I really question the value of the conclusion that they should be avoided. These "experts" should spend a day with a severly agitated AD patient on a tear.
The real problem with these "experts" is that they seem to have forgotten two things.
All dementia is terminal. Would they really object to someone with terminal cancer using a drug that was "black boxed" if it improved quality of life while the patient was still alive? (Well as a matter of fact before hospice got as powerful as it currently is, the answer to that used to be yes.)
I'm not using any of these drugs right now, but I am well aware that if the violence had continued, it was either one of these "black boxed" drugs or a locked ward. All I would need was knowing Nikki to know which one I'd choose. And in any case the first thing they would have done in that locked ward was try a bunch of black boxed drugs to see if any of them would work.
I agree with you bluedaze and Starling, quality of life to me seems most important and an end to the violence in the AD patient. I don't think that my DH would still live with me in the house if it wasn't for a black box drug.
Because of his mental illness my husband is on at least one of the 'black box' drugs and there are warningd like 'not for use in patients with ..." However, he was in a locked ward when they put him on the "BB" drug, to replace the psych med that caused him to develop a false signal telling his body to dump the 'extra' electrolytes. The psych med being replaced was to control, what I call "epilepsy of the temper center". As with epilepsy, onbe nberve would over produce communicating chemicals in response to an irritation and that would trigger an extreme response---fist in the wall over a trashed paper plate. With the replacement med. he can be angry(a fair feeling), but not violently so. I've had to view the complicated combination of problems he has and the choices for treatment available and come to the realization that there are not always best (or even good)choices in treatment. We are trying to maintain him in the best state possible to have as good a life as possible as long as possible. This is where quality outweighs duration. Without the "BB" med, it wouldn't be safe for me to keep him home; it wouldn't be safe for him; and in a locked unit they'd still be medicating him heavily and/or restraining him big time. What kind of life would that be? I view VaD as a "cancer of the mind", and he deserves every effort I can provide to help him through its progression.
my objection to anti-psychotic drugs has been the possibility that my husband would get diabetes which was a possibilit y wit h Respirdal and could have happened because of his family's history of diabetes. I didn't want him to have this in addition to Alzheimer;s and live with us to manage the disease also. In the same vein, I wouldn't want him to suffer a stroke or series of strokes and live with t he result in addition to Alzheimers. This are difficult enough to manage without dementia, I didn't want to be responsible for gambling with his health when he couldln't take care of himself or make the decision to take the risk. IN his instance, the drugs only made him worse so the staff worked with me to use environmental interventions to change or modify his adverse behavior. It worked very well in his case. This was done by professionals with resources to do so in a nursing home. I can understand that it would be very difficult at home by a caregiver. If the anti psychotic drugs had effected a positive change, it might have been easier to allow them to be used. However I would hope other less powerful drugs might be tried first.
I have posted in other threads my opinion of this "black box" warning..... I copy and pasted from one of them :)
"One thing to keep in mind concerning the black box warning “Elderly patients with dementia-related psychosis treated with atypical antipsychotic drugs are at an increased risk of death compared to placebo.” ........... compared to a placebo, in most cases a sugar pill. Therefore, ANYTHING would be of an increased risk.
Another thing one has to consider is quality of life. Lets not forget AD IS a terminal disease...If our LO's are erratic, aggressive etc etc, we are not happy, they are not happy..... the stress comes to the point where you have to medicate, or put them in a NH. My neuro said if Lynn was placed in a NH he WOULD be given these same drugs, and at much higher doses. I decided our quality of life, far outweighed the risks. I want to keep him home, so in desperation I tried them. My ONLY regret is I didn't put him on them 3 years ago! He is doing fantastic on it. Everyone has commented on it.
Every medication has risks. One has to decide if quality of life, outweighs the risk of ANY medication. To me it is, without question. Seroquel has changed our lives! Lynn is now happy, NOT doped up happy, he is only on 25 mgs at night.... he doesn't pace any more, the behaviors that made it seem like he was uncomfortable in his own skin have ALL stopped... I am told daily how greatly I am loved.... I am able to be a better caregiver now. I am grateful for drugs like seroquel, I am able to keep Lynn home now, a gift I am thankful for every day.
..but I can see where carewife is coming from also. We protect them from falling as much as possible - altruistically but also we don't want to have to deal with the consequences of a broken hip or whatever. So we also should avoid putting them at higher risk of diabetes if that's in the family and IF the anti-psychotic doesn't help.
