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 Help! New member with painful delusions. 
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Joined: Fri Apr 13, 2007 11:44 pm
Posts: 5
Post Help! New member with painful delusions.
Our mother has suffered for about two years with what we now understand is LBD. She is 91. The first features were depression and a decline in her skills. In the last six months there has been obvious delusional thinking, and a hospitalization with ECT. Attempts at med treatment made things worse, as we now understand is common with this. She lives with dad in a nice assisted living apartment.

Right now she is two weeks into Namenda, Celexa, and Klonopin. There is so much up and down, it is hard to say we are doing much, though she was worse with a variety of antipsychotics.

We have stepped up her care so that she gets help three times a day, all meals, meds and bathing. Monday I will be setting up a companion for the afternoons, so dad gets a break.

The most painful thing is that all her bad thoughts have to do with this illness being her fault, knowing she has given it to her family, and predicting devastating events for her family. She believes she has cancer, her doctor will lose his job, someone will take all their money, she has murdered her family, and most often, her husband has died.

It is impossible to just go along with delusions of this sort. And impossible to steer her away from this aggitated thinking.

Any suggestions? Thank you for being here.

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jasmine


Sat Apr 14, 2007 7:02 am
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Post Re: Help! New member with painful delusions.
gdowbhill wrote:
Our mother has suffered for about two years with what we now understand is LBD. She is 91. The first features were depression and a decline in her skills. In the last six months there has been obvious delusional thinking, and a hospitalization with ECT. Attempts at med treatment made things worse, as we now understand is common with this. She lives with dad in a nice assisted living apartment.

Right now she is two weeks into Namenda, Celexa, and Klonopin. There is so much up and down, it is hard to say we are doing much, though she was worse with a variety of antipsychotics.

We have stepped up her care so that she gets help three times a day, all meals, meds and bathing. Monday I will be setting up a companion for the afternoons, so dad gets a break.

The most painful thing is that all her bad thoughts have to do with this illness being her fault, knowing she has given it to her family, and predicting devastating events for her family. She believes she has cancer, her doctor will lose his job, someone will take all their money, she has murdered her family, and most often, her husband has died.

It is impossible to just go along with delusions of this sort. And impossible to steer her away from this aggitated thinking.

Any suggestions? Thank you for being here.



Hi Jasmine,
Welcome, I am glad you found the forums, Seems like you Mother is getting good care and seems like the right meds and there really isn't much you can do with the delusions except more meds and if she is not violent at this point I would keep the way she is with her meds, they often create other problems, Redirection and assurance that you are all alright and that she couldn't possibly give this illness to any of you is about the best that can be done, always let her know you understand her dulusions but to you they are not real, Let her know there is no way that she could have brought this illness on herself and can I ask how Cancer became the thought of her illess? I do wish you well and I can tell you this in time will pass :!:


Sat Apr 14, 2007 8:39 am

Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
Post 
Jasmine:

Eeep! Persecutorial delusions are miserable, and they are so heart-rending.

It's curious that your mother isn't taking a cholinesterase inhibitor (ChEI, such as Aricept/Razadyne/Exelon). These are sort of the mainstay of DLB therapy. They work to preserve levels of acetylcholine in the brain, which is good, because acetylcholine deficit drives this disease far more than generalized cell death (like in AD). The other agents are very useful adjuncts to the ChEIs.

The ChEIs are generally well-tolerated in LBD and are compatible with the other things your mother is taking. The keys to minimizing the side effects:

1) Don't rush going from the starting dose to the optimal dose if there are GI side effects (nausea, vomiting, loose stools/diarrhea). Let the lack of side effects drive the dose adjustment, not the calendar.

2) Watch the recommended food consumption with the doses carefully - Exelon is pickier than the other two. If you search for "oatmeal" using the search link at the top of the page, you will find a post of mine talking about how much food is needed to count as a "meal or heavy snack" in the minds of drug companies.

Personally, in Cal, we found the delusions looked a lot like being unable to tell the difference between dream state and wake state events, and have had exceptional results with psychostimulants (drugs like amphetamine and Provigil). A relatively low dose, first thing in the morning, and we don't hear about people stealing his pants or that he's in trouble for something. Ding! Perfection. It's worth discussing with your mom's doctor.

To guide that discussion, here's an excellent reference encompassing the state-of-the-art in DLB treatment:

http://www.lewybodydementia.org/Boevelink.php

This is written by one of the leading authorities on DLB treatment, who is also a member of the LBDA's Scientific Advisory Council. It's dense and chewy and packed with informative goodness - it's the Snickers bar of medical information.

Feel free to ask lots of questions; we're all living with this in different ways, and there's lots of approaches. For us, the difference between "pretty good" (atypical antipsychotic and antidepressant therapy) and "optimized" (ChEI, psychostimulant, atypical and supplements) has been *night and day*.

