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 When delusions turn on the caregiver 
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Joined: Fri Jul 26, 2013 4:29 pm
Posts: 15
Post When delusions turn on the caregiver
My 91 year old mom was diagnosed with LBD two months ago although we now recognize her symptoms have been present for years. After a series of falls with fractures, and her being up all night for several nights in a week, we decided to place her in a memory care nursing home. Her delusions and hallucinations have been getting worse since then. We tried one on one care givers in our home and at the nursing home as well, but she has rejected all of them at home or at the facility. Now she thinks almost everyone is our to get her. In the last two days she now thinks that I am trying to kill her. She used to have delusions where I apparently saved her from unbelievable events. She thinks the staff is trying to drug her. Has anyone had success in turning these kinds of delusions around, particularly when the caregiver is feared by the patient? I don't know how to gain her trust back.


Sun Jul 28, 2013 8:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3362
Location: Vermont
Post Re: When delusions turn on the caregiver
Hello - is your mom being given any drugs to help wit the dementia symptoms? Has she had a change in meds that could have negatively affected her? Unfortunately, there may be nothing you can do, but if her dr. is unaware of her symptoms or hasn't done anything yet, perhaps you can contact the dr. and let them know what's going on and see if you can get some help. Or, perhaps get her to another dr. if the present one isn't trying something to help her. Good luck and let us know if you have found anything that helps. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Jul 28, 2013 9:24 pm
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Joined: Fri Jul 26, 2013 4:29 pm
Posts: 15
Post Re: When delusions turn on the caregiver
Hello LTCVT,

Thank you your helpful reply. My mom has been given the Exelon patch, which she has been wearing now for three weeks. Two weeks ago she started remeron to help with anxiety. We have scheduled a new nuerologist for this thursday for more advice. This is actually the third nuerologist we have tried. We will let you know if we find something that works. All thoughts and advice are appreciated.


Mon Jul 29, 2013 12:00 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: When delusions turn on the caregiver
We found Seroquel worked better than anything else. You have to start with a very low dose.

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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.


Mon Jul 29, 2013 3:52 pm
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Joined: Fri Jul 26, 2013 4:29 pm
Posts: 15
Post Re: When delusions turn on the caregiver
Thank you, mockturtle. My mom's primary is considering Seroquel but will first consult with a neurologist. I am a bit cautious about it given the warnings on the prescription regarding seniors with dementia. But we may give it a go at a very low dose. She is getting much worse so I think something needs to change.


Wed Jul 31, 2013 2:17 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: When delusions turn on the caregiver
I realize I'm late to this discussion but may have some reassuring words on seroquel.

We had to prescribe something to handle my mother's delusions which, like your mother's, were frightening to her (although she was not violent.) She thought the building was on fire (every few days), I had been carjacked on the 10-min drive to my house (about once a week), my grandson was kidnapped, you name it. The neurologist suggested a low dose of seroquel/ quetiapine. Her PCP was edgy because the FDA came out with its warning about seroquel and other atypical antipsychotics for the elderly that very week.

I pulled the medical literature (I'm a senior professor in a med school and have been doing dementia research for 25+ years so I know what I'm doing with lit reviews.) My conclusion was that the risk was something like a 30-50% increase in risk of cardiovascular events, maximum, over the next 5 years, for an older person on a very high dose of seroquel, about 10-20x what we were going to try. I told her PCP that my mother was 95 (at that time) and had a terminal dementia diagnosis, and that as far as I was concerned, a 5-10% increase in risk of heart attack before she turned 100 was the least of our worries. She was suffering far more from the delusions and the anxiety they created. So we started her on seroquel, 12.5 mg morning and evening. Boom, no more delusions, much happier. Since then we have had to increase the dose twice, once about six months ago and once a couple of weeks ago. She is now on a total of 100 mg/day, and doing ok, at least wrt delusions.

So I think a trial of low-dose seroquel is entirely warranted. If it helps, your mother will be much happier and the caregivers much safer, and it will be easier for them to keep her safer and more comfortable. It's unlikely to have any side effects at a low dosage (the typical starting dose is 12.5 or 25 mg, 2x per day). And at least for us, the very slight long-term increased risk of heart attack or stroke was not sufficient to forego the therapeutic effect. If it doesn't work, you haven't lost anything except maybe a month or two of trial (I'd try a higher dose before trying a different med, unless she shows major side effects.)

Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Wed Aug 07, 2013 4:28 pm
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