps over petty things like acronyms to the extent that the main acronym changes repeatedly within its associated article. Blitterbug 21:01, 15 June 2014 (UTC) — Preceding unsigned comment added by Blitterbug (talk • contribs)

The article now seems to use LBD consistently, except for its title. Should the article be renamed? —BarrelProof (talk) 20:36, 3 November 2015 (UTC)

Actually, the current title seems more common in books, according to the Google N-gram viewer. —BarrelProof (talk) 17:37, 10 November 2015 (UTC)

See Lewy Body dementia for LBD. This article did not even mention that PDD and DLB make up LBD. SandyGeorgia (Talk) 01:12, 22 March 2018 (UTC)

Age of onset

This article does not discuss age of onset thoroughly. Maybe typical age of onset of Lewy body disease can be discussed. H Padleckas (talk) 20:37, 16 October 2015 (UTC)a

Lewy bodies etiology matches that of brain parasitosis

Where abnormal protein accumulation marks the site of mobile parasite dwellings. The symptoms mentioned can besides be explained by schizophrenia. To be a nearly newly described disease, described by Japanese, verifiable only post mortem, and a celebrity disease, makes this characterization suspicious of being a misinterpretation and misdiagnosys. — Preceding unsigned comment added by 108.30.56.204 (talk) 07:18, 15 September 2016 (UTC)

Inclusion criteria for the list of notable sufferers

An editor removed some entries in the list of notable sufferers and added a tag requesting for an agreement to be established about who should be included in the list (see this edit). I notice that the list is not too lengthy, so I don't think there is really a big problem that is evident here. I suggest that the following guidelines should be sufficient:

1. The list should only include people that are sufficiently notable to be discussed elsewhere on Wikipedia, either as the primary topic of an article or as a significant subtopic in another article.
2. Each entry should be supported by some cited reliable source(s). If some entry does not have a source citation but is linked to some other article on Wikipedia in which such a reliable source is cited, the appropriate action is to add the citation rather than remove the entry. Also, unless an entry looks really questionable, it may be desirable to place a {{citation needed}} tag on the entry to request an appropriate citation and let some time pass by rather than just removing the entry.

I noticed that Norman Winter appears to fail criterion #1, so I removed him from the list. I checked the articles about Bill Beutel and Maurice Shadbolt, and found that although there are articles about those people on Wikipedia, and those articles say these people had DLB, those claims are unsourced. So I added a {{citation needed}} tag to each of those articles (but I did not restore the list entries for those people here).

—BarrelProof (talk) 18:27, 10 November 2015 (UTC)

• I would like to convert this list to prose; anyone object? SandyGeorgia (Talk) 14:12, 22 March 2018 (UTC)
  • @Doc James:, do you care if I convert this list to prose with paragraphs ? More like how Tourette syndrome is done ... SandyGeorgia (Talk) 01:56, 24 March 2018 (UTC)
    • Happy to lists converted to prose. Doc James (talk · contribs · email) 04:23, 24 March 2018 (UTC)
      • OK, on my list. (I hope you don't think I am going to leave all those short, choppy sections ;) SandyGeorgia (Talk) 05:37, 24 March 2018 (UTC)
        •  Done SandyGeorgia (Talk) 06:48, 24 March 2018 (UTC)

Naming mess

So, we have a naming mess in here. See PMID 28410662 and Lewy body dementia; we do not have an article on Parkinson disease dementia. SandyGeorgia (Talk) 22:48, 21 March 2018 (UTC)

Stopping work for the evening, but intending to work in all of the recent reviews I left in External links tomorrow. And then replace a ton of grossly outdated information and sources. SandyGeorgia (Talk) 22:51, 21 March 2018 (UTC)

Fixed, Parkinson's disease dementia. SandyGeorgia (Talk) 03:24, 22 March 2018 (UTC)

This is all suggestive that Parkinson's disease is well beyond its prime in terms of being a Featured article. SandyGeorgia (Talk) 14:02, 22 March 2018 (UTC)

 Done SandyGeorgia (Talk) 06:48, 24 March 2018 (UTC)

Antipsychotics

With respect to "sensitivity to antipsychotic medications" IMO this best fits in the paragraph on treatment. We already say "Antipsychotics, even for hallucinations, should generally be avoided due to side effects." Not sure this is needed twice in the lead.Doc James (talk · contribs · email) 06:50, 22 March 2018 (UTC)

I did not write any of those words, and don't recall moving any of them, but I like what is there now. "Side effect" is a bit of an understatement for the very real harm that can result. Once I have more time to get fully into every source, I suggest we look at even beefing up the wording we have now. It's a very serious matter. Ditto on anticholinergics. Good for now, may need to beef it up when done. Anyway, I have several more days of work to incorporate 2017 information. Lots of interesting new stuff happening with DLB. SandyGeorgia (Talk) 14:01, 22 March 2018 (UTC)

Agree reasonable to mention deaths. I have split that sentence into two. Doc James (talk · contribs · email) 01:13, 24 March 2018 (UTC)

 Done SandyGeorgia (Talk) 06:49, 24 March 2018 (UTC)

Chlorpromazine

Some commonly used medications that should be used with great caution, if at all, for people with DLB, are chlorpromazine, ...