Eric

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Sat Apr 14, 2007 2:38 pm
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Joined: Fri Apr 13, 2007 11:44 pm
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Post 
Thank you so much for responding. I printed out the charts on meds in your link to bring to my mom's doctor's appointment. She has a good internist who is one of my partners (I am a family doc) and he is open to anything.

She took Aricept way back, had nausea and her dementia wasn't bad enough that we could see any effect, so we stopped it. It sounds like we should try it again.

Since she is little and 91, her tolerance for meds is poor. Does it seem that even low doses are worth something?

She has only been on her present meds three weeks. Sleepy at times, but no nausea. Should we wait til her Namenda is full dose before adding back the Aricept?

Maybe the data that show the two dementia drugs work better together comes from the fact that the clinical studies poorly separate AD and LBD????

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jasmine


Sat Apr 14, 2007 7:42 pm
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Shhhhh. You may have uncovered a dirty little secret....

You'll note that *NONE* of the currently-approved AD drugs have done much to screen out DLB patients in their trials.... So while the class effect is modest and they got an approval...

Well, let's go back. Before the beta-amyloid theory or the tau protein theory of AD, the operating assumption was "acetylcholine deficit"....hence, Cognex/Tacrine, which was miserably poorly tolerated and notoriously ineffective. Now that we've got better diagnostic methods that can distinguish DLB from AD, it's obvious that in some people, acetylcholine deficit really is driving their dementia, and, better still, it's treatable.

So yeah, it's entirely possible that the average effect in "AD" is really a function of maybe 5, 10, 15, 20, 25% of these "AD" patients really having something else entirely, like LBVAD or just plain old DLB.....

If she had problems with Aricept before, is it possible that the titration schedule was too aggressive? Until recently the recommendation was a week at 5 mg, then moving 10 mg. This is too darned fast. The new label recommendation is 28 days at 5, then the switch to 10. What we did with Cal was watch carefully for GI side effects, and seeing none at 5 after two weeks, tried 7.5 for two weeks before moving to 10. It does require a little tablet-splitting, but it's worth it

The other two are still worth considering. Of note, Exelon is specifically approved in Parkinson's Disease Dementia. Exelon patches are also "coming soon", which seems to reduce the GI side effects pretty markedly (32 mg/day patch GI side f/x equal to placebo).

For the stimulant dose, we use 5mg of dextroamphetamine and 100 mg of modafinil. We've tried doses from 5-10 on the amphetamine, and 50-150 on the modafinil, and we think we're on the right course where we are. I'd say we saw the effect in two days when we had it right.

As for the antipsychotics . . .people claim the best results with low-dose Seroquel. We've had *excellent* results with Zyprexa, but others report more movement problems. Before the stimulants, we were using 5 mg per day (1.25 morning and afternoon, 2.5mg bedtime). After, we're using 7.5 (2.5 morning, 1.25 afternoon, 3.75 bedtime) and that's working PERFECTLY. I'm almost kicking myself for saying that - it's like asking for the phone to ring with drama.

Eric

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Sat Apr 14, 2007 8:05 pm
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Joined: Tue Mar 20, 2007 4:37 pm
Posts: 13
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hi eric sea we have not spoke before dont no how to ccontact you privatley but just to let you no i have scrolled right back to when you joined and have got a lot of hope and answers from your posts you seem to be very well educated and your knolege is so inspiring thanks for every thing one day at a time


Sat Apr 14, 2007 8:16 pm
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Joined: Fri Apr 13, 2007 11:44 pm
Posts: 5
Post a tough day....
On Monday I had to move my Mother out of assisted living because of continued behavior deterioration. He delusions are increasingly violent as are her behaviors.

Fortunately the care home she was in last fall could take her back. The owner takes up to five people, and is endlessly patient with my Mom, but in spite of this she has been even worse since arrival.

Today my Dad (97yo) decided he could walk to see her and was lost for about 2 hours. Eventually he returned and was at the point of collapse. He seems ok and was willing to accept the wanderguard.

For now we are going to double her Klonipin and the prn Ativan. What are your experiences with behavior after a move?

Thanks

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jasmine


Thu Apr 19, 2007 7:15 pm
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Dear Jasmine,
People with LBD have trouble grasping things in the everyday normal, so I think it is safe to assume a life move such as your Mother has just gone through will effect her, lets just hope she settles in a few days! :) We moved into our current house just 4 weeks before my Husband passed and I don't think he ever adjusted to his new surrounding but the reason for the move was because he was in such bad shape and the hope that I would have more help.


Thu Apr 19, 2007 7:24 pm

Joined: Thu Apr 19, 2007 4:02 pm
Posts: 5
Location: Irving, Texas (DFW area)
Post Best To Listen But Not Process
I have found by experience with my husband (LBD sufferer for around 8 years) that the best thing to do with his wild imaginations is to listen to them but then immediately try to divert his attention. In many ways he is like a small child that needs to be directed to something else to stop his crying or fussiness.