I think we all agree these drugs are only tried when all else has failed. I keep thinking back to when his aggression started, it was bad! I went to the VA in tears asking for help. The anti anxiety pills had made him worse, the behavior modification was a joke to Lynn. He told them to all go to hell and walked out! That doctor should have helped me, helped us.
Instead.... he told me about the black box warning, and made me feel like a leper for asking for help, and sent me on my way. To THREE years of living hell... that one little 25mg pill could have prevented. Am I bitter, yes I am !! I have lost so much to AD, now, I lost those three years due fear tactics and a biased doctor.
I think one has to consider what degree of aggression, anger, agitation ect you loved one is experiencing. If it is "only" sundowning, pacing etc. Perhaps one wouldn't want to risk the medicine. Of course if they didn’t work, they would be stopped. One also has to take into account how their LO would feel about their behaviors if they were in their right mind. Before AD, would they have risked medication to curb hurting you, at all costs?
In our case, I knew this answer would be yes. In our case, Lynn was to the point of being put in a lock down psyche ward. He WOULD have been medicated in these places, there is simply no choice with some AD patients. I know for Lynn, he would prefer death, to a lock down psyche ward. I know it with all that I am.
Lynn is going to die, there is no way around it. Do I want his last few years to be torment for both he and I? Or do I want to give us some quality of life so we can enjoy the time we have left. If he does have a stroke, I will not feel guilty. At his age, that is always a risk anyways. Our lives have changed for the better. The anger and aggression is gone, to be replace with hand holding and I love yous....
Nikki, you have done nothing to feel guilty about. We were taught from a young age to trust doctors' decisions. We now know that no one really knows very much about the treatment for the different symptoms of Alzheimer's Disease and what to do and how to help. What works for one AD patient, doesn't work for another. It is trial and error. That is a wonderful part of Joan's Place - we can help each other so much by sharing as you have.
You have been so much happier since Lynn has been on the medication! It is right for you. My husband has mini strokes, can't say but the five words, and though he kisses me and hugs me, he doesn't know that I am his wife, and I don't think he has any idea of what love is any more. I wish there was a pill to help him! Enjoy the quality of life with Lynn!
One of the things that drives me crazy about some of the black box warnings is the whole "stroke" thing. Half of our LOs have stroke related dementia. If they had a stroke while on the drug their dementia would get worse. That is a given. But their dementia is getting worse every day as it is.
Everyone needs to make these decisions for themselves. And we need to know that there is more than one way out of the violence situation. In my husband's case it was one very scary policeman putting the fear of God into him at exactly the right time. Unofficial avoidance therapy, but it worked. It has been months now with no second episode.
But the next episode would have landed him in the hospital where they would have tried the drugs. The first one was scary enough that I wan't going to experience any more of them.
Mary, I wish I had such a pill to give you!! We never know what tomorrow may bring, but with AD we have an idea of what the future holds. I think for me at least, keeping in mind, that today, is the best it is ever going to be.... tomorrow's will be worse... Has helped me try to live in today and appreciate what I do have.
The whole disease sucks! Each and every stage, but every single time I read about one of your loved ones not knowing you, being bed ridden, not able to talk... well hell... I get all teary eyed. I just can't imagine too much worse than that!
I agree that everyone knows their own situation and spouse the best and should make their decisions based upon their understanding and knowledge of and behavior of the Alzheimer person. My husband was placed in psych wards 3 times for meds adjustment due to his "aggression in response to ADL activities". He went into them feeding himself, continent, able to walk and came out incontinent, not able to feed self, falling and unstable gait, drugged into insensability.
When I took my husband out of the private NH and placed him in the VA home, I was paying $1000 every month alone for drugs. He was on Zprexa, Risperdal, Depakote, Seroquel . In addition, he was on Ativan, Tranzadone, Buspar, Lexapro, Exelon. My objections to these drugs stem from the fact that the psychiatrist immediately put my DH on strong dosages of these drugs without attempting any other interventions. My husband was very healthy originally with only the ALzheimers.
