Many, if not most, dementia patients experience problem behaviors and need medication to calm them down and remedy the situation. Usually, the docs turn to anti psychotic drugs that were developed for schizophrenic patients and used off-label for this purpose. The problem is, when used in a patient with dementia, they can produce unwanted side effects--thus, they have a "black box warning" by the FDA that they aren't to be used for patients with dementia. This can be confusing to families who need relief from the problem behaviors but are concerned about the warning.
My husband Steve needed these drugs in the early stages and was given Seroquel about 7 or so years ago and had been prescribed various other anti psychotics over the course of his illness. His doctor was careful to explain to me the downside of the drugs and the black box warning. But when I questioned him about the drugs' ability to shorten Steve's life, he said it would probably cost him a month or two. So there was no question--the drugs gave him a quality of life that neither he nor I would have had without them.
The reason I am posting this is that I now know what effect the drugs had on him. About a month ago, he started having Grand Mal seizures, and a nurse told me it might be the effect of long-term use of the anti psychotic drugs. She said it sets up a syndrome in the brain that causes seizures. The seizures are what sent him to a hospice facility and brought on his death. There is no question in my mind that it was worth it; he had a long, slow progression and never became bedridden nor went into the final substages of Stage 7. For that I am thankful.
So if anyone is worried by the black box warning, I would say that the benefits of the anti psychotic drugs far outweigh the potential risks.
Marilyn, thank you for your post...I am sure it is difficult to share your experiences now so soon after Steve's passing but since we all have such admiration and respect for you, Steve and the journey you so graciously shared with us, it is important information for all of us to have. Each spouse will make the decision about all meds, particularly the anti-psychotics, that they feel most comfortable with and I respect each persons decision. As I have chronicled many times on this website, I made the decision (actually the psychiatrists in the psychiatric hospital did) soon after Rich's diagnosis of "pre-senile" dementia and then probable FTD that the anti=psychotics would allow both of us to live a better quality of life. I most likely would have divorced him because he was so physically abusive if not for the anti=psychotics. If I had left, only god knows what would have happened to him since no one in his family even cares about him and have not been in contact since 2008.
I chose these meds understanding the risks and yes, something "premature" or dramatic may happen, but in my heart and my mind I know this is a fatal illness, so there's no escaping the inevitable. They have allowed me to be able to keep him at home with ft help and have allowed us both to continue to share a life, even though he is slipping away.
I would not change a thing and would take the same course with meds if I had to do it over again. In our case, the benefits have far outweighed the risks as well.
Marilyn, I too thank you for sharing that with us. It is valuable information to the newer people here. I, like you & LFL had to let my DH take an anti-psychotic (Seroquel). He started getting agggressive & agitated & since he refused to go back to his neurologist I didn't know what to do. So I came here & asked for suggestions, Seroquel was the one that came up most often. I know it has a negative effect on some, but thankfully after our PCP prescribed it, it helped. He is now in the Veterans Home (& I just knew that he would end up there eventually), but like both of you, I would take the same course of action if I had to do it all over again. The benefits far outweighed the risks.
My husband had FTD and was becoming violent. His neuro and I discussed the pros and cons of Seroquel. I am an RN and am well aware of the infamous black box warning. The drug let me keep my husband at home for an additional two years. It was worth the risk.
My DH was becoming more and more difficult to live with. He had wide mood swings over nothing I could pinpoint. The slightest thing could set off his temper. He had thrown objects or punched his hand.in anger. I started to be afraid of his uncontrollable anger.
The Dr. Prescribed Seroquel 25 mg. hesitantly. Thus s an extremely small dose. Once there were no side effects, she prescribed 25 mg am and pm. This has made a difference in his level of anger and frustration. It has not Disappeared completely but I am no longer controlled by a fear of it. He is more comfortable too.
I will give him whatever medication as needed to maintain a quality of life he and we can live with.
When my DH began the sundowners stress and anxiety in the afternoons and it became almost impossible to calm him, his neurologist prescribed Seroquil 25 mg. It has made a huge difference in his behavior. When he began having trouble sleeping at night and was so restless - she prescribed additional Seroquil. It quiets him and allows him to sleep - which allows me to sleep.
I actually carry one or two in my purse in case we are out somewhere and his behavior were to become a problem - i.e. the day I bought a new car and he went with me to pick it up - he got so angry at me I gave him one with a soda to calm him down.
Thus far there have been no side effects. I totally agree with the comments - these dear ones are dealing with a terminal illness - if medication makes their lives and ours as caregivers more "liveable" - then I am all for it. If you were dealing with a cancer patient or a stroke victim - you wouldn't think twice about using necessary medication. This, in my mind, is no different.