I cannot find any mention of chlorpromazine wrt Lewy in any review. Anyone else? SandyGeorgia (Talk) 21:49, 22 March 2018 (UTC)

Found, Neef 2006, PMID 16623209. SandyGeorgia (Talk) 04:01, 23 March 2018 (UTC)

It is an antipsychotic so all the caveats that apply to the family apply to chlorpromazine. Doc James (talk · contribs · email) 01:30, 24 March 2018 (UTC)

Yes ... I just am fearful of leaving out any medication that was previously mentioned, so wanted to be sure I could source the existing ones before expanding. I have been leaving some hidden comments inline for when I get to certain sections. SandyGeorgia (Talk) 01:50, 24 March 2018 (UTC)

 Done SandyGeorgia (Talk) 06:54, 24 March 2018 (UTC)

Outdated

Video explanation

With no mention of two of four core symptoms, this video is outdated. SandyGeorgia (Talk) 04:16, 22 March 2018 (UTC)

Sure. Will request they update it. Which do you believe they missed?

• Fluctuation cognition -> basically mentioned
• Visual hallucinations -> mentioned
• Sleep disorder-> mentioned
• Parkisonism -> mentioned Doc James (talk · contribs · email) 06:42, 22 March 2018 (UTC)

Ah, I see now ... they are apparently equating RBD (REM sleep behavior disorder) to "sleep walking and talking". Considering that the overall level of the video gives very technical detail, not aimed at a 12-year-old, I would have expected them to give a better explanation of RBD, since it is now known to be practically predictive of DLB. I will leave the video in, but do not care for how it cuts across section lines. I will move it into the first section once I finish writing here (I have several more days of work to finish here, but before I can adequately work in RBD, I have to repair the awful Signs and symptoms section. I also have to get full text of a few more articles.) SandyGeorgia (Talk) 13:58, 22 March 2018 (UTC)

OK, after reading now a dozen more reviews, it is troubling that this video uses the term "sleep walking and talking" to describe REM sleep behavior disorder, because that is just flat wrong. As I thought. Maybe, if they insisted on dumbifying it, they might have said "limb movements". SandyGeorgia (Talk) 03:47, 23 March 2018 (UTC)

I have restored the video. They say they are willing to update it.

What wording do you want to describe the REM sleep disorder? Doc James (talk · contribs · email) 00:58, 24 March 2018 (UTC)

Are they in a hurry? I still need to get my hands on the two main RBD sources, and then maybe I can put together a list of other concerns about the video, and find the most adequate wording. I do not yet have the two St Louis sources on RBD, but if you have ever observed it, it's the limb movements, the flailing arms, the fighting with an imaginary attacker, that come to mind, and I believe they are more common than sleep walking per se. SandyGeorgia (Talk) 01:55, 24 March 2018 (UTC)

No whenever you are ready to provide input. Doc James (talk · contribs · email) 04:28, 24 March 2018 (UTC)

@Doc James:, now it's there twice :) I am going to take a dinner break so we don't get at cross-purposes. SandyGeorgia (Talk) 01:58, 24 March 2018 (UTC)

Yes my error. Fixed it. Doc James (talk · contribs · email) 04:28, 24 March 2018 (UTC)

Commercial source that does not meet WP:RS

File:Lewy body dementia.webm

File:Tic Disorders.webm

OK, back at this. First, it is more than slightly irritating that Wikipedia editors have to take time to correct off-Wikipedia items (osmosis.org) that are forced into articles. Particularly when you have to sit through listening to the irritating thing over and over to point out all of the errors. Like any other source or link, they can be evaluated by editors and removed from articles when inaccurate.

Second, their font style is jarring: in a page with an entirely different tone and encyclopedic style, I see this comical font foisted upon the lead sections of article after article, and it just doesn't fit. If we are stuck with them, they would be less jarring and their errors would be less problematic if they were in the bottom of the article. Just like information from any other outside source. Obviously, because these videos are aimed at schoolchildren, the tone and presentation is odd for them to be installed in the leads of encyclopedic articles.

Third, these files full of errors might get by on B- or C-class or start articles, but they violate too many pieces of WP:WIAFA to be added to Featured articles. Even if it is not deleted here, it would fit better in the bottom of the article. Only because this is a B-class article. If this article approaches GA, this link needs to go.

