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 Extremely aggressive behaviour 
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Joined: Mon Apr 08, 2013 9:37 pm
Posts: 7
Location: Oxfordshire, UK
Post Extremely aggressive behaviour
Hi,
My 75 year old dad had to be taken from home with my mum, as she could no longer manage his constant wandering and increasing agitation around strangers. He had to be restrained during his 20 min ambulance ride to the specialist unit, but seemed to calm down there. However, during the 6 weeks there he got increasingly agitated and become violent during personal care attempts. Due to poor care at this unit we found somewhere private to take him, but after 10 days they asked for him to be removed due to his extreme violence. After a very difficult period at home, he is now in another private nursing home, but it looks like they might also be changing their minds this week, after an amazing catalogue of incidents, particularly associated with personal care. He is bruised and battered from the restraints and rough handling, and both carers and other users are at risk of violence. We are trying to persuade the doctors to investigate any physical reasons for his distress (UTI, etc) but this is not forthcoming.
Has anyone else had to deal with a LBD relative with such ongoing aggression? Is there nothing that can be given to someone like this to calm them down?
I can't help but think there is only so much of this trauma an elderly body can put up with?
He really does seem to be the only one like this that the local mental health team has ever had to deal with.

_________________
Daughter of 75 yo Dad diagnosed with DLB in 2011 but suffering serious symptoms since 2009, and minor symptoms much longer, currently in private nursing home, after being removed from home with wife of 40 years Feb 2013, due to complex behavioural issues.


Thu Apr 11, 2013 10:05 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Extremely aggressive behaviour
Our experience has been similar [expelled from a nursing home for behavior and violent behavior at home] but Seroquel [quetiapine] helped immensely. There have been much fewer incidents of violence against me and against caregivers at the nursing home. It is an unfortunate fact that behavior like this must be controlled with medications. There are care facilities in our area that refuse to take LBD patients due to behavior and liability. It is important, however, to make sure your father is not suffering from some kind of infection, like a UTI, which can sometimes cause behavioral problems. See what his neurologist recommends. There are so many behavior-modifying medications that are dangerous in LBD that it is vital to use the right ones. Let us know how things are going. We care!

_________________
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.


Thu Apr 11, 2013 10:28 am
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Joined: Mon Apr 08, 2013 9:37 pm
Posts: 7
Location: Oxfordshire, UK
Post Re: Extremely aggressive behaviour
Hmm, I have read some not so good reports about seroquel? Such as risk of stroke and cognitive loss (for what that's worth!)

_________________
Daughter of 75 yo Dad diagnosed with DLB in 2011 but suffering serious symptoms since 2009, and minor symptoms much longer, currently in private nursing home, after being removed from home with wife of 40 years Feb 2013, due to complex behavioural issues.


Thu Apr 11, 2013 12:42 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Extremely aggressive behaviour
My husband's neurologist considers Seroquel to be the safest neuroleptic for LBD/PDD. It must be started at a very low dosage in the elderly but we have seen no bad side effects in the three years he has been taking it. There is no question that they would not be able to keep him at the SNF otherwise. Everything is a trade-off. My husband's PD meds increase his hallucinations and his Exelon patch probably has some antagonistic effect on his PD and we were explained all that when he was started on them many years ago. But the positive effects greatly outweigh the negative.

_________________
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.


Thu Apr 11, 2013 2:16 pm
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Joined: Mon Apr 08, 2013 9:37 pm
Posts: 7
Location: Oxfordshire, UK
Post Re: Extremely aggressive behaviour
Dad was on rivastigmine patches and the psychiatrist decided to remove that a week ago to see if it was just too much stimulation for a far gone brain. Has made no difference to his behaviour. I have suggested seroquel to my mum today. Drs have steered well clear of antipsychotics to date, so maybe we need to start mentioning them.

_________________
Daughter of 75 yo Dad diagnosed with DLB in 2011 but suffering serious symptoms since 2009, and minor symptoms much longer, currently in private nursing home, after being removed from home with wife of 40 years Feb 2013, due to complex behavioural issues.