Please, please do not feel guilty or defensive over my comments. I know you who have your dear one living at home have to be protected from the rage, uncontrollable combativeness, senseless behavior of your spouse and sometimes all you or your psysician can do is to give a drug that has adverse effects sometimes. I am only advocating an approach that incorporates managing the environment so as to modify those circumstances that can influence the behaviors whenever possible. To prescribe other medications besides the antipsychotic ones first before immediately going to these drugs for behavior modification. For example, if the person doesn't want to be bathed when approached, then the person caring for him will talk to him preparing him for the bathing, telling what they will do, sometimes going away and coming back later, being patient with him. Behaviors usually happen because of a trigger which ignites the behavior. If we can figure what this trigger is then perhaps we can change the situation and get a better response. In many of your lives however, I realize that your spouses are young, and verbal, also strong. In fact, these black box warnings were derived from research on elderly people and many of your spouses cannot be classified as elderly. The medications prescribed and strength of dosage perhaps should be considered for the age factor as well as other considerations
In my husbands case, while on the drugs he had no quality of life. His future would be a recliner in front of the TV where he slept constantly due to the drugs, He now is on Tranzadone (very low dose) to sleep at night, Memantine for cgnitive skills, a drug for anti depression. He has been on these for four years.
My primary suggestions and concerns are addressed to the Nursing Homes. I feel that researchers and others in this field of neurological diseases especially Dementia should attempt to improve the quality of life for these dementia sufferers by recreational therapy, (art,music, field trips, physical outlets,etc.) placing emphasis on those activities that promote better cognitive functioning,rather than only addressing the pharmasuitical approach to the behaviors.
There must be a better solution then the drugging of our elderly . You as well as your loved ones are the victims of this approach to the management of the disease. I know emphasis must be placed upon research for cures or modification of the severity of the behavior but I also know that Alzheimers is a physical disease of the neurological system and the sufferer is a prisoner of his illness . I want my husband to have the optical quality of life he can experience as he slowly dies.
My goodness, I can see why you have the feelings you do. I couldn't believe the list of drugs your husband was on! I looked some of them up, and they shouldn't even be mixed. SCARY! It is no wonder he was comatose! I agree with just about everything you said except for one thing. I am not sure about most AD patients, but I know for Lynn, he needed no trigger to act out violently. " I " was his trigger. I never tried to force him to do something he didn't want to. Alzheimer's had a strong hold on the part of his brain that controlled these outbursts, nothing I did or didn't do helped.
It was because I didn't want him in a lock down unit that I wanted to try these drugs at home. Unlike you, I had a hard time getting them. I was made to feel horrible for wanting to give them to him, but for some reason the anti anxiety were ok, but they made him worse. It took my having 9 TIA strokes ... a near breakdown ..and a call to MY (not his) neurologist in tears for us to be given a prescription. Tragic! My neurologist has since filled a formal complaint against the VA doctors for their lack of care and compassion. I have done the same. It never should have come to that point. Lynn is only on 25mg of seroquel, no other meds at all. He is alert and as active as he can be. It is a shame that the medicines have been abused as in your husbands case. There is a true need for them, but moderation is key. Thanks for sharing your story carewife
carewife I consider myself fortunate. My husband is on Hospice in a dementia facility. I am an RN and research all my husband's meds. We have reduced drugs and dosages dramatically. The staff does not confront the residents and provide more mental stimulation than I could ever do at home.
I may have given the impression that the psychiatrist had my husband on Z yprexa, Rispeadal, Seraquel at the same time...she did not but interchanged them at different times.s Also the VA home staff were the first ones who helped wean him from the drugs and used other interventions. This VA home is wonderful most of the time with him and I think they are better than any private NH I had him in.
carewife and Nikki, you have both been through Hell. Opposite ends of Hell, but still.
There is no question that both of you have been abused by doctors who should have been helping you. Yet another reason to be as educated as you can be in this disease and to know how to ask questions.
What is a black box drug? I definitely need to have my husband on something for aggressive behavior. Any suggestions? What has worked for your DHs and DWs and what has not worked? I appreciate the help.
A black box is a warning put on some drugs advising of possible adverse and sometimes serious side effects. You have to weigh the advantages vs the bad effects. Hope this helps.
pollyp53---Being presented with the option of using a BlackBox Drug can be scary, but I found it wasn't that hard to make the decision when presented with that situation. DH was on a med to control "anger storms" almost like an epilepsy of the anger center. Extended exposure had triggered a false signal in his system, telling his body to dump the excess electrolytes (potassium, sodium,...) There was no excess so dumping them created BIG problems. We had to get the electrolytes under control (shortage can cause anger issues), and change the med. causing the trigger. The choice which was compatible with his other meds was a Black Box Drug. Yes, it can have serious (very serious) side effects. But without it he would have to be institutionalized and heavily medicated or restrained when the anger was triggered--and it was nearly impossible to know everything that might trigger an epissode. He's had no discernable problem with the newer med, and he's been home ever since he started on it, in Sept. 2006.
If you really think about it, you are weighing quality of life over the "possibility" of an event that would make him worse or take him sooner. That kind of possibility is hanging over us all the time.