Fourth, are editors expected to listen to these videos over and over for years, as they become more and more outdated and more and more wrong? They can't be read and watch listed for accuracy-- one is forced to sit through it.

Fifth, this file was uploaded in January of 2018. The new consensus diagnostic criteria were published in 2017. No excuse for them not to have understood and included REM sleep behavior disorder (not to mention that the significance of RBD has been understood for a decade).

Sixth, see osmosis.org. It is for schoolchildren-- may work for that purpose, but not for encyclopedic content. Further, there is no "about us" information anywhere on their page, and it is a commercial source. They have a product to sell, and we do not even know who they are and how they are funded. On that basis alone, I feel pretty well justified in opening an RFC to have all of these videos deleted.

Seventh (sheesh already): these files are uploaded by a COI, paid editor. I would like to see you, Doc James, not being involved in furthering the commercial interests of an external org and a paid editor, when their content has been demonstrably wrong on the two counts I have checked so far. You even installed this one, with errors, in the infobox of the article!

Here are some problems with this one, as a sample.

1. "Lose their memory and have difficulty learning new information ... " Misleading. See Dementia_with_Lewy_bodies#Essential_features. If they can't see what is wrong with that as the entry statement, they may be in the wrong business.
2. Irritating digression into real language on pathophysiology in a video otherwise aimed at middle-schoolers ... who's the audience?
3. "Early symptoms are ... " wrong. On several accounts (memory), but mostly because RBD can appear decades before other symptoms
4. "Sleep disorders like sleep walking or talking" ... relative to the extreme significance of REM sleep behavior disorder in DLB, again, if they can't describe that correctly, we should not see these files being spread across Wikipedia.

It is not up to me to suggest new wording for them: if they are in this business, it is up to them to stay up on sources. It is up to me, as a Wikipedia editor, to delete inaccurate external info from articles. Please show me a Wikipedia-wide discussion where consensus was gained on en.Wikipedia to add these files liberally to Wikipedia medical articles. We have 299 of these videos: the two I have looked at do not belong in articles. Wikipedia is not a vehicle for an external organization to promote its work; this needs to stop. This is Wikipedia being used for advertising for a non-reliable source that has products for sale. Doc James, I would ask you not to be involved in defending this COI when it involves inaccuracies that downgrade Wikipedia content. By defending the addition of demonstrably poor and commercial content in Wikipedia articles, you risk creating the impression that you are proxying for a disclosed, paid COI editor. SandyGeorgia (Talk) 14:43, 25 March 2018 (UTC)

Yes I agree it is slightly irritating but it is irritating as a mountain is being created out of a molehill. That people are making a large number of unfounded assumptions about what has occurred after not being around to any extent for a good number of years.

Your claim that 2 out of 4 core symptoms are completely missing is false. Yes your ideal wording has not been used. Sleep walking IS however a symptoms of DLB, so says Oxford among many other excellent and recent sources.[1] Sure it is not the only sleep disturbance during REM sleep but it is one of them and a classic one at that.

Presenting content in different formats in positive IMO rather than negative. Your claim that they are "aimed at schoolchildren" implies that we should not be. The "average" American reads at a 7th or 8th grade level per our Literacy in the United States[2] While this terminology is no longer officially used Wikipedia is written for the general public not post docs in the field in question. Additionally experts do not need us, as they already have access to excellent sources. I am against writing the leads of Wikipedia so that the general populous cannot understand it.

Per this "we do not even know who they are and how they are funded" you have not bothered to ask... You have raised concerns about the NIH sources from 2015. They are mostly still supported by the NIH sources from 2017. You have raised concerns about this source but have not provided factual errors just that it does not use your preferred language.

With respect to your concerns of COI, this is a red herring. No one abhors COI as much as I do, but this is not it. And your attempting to tar these efforts as COI makes those of use who deal with COIs job simple that much harder. Osmosis has not conflict of interest with respect to the topic of dementia with Lewy bodies. They do not manufacture a treatment for the condition in question. They are not paid by a PR agency or company that does. Your claim is like saying we should not use the Lancet as every time we do we are adding COI promoting the Lancet. Doc James (talk · contribs · email) 06:23, 27 March 2018 (UTC)

Differential diagnosis and other NIH info

PS, I am unsure how to sort out the mess that resulted in Wikipedia from no recognition of Parkinson's disease dementia or the Lewy body dementias (those articles did not even exist, nor did the concepts, before yesterday). I suspect-- but am not certain-- that the differential diagnosis for DLB should include Parkinson's disease as well as Parkinson's disease dementia. I don't know if that would be redundant? Also, nowhere do we mention that differential diagnosis has to rule out a number of things like syphillis, HIV, thyroid dysfunction, things which contribute to memory loss. I have not yet found a source for the other conditions that have to be ruled out ... would be most happy if someone with full access could. SandyGeorgia (Talk) 14:07, 22 March 2018 (UTC)