I realize that sounds elementary, but many times I find that to divert his attention to anything, even if he later goes back to his delusions, is best for him. He seems to spend less time dwelling on things that are plainly delusional if I don't dwell on them either.

Good diversions: chocolate candy (his doctor says he can have all he wants) and taking him for a stroll in his wheelchair. He loves planting plants, visiting with his kids, talking on the phone to them, making cards if he can and watching car races. Anything too long, such as a long TV program, is too much. LISTENING to him, even if you can't understand him, is often better than talking to him, as long as he is positive. Joking is great, especially if the joke is on you!

Bad choices: interaction with too many people or too difficult tasks for him to complete.


Sat Apr 21, 2007 8:43 pm
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Joined: Fri Apr 13, 2007 11:44 pm
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Thanks for the ideas. Mom is back in the hospital and now we are trying neurontin and zyprexa...very small doses. A new psychiatrist saw her, and maybe something totally different will help. It remains to be seen where she can go after this.

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jasmine


Sat Apr 21, 2007 11:42 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: a tough day....
Your first post: "Our mother has suffered for about two years with what we now understand is LBD. She is 91. The first features were depression and a decline in her skills. In the last six months there has been obvious delusional thinking, and a hospitalization with ECT. Attempts at med treatment made things worse, as we now understand is common with this.

Right now she is two weeks into Namenda, Celexa, and Klonopin. There is so much up and down, it is hard to say we are doing much, though she was worse with a variety of antipsychotics."

Your second post: "...She took Aricept way back, had nausea and her dementia wasn't bad enough that we could see any effect, so we stopped it. It sounds like we should try it again.

Since she is little and 91, her tolerance for meds is poor. Does it seem that even low doses are worth something?

She has only been on her present meds three weeks. Sleepy at times, but no nausea. Should we wait til her Namenda is full dose before adding back the Aricept?"

Your third post: "On Monday I had to move my Mother out of assisted living because of continued behavior deterioration. He delusions are increasingly violent as are her behaviors....

For now we are going to double her Klonipin and the prn Ativan..."

Your fourth post: "...Mom is back in the hospital and now we are trying neurontin and zyprexa...very small doses. A new psychiatrist saw her, and maybe something totally different will help..."

Jasmine,
This seems like a lot of med changes in the span of 3 weeks. I think it's best if ONE MD titrate her meds with family involvement/oversight and caregiver input. Do the Zyprexa and Ativan PRN conflict? Have you read the warnings on Zyprexa? Have you read the studies on Namenda? Do her MMSE scores fall in line with what Namenda is good for, based on the drug company studies?
Good luck,
Robin


Sun Apr 22, 2007 1:03 am
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Post Re: a tough day....
Jasmine wrote:
Attempts at med treatment made things worse, as we now understand is common with this.

Robin is correct in the time span for all these med changes,
Zyprexa is a drug that needs much caution in its use for LBD, it has been known to cause problems with some,people.
I do hope they are able to get her meds straight and not have to keep making changes, it will become hard to tell what is causing the problems, either the illness or the drugs! :roll:


Sun Apr 22, 2007 6:18 pm

Joined: Fri Apr 13, 2007 11:44 pm
Posts: 5
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My Mom has now had 5 ECT treatments and her psychosis is almost resolved. There have been no new meds in almost 3 weeks. Only the Zyprexa has been increased. Her meds are Aricept 5mg in the am, Klonopin .25 pm, Zyprexa 10mg pm and Neurontin 100mg twice a day. She seems to have a knowledgable psychiatrist. She varies from alert to sedated, and I think we have to have some distance from the ECT to see if there is any pattern to this.

We have a nice cottage with 12 residents with dementia, where she will go later this week. The nurse there has 6 years of dementia experience and seems to know LBD.

Let's hope for some stability....I know it won't last forever, but we need a break.

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jasmine


Sun May 06, 2007 10:44 am
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
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Good evening everyone.

I have just read Eric's message on Exelon, which PE takes twice a day. But he also mentioned Parkinson's dementia. Is this different from LBD? PE sees the neurologist tomorrow and an answer would be so helpful for me. I h ave to sit in her tiny windowless waiting room while she performs the usual tests.

I have the feeling she just doesn't want to hear what I would like to tell her about the different modes of lucidity in the morning and evening! Perhaps I can slip in a reply to her questions about help that what I really need is a genie in a bottle who would appear every time I needed it!

Do doctors and specialists nowadays mind if you mention some information you obtained (like on this site) from a reliable medical web site?

Thanks from Dinny


Mon May 14, 2007 11:48 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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PDD and LBD are two disorders on a spectrum. If you have dementia within a year of PD symptoms, it's called LBD. If dementia doesn't occur until years after having PD symptoms, it's called PDD. (If you have PD and live long enough, there's a good chance you'll get PDD.)

I think that the LBD brain and the PDD brain cannot be distinguished at autopsy. Both are called DLB.


Mon May 14, 2007 4:00 pm
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