Thu Apr 11, 2013 2:49 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Extremely aggressive behaviour
Just make sure they are well aware of the drugs to avoid. I think those can be found on the LBDA web site. Anything that is strongly anticholinergic is bad for PD/LBD and some antipsychotics can cause neuroleptic malignant syndrome.

_________________
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.


Thu Apr 11, 2013 3:19 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 744
Location: LA
Post Re: Extremely aggressive behaviour
I cared for my husband and when his control became imposible, the Seroquel helped immensely. Yes, what Pat said as in, "Start low and go slow" has helped many and may be helpful for your problem. I continued to used the Exelon patch right up to the end also not knowing if it helped or not but I was able to keep things fairly under control and at times, he was quite lucid enough for us to have close contact at times. I treasure those moments.

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Thu Apr 11, 2013 3:59 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Extremely aggressive behaviour
My dad was on Seroquel to reduce his aggitation, but I was never quite sure if it was helping or not.

Has anyone dealt with this? Sort of - A friend of mine's dad, who was only in his early 60s, became extremely violent and had to be moved from home to the best/most expensive memory care place near here. Nothing worked for him. He would be the ALF for a few weeks, then have to go to the hospital and be super-medicated as it was the ONLY way to stop the violent behavior. This went on for about 3 months, then his physical health declined rapidly, the family was told to put him in hospice and he died within the week. It was the most intense case of LBD I've heard of. He had HUGE declines in his last few months.

You just never know with this terrible disease. I hope your dad can get some help with meds. 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.


Thu Apr 11, 2013 8:25 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Extremely aggressive behaviour
The FDA's initial report on seroquel was based on higher doses, and even then, the added risk was relatively modest (40-50% greater risk at most, for very high doses, which means that a relatively low risk went up to still relatively low.) And they are calculating risk over the next 5 years. The risk is dose-dependent so at the lower doses, it is really a very small increase. I read all the literature when we were considering putting my mom on seroquel and concluded that for her, given the dose we were talking about, it might be a 5% increase in risk over 5 years, and she was 95 at that point and suffering far more from the delusions than she would from the remote possibility of an otherwise unexpected cardiovascular event. Our PCP and neurologist agreed, and even the FDA has backed off somewhat from their initial warnings.

So I would talk to your neurologist and PCP and see what they say. But (my reading of the literature, and I do this sort of quantitative evaluation of medical literature professionally) unless there are already a lot of risk factors (e.g. smoking, history of bad hypertension, etc.) or it takes a whopping dose to improve his status, it is not likely to increase his risk materially. (This is of course a statement "on average" but from what we know now, the risks at low doses for people not already at high risk from other stuff are relatively modest.)

Hope that helps a little - we were lucky that my mother's problems led more to anxiety and never to violence. He must be suffering greatly from his fears and anger, poor guy.
Good luck - and much sympathy -
Laurel

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


Fri Apr 12, 2013 1:21 am
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Joined: Mon Apr 08, 2013 9:37 pm
Posts: 7
Location: Oxfordshire, UK
Post Re: Extremely aggressive behaviour
What a terrible illness. My dad was the sweetest, gentlest person and very polite and intellectual. It's almost as if he's used up all the good sides of his brain and is left with the underused horrible bits. Yes, he must be suffering a lot, but to be honest, I can't remember the last time he was happy in the past 2-3 years. Not a life worth living right now. We're desperate to put him in a more comfortable place in his mind.
I will try and speak directly to the dr about seroquel, as my mother finds it hard to take the lead with them.

_________________
Daughter of 75 yo Dad diagnosed with DLB in 2011 but suffering serious symptoms since 2009, and minor symptoms much longer, currently in private nursing home, after being removed from home with wife of 40 years Feb 2013, due to complex behavioural issues.


Fri Apr 12, 2013 2:48 am
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