This NIH page is horribly unreadable on my browser. I am unable to find mention of differential diagnosis on that page, and it is used to cite differential diagnosis in the lead-- clue? SandyGeorgia (Talk) 14:13, 22 March 2018 (UTC)

Source says "The similarity of symptoms between DLB and Parkinson’s disease, and between DLB and Alzheimer’s disease, can often make it difficult for a doctor to make a definitive diagnosis."[3]Doc James (talk · contribs · email) 04:21, 24 March 2018 (UTC)

Neither does that source say the "cause is unknown", probably because that is a bit of an oversimplification, not entirely true. How can we fix that? SandyGeorgia (Talk) 14:15, 22 March 2018 (UTC)

Source says "Researchers don’t know exactly why alpha-synuclein accumulates into Lewy bodies or how Lewy bodies cause the symptoms of DLB, but they do know that alpha-synuclein accumulation is also linked to Parkinson's disease, multiple system atrophy, and several other disorders, which are referred to as the "synucleinopathies.""[4] Doc James (talk · contribs · email) 04:19, 24 March 2018 (UTC)

I have not yet started on Causes section. But in several places, this article is pointing at old, outdated government pages, which have been replaced by newer pages. The pages being used in the archived versions are BEFORE the new criteria were in place, resulting in errors. In this edit, you reinstated a pre-2017 consensus version of an NIH page. Will sort as I get into causes. The page the citation points at no longer exists, and has been replaced by updated info-- our article is pointing 14 times at a source that no longer exists, because it has been replaced, because everything in the field has changed. SandyGeorgia (Talk) 14:06, 24 March 2018 (UTC)

That site also downplays the genetics. The 8-year prognosis also needs to be checked versus newer information form more up-to-date sources; with the new understanding of the REM sleep behavior disorder predictability, DLB is detected earlier, and individuals are living longer. A source needs to be located for that. The NIH page is outdated on a number of issues. SandyGeorgia (Talk) 14:17, 22 March 2018 (UTC)

Infobox inaccuracies

Diagnostic method

Diagnostic method Based on symptoms after ruling out other conditions[4]

Not in that source, and not entirely correct. Please see new DLB Consensus on diagnostic criteria; there are now biomarkers and more concrete means of diagnosis (for example, REM sleep behavior disorder can be documented on polysomnography). SandyGeorgia (Talk) 14:22, 22 March 2018 (UTC)

Found one piece on a sub-page, that is incomplete: [5] I see no mention of polysomnography. Our lead is outdated in general because it relies on these outdated gov't sources. Will fix as I go. SandyGeorgia (Talk) 14:26, 22 March 2018 (UTC)

Ref says "There are no brain scans or medical tests that can definitively diagnose LBD."[6] I have not see a source that says this has changed. Yes REM sleep behavior disorder can be identified with polysomnography but that does not confirm this diagnosis. Doc James (talk · contribs · email) 04:31, 24 March 2018 (UTC)

I haven't figured out how to sort the fact (throughout the text) that the diagnosis is specified in the consensus as probable or possible, because it can only be confirmed on autopsy. I will leave this reminder here to run through the article when done to check for adjustments needed. SandyGeorgia (Talk) 06:52, 24 March 2018 (UTC)

@Doc James: There is a big problem throughout the article because outdated versions of government sources (NIH, etc) are being used to cite text, when NEWER versions of those government pages are available. The outdated versions, in every case, are from BEFORE the new 2017 consensus diagnostic criteria, while the newer versions, in every case, better reflect the new consensus. By using the outdated sources, we are introducing factual inaccuracies, which even the government has corrected!

We say: "A diagnosis may be suspected based on symptoms, with blood tests and medical imaging done to rule out other possible causes of the symptoms."

This is the May 17 2017 CURRENT version of the NIH Lewy Body Diagnosis page.

This is the September 2015 OUTDATED version of the same page.

The CURRENT version of this page never says testing is used to "rule out", because the NEW, 2017 consensus criteria relies on testing to "rule in" the possible or probable diagnosis.

The new criteria are that "Probable DLB can be diagnosed when dementia and at least two core features are present, or one core feature with at least one indicative biomarker is present". REM sleep behavior disorder (RBD) is a core feature. With one core feature (RBD) and one biomarker, the probably diagnosis would be entirely RULED IN by laboratory testing, not RULED OUT. RBD can be confirmed via imaging, e.g. polysomnography, and there are now three indicative biomarkers (testing that is used to establish the diagnosis). Our test is flat wrong.

