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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: 781
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", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Thu Apr 11, 2013 3:59 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
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: 248
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

_________________
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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Joined: Fri Jul 04, 2014 2:58 pm
Posts: 3
Post Re: Extremely aggressive behaviour
Hi,

My sisters and I are in the process of committing my 74-year-old dad to a nursing home and we expect him to be an extremely violent, aggressive patient. He was verbally and physically abusive and antisocial before he had the disease, and all of his lovely personality traits have been emphasized by it. He is paranoid, hypercontrolling, and has threatened the doctors who diagnosed him, as well as everyone who visits the home to speak with him, with physical violence.

Right now he lives with my mother, who is of course very fearful of him as she has always been. Luckily, he is also incontinent, suffering from some physical Parkinson's symptoms which keep him from being able to read, drive or dial the telephone, and in general not usually 'with it' enough to be a threat at this point (we hope). We are about to get guardianship of him and expect to have him committed somewhere within the month.

We are concerned, of course, about him being continually 'thrown out' of home after home. He has tried a few different medications but because he is so doctor resistant and paranoid, and our mother so afraid of him she is unable to take him to appointments, we have not been able to have him seen by a psychiatrist, and though his neurologist tried a few meds on him, my mother became afraid to try any new ones after he became hypertalkative and hypersexual.

Are there any nursing homes that can handle someone like him that is nearly constantly angry and paranoid and violent? I would guess that part of the key to having him installed in a home that can handle him would be finding the right drugs, but unfortunately my mother cannot (and should not have to!) handle having him try them out while he lives with her. Does anyone who has been in this situation have a recommendation for how to find a doctor that can prescribe them for him once he is in the home? We are in the Baltimore area. I haven't been able to find a Lewy-body specific psychiatrist or neurologist in the area.

Though we all want to see him treated humanely and would hope that he finds a treatment and facility that make his last years (or perhaps months at this point) more comfortable, we are much more concerned with making sure he does not hurt anyone than we are with prolonging his life at this point ... has anyone been in this situation, and if so, what kind of doctor did you use, how did you keep your Lewy Body person from being thrown out of facilities, etc.???

Thanks in advance for any replies.


Tue Dec 23, 2014 3:35 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Extremely aggressive behaviour
Hi - I know of a family whose LO lived on the Eastern Shore and after getting kicked out of various facilities there because of violent behavior he was placed somewhere in or around Annapolis. I don't know which facility though, sorry.

Had I been able to transport my dad from the ES to the Baltimore/Washington area I was going to take him to Johns Hopkins, but he deteriorated so quickly that taking him in the car for a DX appointment was not tenable. Having him transported via ambulance was extremely expensive, and after reading posts on here it seemed like there was no need to have an official DX since nothing really could be done anyway. But, if your dad is still relatively healthy physically, you might try Hopkins, U of MD, Arundel Med. Center??? There must be someone in that area who specializes in LBD.

Why is your mother staying in an unsafe situation? She needs to get away from him, or he needs to be placed immediately so she can be safe in her own home. She should not be subjecting herself to a dangerous, violent person even if she is married to him. Has anyone contacted the police about him? I'd have them on high alert and encourage your mom to have an escape route at all times. She should also be sleeping in a locked room so he cannot get in. Please encourage her to keep herself safe at all times.

If you do find a good dr. there, you might post on here so someone else needing the referral will see it. Good luck, and let us know what happens. 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.


Tue Dec 23, 2014 5:36 pm
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Joined: Thu May 15, 2014 10:41 pm
Posts: 157
Location: Phoenix, AZ
Post Re: Extremely aggressive behaviour
OldSalt - My experience with both my mom and my dad was that there was a doctor associated with the living facility who generally does the diagnosing. That said, I'm sure that doctor also refers to appropriate specialists (in this case, you need a good neurologist). If you can screen the facility for experience with LBD, that would be a huge plus! Good luck. And I agree with Lynn - please encourage your mom to take all precautions for her own safety.

_________________
Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.


Tue Dec 23, 2014 8:18 pm
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Joined: Wed Oct 01, 2014 1:49 pm
Posts: 119
Post Re: Extremely aggressive behaviour
Oldsalt, Good Luck with that.... If he is in side of his home,he doesn't have to come to the door, how are you going to get him out of the house? Your moms best bet is to leave him so she can stay safe,if it was a unhealthy home before,it will get worse. Dementia continues to get worse never better.


Sat Dec 27, 2014 2:01 am
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Joined: Fri Jul 04, 2014 2:58 pm
Posts: 3
Post Re: Extremely aggressive behaviour
Hi,

I just wanted to update everyone on what happened with our dad, in case it helps others to hear the story.

We arranged to have him start at a nursing home near the end of January. At this time his dementia had worsened to the point where he was hallucinating often, he usually didn't know who we were, he could not feed or toilet by himself, but he could mostly still walk and talk (there were incidents when this was not the case). He remembered his general family history some of the time, and his own name most of the time, but couldn't remember our names or our mother's name most of the time. There were some scary violent incidents at home that told us it was definitely time to get him in a facility.

Anyway, two of my sisters went with him to the nursing facility, and explained the situation. He became extremely agitated and cursed at them both, tried to follow them out of the facility, and as soon as they left commenced to turn over tables, attempted to punch the staff, threw a boom box at a staff member (luckily, he missed) and just generally carried on violently, bending silverware and yelling and punching.

The police were called and he was placed in a nearby hospital, where it took him a full three days to stop being violent and trying to hit the hospital staff, and he had a policeman in the room with him for most of this time. Unfortunately they did give him Haldol there, and we did not find out until afterward. That said, I'm not sure what we could have done to stop it given his extreme violence.

He was then transferred to Levindale, a hospice in Baltimore that seems excellent for this kind of thing (in case anyone needs it) where the intent was to get him on stable medications to manage his behavior and then transfer him to nursing care.

Unfortunately (or perhaps fortunately, since we all know how the LBD story eventually ends!) he soon went catatonic, then got an infection and spent a couple of weeks in and out of the ICU. He never really recovered the ability to speak, and luckily we were able to let him go without ventilators or feeding tubes - it took him a few days to die quietly.

I realize he may have gotten NMS from the Haldol, but I don't know that that was a bad thing in the end, considering how violent he was. I think this was all for the best - better this than that he kept being shuffled from facility to facility and acting out.

In any case, I hope he rests in peace and I hope this story helps someone. I think if we had somehow been able to get him on behavioral medications earlier, it would have been helpful, but he was so doctor averse (threatening and swinging at them) that that was really impossible.

I definitely agree with the poster who said that 'dementia makes behavior worse!'


Tue Mar 03, 2015 5:29 pm
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