Do you disagree with any of this? Why are you reverting back to old sources on items I had already corrected? I had addressed almost all of this, but you reinstated the old sources, so that I have now have to recheck everything again. Sorting this out took me an hour this morning, when I am still in the middle of trying to do a major update and upgrade to this article. SandyGeorgia (Talk) 14:56, 24 March 2018 (UTC)

If you update the source to a newer version also make sure you update the text.

The problem is if you change the source without changing the text than it appears that the text was unsupported.

I will go through and update to the most recent version. Doc James (talk · contribs · email) 22:13, 24 March 2018 (UTC)

other

In the lead, as well as many other places, this article is pointing at old, outdated government pages, which have been replaced by newer pages. The pages being used in the archive.old versions are BEFORE the new 2017 criteria were in place, resulting in significant errors. In this edit, Doc, you reinstated a pre-2017 diagnostic criteria version of an NIH page. The page the citation points at no longer exists, and has been replaced by updated info-- our article is pointing 14 times at this source that no longer exists, because it has been replaced, because everything in the field has changed since the 2017 consensus. I had already checked that the text pointed at by the NEW pages was correct, and now we're back to the outdated pages. The same thing occurs in this edit. SandyGeorgia (Talk) 14:14, 24 March 2018 (UTC)

Please create a new reference. Call it NIH2018 and than update it well making sure the ref actually still supports the text. I will update soon. Doc James (talk · contribs · email) 22:15, 24 March 2018 (UTC)

All fixed now,  Done. SandyGeorgia (Talk) 02:15, 25 March 2018 (UTC)

incidence

frequency = 0.1% (>65 years old) ref name=Dick2011/

The source restricts this data to Japan, and with qualifiers-- not a good source for this data. I have added other, more comprehensive epidemiology sources to the article, but someone with full access could find a better number and source for this infobox inaccuracy. It also needs to include an "as of" date, since the new consensus criteria improve diagnostic accuracy. SandyGeorgia (Talk) 14:48, 22 March 2018 (UTC)

Here is a decent 2016 review[7] Have updated. As a less studied condition not sure if there is prevalence during different years. Doc James (talk · contribs · email) 04:51, 24 March 2018 (UTC)

I will continue looking-- with the new criteria, this is likely to be a moving target. SandyGeorgia (Talk) 13:57, 24 March 2018 (UTC)

Found, done. PMID 26900156  Done SandyGeorgia (Talk) 02:56, 27 March 2018 (UTC)

Proposal

@Doc James: I have a proposal. Trying to edit the LEAD of an article when the article itself is outdated and underdeveloped, and forcing old archived citations into the lead to support outdated text, is creating a real time block for me, and doesn't make sense. Leads are summaries of articles.

How about if we, for now, a) update the archived citations to the current pages, so at least we are not pointing our readers at inaccurate info, then b) comment out for now unsourced text in the lead that will change as the article develops and I get full text of new sources, with the plan to c) revisit the commented out text in the lead once I have finished incorporating new text. Is that acceptable for you? Otherwise, I will continue to lose valuable editing time in tracking down these errors, particularly when they are reinstated after I have already fixed them once. I sorta thought I would be able to make a ton of progress today, but when old sources were reintroduced and I had to track that down set me back. SandyGeorgia (Talk) 16:45, 24 March 2018 (UTC)

I am happy to update the citations, I just need a couple of days before I will have time to do it.

Changing the citation to one that no longer supports the text in question does not make sense to me.

Leaving details in the lead supported by a source from 2015 rather than 2018 for a few more days IMO is not a big deal. Doc James (talk · contribs · email) 22:33, 24 March 2018 (UTC)

User:SandyGeorgia have updated all the refs to the most recent versions. Added quotes of the text I feel supports the content in question. Doc James (talk · contribs · email) 23:22, 24 March 2018 (UTC)

I will take a break now, and have a look at your work after dinner, but I am not sure you are understanding me. "Leaving details in the lead supported by a source from 2015 rather than 2018 for a few more days IMO is not a big deal." I am attempting to update the article, and the problem is, as I have pointed out in several sections above, there is inaccurate text in the lead, and in the infobox, because of the significant changes that the 2017 Consensus brought about. I don't mind waiting, but I don't want to make corrections that are then reverted to old, inaccurate text, cited to old sources. Example: it is no longer a diagnosis only based on history and ruling out other conditions. We now have biomarkers that can be used to "rule in" DLB. I will focus on other stuff for now, though. Is it OK with you if I shorten the talk page by archiving every section I have marked as "done"? SandyGeorgia (Talk) 00:13, 25 March 2018 (UTC)

Mostly fixed now, see extra notes below.  Done SandyGeorgia (Talk) 02:13, 25 March 2018 (UTC)

Much better

Working through changes now, with the addition of this source, things are much better, and your edits based on that source are a real improvement. (Happy to see my taxpayer dollars at work in the NIH book.)

Notes:

I can use that page to deal with Caregiving section (discussed below).

This source says:

• The disease lasts an average of 5 to 7 years from the time of diagnosis to death, but the time span can range from 2 to 20 years.

and our infobox says, 6 years, which is the 5-7 average. Now that DLB can be more easily diagnosed via polysomnography to discover REM sleep disorder, that "time span can range from 2 to 20 years" is likely to matter more. Telling our readers they have six years left is more pessimistic than the 2 to 20 reflects. Can you say instead, "About six years, but up to 20"?

wow, they have a pretty big copyediting problem in this section:

• No single test, such as a blood test, can be used to diagnose a frontotemporal disorder. A definitive diagnosis can be confirmed only by a genetic test in familial cases or a brain autopsy after a person dies. To diagnose a probable frontotemporal disorder in a living person, a doctor— usually a neurologist, psychiatrist, or ...

I think they forgot which page they were on :) This is Lewy body, not frontotemporal !

We still need to fix infobox on Diagnostic method:

• Diagnostic method Based on symptoms and physical exam after ruling out other conditions[2]

See discussion above. DLB can now be diagnosed based on polysomnography and one other biomarker-- that is, all objective lab testing, not only to rule out. SandyGeorgia (Talk) 02:13, 25 March 2018 (UTC)

Yes I think "About six years, but up to 20" is reasonable.

The ref says "probable DLB should not diagnosed based on bio-markers alone" and goes on to say "DLB is less likely in the presence of other physical illness or brain disorder..." IMO the last bit supports the rule out.[8]

How about "Based on symptoms and supported by specific biomakers"? Will split out the ruling out other stuff to a separate sentence Doc James (talk · contribs · email) 02:16, 25 March 2018 (UTC)

We are still not on the same page. REM sleep behavior disorder is a core feature (not a biomarker). It can be/usually is diagnosed via polysomnography (that is an objective lab test, done to rule in, not to rule out).

Probable DLB can be established with one core feature, and one biomarker.[9]

In other words, a person can be diagnosed entirely with objective lab tests (e.g. sleep study for REM as core feature, and scintigraphy, CT/MRI/SPECT/PET as biomarker). This infobox stuff is such a timesink. I don't know what you say for most conditions or diseases, but we now have lab tests to rule "in" as well as "out" DLB, not just based on symptoms or history. Your proposal is still not there. SandyGeorgia (Talk) 02:43, 25 March 2018 (UTC)

REM sleep behavior disorder is a core "clinical feature". This indicates it is a sign / symptom.

A positive polysomnography is a biomaker.

So yes with a symptom/sign (REM sleep behavior disorder) together with a biomarker "polysomnography" makes a probably diagnosis.

This is "Based on symptoms and supported by specific biomakers" IMO.

What wording are you proposing? Doc James (talk · contribs · email) 02:47, 25 March 2018 (UTC)

OK (because REM sleep disorder is both a core feature and a biomarker-- which is weird). This is a long example of why people hate infoboxes-- trying to summarize nuanced and complex topics down to a few words. I will cover it all the biomarkers better once I finish writing the Diagnosis --> Testing section, and if I come across better wording in the sources, we can revisit.. Thanks, still leaving a few things pending on this page, next I am tackling Differential diagnosis, Visual Hallucinations, and Treatment, leaving Pathophysiology and Causes for much later. SandyGeorgia (Talk) 02:57, 25 March 2018 (UTC)

Mental illness (psychiatric conditions)

So, we have the NIH sources mentioning some psychiatric conditions in the differential diagnosis, and we have that in the lead, but since I have not yet found in any source an idea of what those "certain" psychiatric conditions are, there is no mention in the body of the article. If we cannot find a high-quality secondary review that explains what these conditions are, so we can include it in the body, we might remove this vague wording from the lead. SandyGeorgia (Talk) 00:23, 26 March 2018 (UTC)

It's a good luck charm-- as soon as I mention something, I find it. PMID 28990131  Done SandyGeorgia (Talk) 01:09, 26 March 2018 (UTC)

Levodopa

I took levodopa out of the lead per Boot 2015 ... there are too many caveats and problems to have it floating in the lead with no explanation. I am still working on adding content, have not yet gotten to Treatment or finishing up of Signs & symptoms, or adding Classification, but I will cover levodopa in Treatment when I get to it. Almost out of time for today. See Boot 2015. SandyGeorgia (Talk) 21:28, 22 March 2018 (UTC)

Sure not unreasonable. Boots says "Their use is often limited because of their tendency to exacerbate the neuropsychiatric features of DLB [79–81]. Levodopa/carbidopa is most useful in patients with prominent parkinsonism and few or no neuropsychiatric symptoms." That sort of complexity is best dealt with in the body. Doc James (talk · contribs · email) 01:11, 24 March 2018 (UTC)

I am running out of steam for today, so may not get to that part until tomorrow. We can add things back to the lead if needed later ... I still have a lot of adding to do. SandyGeorgia (Talk) 01:48, 24 March 2018 (UTC)

 Done SandyGeorgia (Talk) 02:57, 27 March 2018 (UTC)

Vascular dementia, differential diagnosis

Missing, I have found nothing. SandyGeorgia (Talk) 00:39, 26 March 2018 (UTC)

Caregiving, uncited

I have spent hours trying to source this caregiving text. I've been through the article history, found some old citations that supposedly sourced the text (but didn't) searched the web, looked through the sources that were listed there--nothing. The text is good and helpful, I can find no problems with it, but I leave it there, someone will surely tag it someday as uncited. Not sure if I should remove it to talk, or just leave it there and see what happens. I could re-write it all from LBDA sources, but really? Isn't this the kind of info that people will go to advocacy orgs for anyway? Not sure what to do with all of this uncited, but helpful text. SandyGeorgia (Talk) 23:40, 24 March 2018 (UTC)

Some of it is, roughly, in this source.

• Ferman TJ (2007). "Behavioral Challenges in Dementia with Lewy Bodies, from 'The Many Faces of Lewy Body Dementia' series at Coral Springs Medical Center, FL". Lewy Body Dementia Association. Archived from the original on 2017-02-13. {{cite web}}: Unknown parameter |deadurl= ignored (|url-status= suggested) (help)

so one option would be to put that in External links and remove the text to talk. SandyGeorgia (Talk) 23:43, 24 March 2018 (UTC)

I will look into using the new NIHBook source for this section. SandyGeorgia (Talk) 02:16, 25 March 2018 (UTC)

Nothing there. SandyGeorgia (Talk) 06:12, 26 March 2018 (UTC)

Removed for discussion

It was hard to remove this text, because it is so helpful and quite well written. A number of factors went into my decision. Here is the diff where the text was added; apparently all from a youtube video of a Lewy Body Dementia Association conference. I suspected it was from that video, but it was also so well written, I was concerned to look for copyvio. In fact, it was inserted by someone with medical writing experience, so I doubt copyvio. I noticed that User:Garrondo commented on that editor's talk about the non-reliable source, but did not follow up. Another factor that worried me was that, although Celiakozlowski's writing was very competent and fluid, I noticed that she had created 60 pages, of which 42 were deleted. Another concern I have is the how-to factor. The final concern was that I found this:

There is little evidence for non-pharmaceutical approaches; more research is needed on early results for exercise to improve physical and cognitive performance. Education for caregivers has not been studied as thoroughly as in AD.

from secondary review sources <McKeithConsensus2017 and Velayudhan2017.

So, that makes me more uncomfortable about excerpts written from an 11-year=old youtube video. I am reluctantly removing this helpful text to talk, and will keep my eyes open for sources that can be used to replace it. I am instead placing the video in the External links, since it was uploaded by the LBDA, so is not a copyvio, and was a speech given by a well-published DLB researcher. If anyone comes across a reliable secondary source for caregiving specific to DLB, please post. SandyGeorgia (Talk) 06:12, 26 March 2018 (UTC)

DLB gradually renders people incapable of tending to their own needs, so caregiving is important and must be managed carefully over the course of the disease. Caring for people with DLB involves adapting the home environment, schedule, activities, and communications to accommodate declining cognitive skills and parkinsonian symptoms.

People with DLB may swing dramatically between good days, with high alertness and few cognitive or movement problems, and bad days, and the level of care they require thus may vary widely and unpredictably. Sharp changes in behavior may be due to the day-to-day variability of DLB, but they also may be triggered by changes in the schedule or home environment, or by physical problems, such as constipation, dehydration, bladder infection, injuries from falls, and other problems they may not be able to convey to caregivers. Potential physical problems always should be taken into consideration when an individual with DLB becomes agitated.

As hallucinations and delusions are not necessarily dangerous or troubling to the person with DLB, caregivers not disabusing patients of them may be best. Often, the best approach is benign neglect—acknowledging, but not encouraging or agreeing. Trying to talk the DLB patient out of his delusion may be frustrating to caregivers and discouraging to patients, sometimes provoking anger or dejection. When misperceptions, hallucinations, and the behaviors stemming from these become troublesome, caregivers should try to identify and eliminate environmental triggers, and perhaps, offer cues or "therapeutic white lies" to steer patients out of trouble.

Similarly, I could not find any of this in the cited source.

Changes in the schedule or environment, delusions, hallucinations, misperceptions, and sleep problems also may trigger behavior changes. It can help people with DLB to encourage exercise, simplify the visual environment, stick to a routine, and avoid asking too much (or too little) of them. Speaking slowly and sticking to essential information improves communication. The potential for visual misperception and hallucinations, in addition to the risk of abrupt and dramatic swings in cognition and motor impairment, should put families on alert to the dangers of driving with DLB.

Sources

• PMID 21592320 has coping strategies. SandyGeorgia (Talk) 17:08, 26 March 2018 (UTC)

References

Predictive value of REM sleep behavior disorder (RBD)

This lay source (non-MEDRS) has some striking statements, made by the leading researchers in the field. The article explains in lay language the significance of RBD, and why this article is so outdated (working on it, several more days of work to go still). In particular:

Most of the subjects (83%) were men. Eighty-two were diagnosed with RBD by polysomnography, the gold-standard; 98% of the PSG-confirmed cases had a synucleinopathy at autopsy, Dr. Boeve noted.

The remainder had been diagnosed by history, which "can really be quite good" so long as sleep apnea and other confounders are kept in mind, said Dr. Postuma, who was not involved in the project.

The take-home message is that "if you have a patient with a neurodegenerative disorder in front of you, if the patient doesn’t have RBD and that patient is demented, the chances are [that they don’t] have [Lewy body dementia]. In contrast, if you have a pretty good history of RBD but don’t have a PSG [polysomnography] to confirm it, there’s a 94% chance that you have a synucleinopathy. If you do have PSG, there’s a 98% chance of having a synucleinopathy," Dr. Postuma said.

So, that is powerful stuff, and explains why there is now consensus to consider RBD a core feature. Can anyone with access to full text of journal articles find a secondary review to substantiate these high numbers? It is easy to find numbers on people with synucleinopathy that had RBD-- I am looking for secondary sources on the other direction-- proof on autopsy of people with RBD that progress to synucleinopathy, which this source is saying is 98% when confirmed on sleep study. SandyGeorgia (Talk) 16:48, 22 March 2018 (UTC)

Found. Boot 2015, "When confirmed by polysomnography, rapid eye movement sleep behavior disorder is 98 % specific to the disorders of synuclein." "Rapid eye movement sleep behavior disorder is highly specific (98 %) to the synucleinopathies." SandyGeorgia (Talk) 03:21, 23 March 2018 (UTC)

The synucleinopathies include "Parkinson's disease, multiple system atrophy, and several other disorders"[10] so while useful for the group it does not specify one of them. Doc James (talk · contribs · email) 04:27, 24 March 2018 (UTC)

Yes, but some of the other reviews talk about what percentage of each-- I haven't even started writing the RBD section yet, but will get to that. SandyGeorgia (Talk) 06:53, 24 March 2018 (UTC)

Supportive clinical features

McKeith et al Consensus lists 13 supportive clinical features, of which depression is one. It is not a core feature. I removed depression from the lead; it was added back. Why? If we are going to list a supportive feature, why that one in particular? As opposed to all 13. Neuroleptic sensitivity is the most important supportive feature for the lead because of the risk (mortality and irreversible side effects)-- but why depression as contrasted with incontinence, autonomic dysfunction, hypersomnia, hyposmia, constipation, apathy, anxiety, etc? SandyGeorgia (Talk) 20:50, 22 March 2018 (UTC)

I guess we could mention more. Have added urinary incontinence. Bunch listed here aswell.

We could also leave all of them out if you feel strongly.Doc James (talk · contribs · email) 01:28, 24 March 2018 (UTC)

I think we should wait until I get through all the literature ... I just found (and added) a stat citing 59% for depression, so that might make it worth leaving in the lead. Will be better able to make decisions on lead after I get through 6 more journal articles! SandyGeorgia (Talk) 01:51, 24 March 2018 (UTC)

Changing citation style

Reminder to self; this introduces an inconsistent citation style (which, for example, will not get past WP:WIAFA). Deal with those folks again when I have time. SandyGeorgia (Talk) 15:37, 26 March 2018 (UTC)

converted to manual citation to avoid citation inconsistency problem introduced by citation template.  Done SandyGeorgia (Talk) 16:17, 26 March 2018 (UTC)

@SandyGeorgia: {{cite book}} does support |veditors=, hence one could replace "|editor1= Fisher A|editor2=Hanin I|editor3=Yoshinda M" with "veditors = Fisher A, Hanin I, Yoshinda M" which will preserve the editor citation style while still using the template. Just a suggestion. Boghog (talk) 06:12, 7 April 2018 (UTC)

References

@Boghog: you're still the best! I think I got everything, but you might want to recheck now. Best regards, SandyGeorgia (Talk) 18:02, 7 April 2018 (UTC)