LONDON (AP) — Anti-psychotic drugs commonly used to treat Alzheimer's disease may double a patient's chance of dying within a few years, suggests a new study that adds to concerns already known about such medications.
"For the vast majority of Alzheimer's patients, taking these drugs is probably not a worthwhile risk," said Clive Ballard, the paper's lead author, of the Wolfson Centre for Age-Related Diseases at King's College London.
"Would I want to take a drug that slightly reduced my aggression but doubled my risk of dying? I'm not sure I would," Ballard said.
The research was published Friday in the medical journal, Lancet Neurology.
Alzheimer's disease is the most common cause of dementia and causes symptoms including aggression, delusions and hallucinations. Previous studies have shown anti-psychotic drugs, which can help control the aggression and hallucinations for a few months raise the risk of death in older patients with dementia. There are other side effects, including respiratory problems and stroke.
Ballard and colleagues followed 165 patients aged 67 to 100 years with moderate to severe Alzheimer's disease from 2001 to 2004 in Britain. Half continued taking their anti-psychotic drugs, which included Risperdal, Thorazine and Stelazine. The other half got placebos.
Of the 83 receiving drugs, 39 were dead after a year. Of the 82 taking fake pills, 27 were dead after a year. Most deaths in both groups were due to pneumonia.
After two years, 46 percent of Alzheimer's patients taking the anti-psychotics were alive, versus 71 percent of those not on the drugs. After three years, only 30 percent of patients on the drugs were alive, versus 59 percent of those not taking drugs.
In the United Kingdom and the United States, guidelines advise doctors to use anti-psychotic drugs cautiously and temporarily. But in many nursing homes in Europe and North America, up to 60 percent of patients with dementia are routinely given the drugs for one to two years.
"The drug regimen for any person with Alzheimer's needs to be personalized," said William Thies of the Alzheimer's Association in the U.S. Thies was not connected to the study. "At some points, some people will be better off with no medication."
Simon Lovestone of the Institute of Psychiatry at King's College in London said psychiatrists should try environmental or behavioral therapies instead of anti-psychotics.
Experts aren't sure how the anti-psychotics increase patients' risk of dying. But they think the drugs could be damaging to the brain and their sedative effects make patients less able to exercise and more susceptible to deadly infections.
The study was paid for by the U.K. Alzheimer's Research Trust. Ballard reported receiving grants from various pharmaceutical companies which make drugs used to treat Alzheimer's patients.
My husband, if asked to make this decision for himself in advance, would definitely choose to take a drug that reduced his aggression and doubled his chance of dying. For my husband, at least, reducing aggression may someday make the difference between staying home and being placed in a facility. I asked him once if he would rather be drugged out of his gourd at home or in a facility where they could manage his behavior better and he said drugged out of his gourd at home. And he would certainly see dying before the end stage as a good thing.
The article is also misleading because it talks about Alzheimer's drugs but it means Seroquel and the like, not Aricept or Namenda.
pamsc-very early on my husband with FTD was very aggresive, AD meds made matters much worse. I spoke to his neurologist about putting him on Seroquel (I'm an RN). She asked if I knew the black box warning about the danger of the drug. We stood facing each other for a moment they she smiled and said "you have to have a life, too". Seroquel gave my husband an extra year at home. Would I do it again-YES
I'm back to asking would they deny a terminal cancer patient pain relieving drugs even if they might cause an earlier death?
Don't they understand that dementia is a terminal illness. I doubt if my husband has "a few years" left. If he was in need of those "black box" drugs and they improved his quality of life, I'd be using them.
Yeah, I saw that article too. I think the guy doesn't know what he's talking about! HE can go ahead and be aggressive if he wants, but who'll take care of him then??
That must have been really tough, Bluedaze, to have aggression at the beginning. FTD sounds very scary. My husband has Lewy Body Dementia, with which aggression is fairly common, but so far he is very passive. He doesn't have hallucinations yet.
I also add, how many conversations have we had about hoping 'something else' takes our loved ones before end stage AD??? DUH??almost all of us agree..so in response to that article, who cares? i agree -if my DH can stay home and not be placed in a facility and be put on one of the aggression drugs if needed-(which i might add we already did!) then yes he'd want to have the meds at home and prolong his ability to stay here with me EVEN if it shortened his life. and they give them to them just the same at the slighest altercations in the facilities anyway..most facilities dont have the employees available to deal oneonone with an altered patient. sometimes you have to wonder about the experts who are producing these trials and who exactly are they trying to save in the process long term- divvi
My wife M was prescribed a minimum dosage of Seroquel (25 mg) to suppress vivid nightime hallucinations in 2002 when she was diagnosed with AD. A few months later a minimum dosage of Paxil (10mg ) was prescribed to suppress near violent and scary mood swings. "Mood swing" doesn't really do justice to those yelling and screaming fits. I'm glad they are gone. Whew!
Well, in 2009 she is still taking those meds and has been at home in my care all those years. Without them, she would be in a NH and I would be bankrupt paying for it. The meds were definitely good for us. She is in stage 7 now and in a home care hospice program still with me.
My DH with FTD is on Risperdal for delusions and aggression at this very moment. I would hate to say what life would be like if he wasn't. These doctors take an oth, "First do no harm". Well, the harm is done! AD is here and alive and taking our LO's heart, mind and body. What could they be thinking? How are the caregivers to take care of them? Put them in restraints or lock them up for fear they will hurt someone? NOT HERE! Been there, done that.
I was wondering when y'all would find this one ... I wasn't about to get you all in an uproar by telling you about it. We've been having a very lively discussion about it over on the Alz Assn website.
When you see a news release, please try, very hard, to differentiate between the research itself, and the hash the idiot news media makes when reporting on it, OK? Although in this particular instance, the study is terribly flawed, and the researchers didn't improve matters any by what they said in the abstract for their paper.
From the various posts over on "the other site":
The problem I have with these studies is that there is no way to have a group of people, such as they describe, divided equally, with equal outside factors(other health problems, etc.). Their ages ranged from 67-100. They ranged from moderate to severe AD. We do not know if they were all on exactly the same other medications. So many variables.
Hmmm ... there are a few things missing from the article you found, such as the cause of death: "Of the 83 receiving drugs, 39 were dead after a year. Of the 82 taking fake pills, 27 were dead after a year. Most deaths in both groups were caused by pneumonia."
(a) All of the patients had been on one of five antipsychotics "for at least 3 months" prior to the start of the study. We do not, however, know how long they had actually been on antipsychotics. (At the start of the study, half were left on their regular meds, and the other half given dummy drugs.)
(b) Of the five antipsychotics, only one is commonly used in the U.S. (Risperdal). And they didn't have enough patients on three of the five drugs to be able to draw any conclusions about their risk.
(c) David Knopman, M.D., a professor of neurology at the Mayo Clinic in Rochester, Minn., who was not involved in the study, emphasized that the survival disadvantage did not begin to appear until about nine months after the start of the study, which he said supported the relative safety of short-term use of antipsychotics.
Another assessment of this study commented that in clinical practice, the average length of prescription for any of these drugs is 1-2 years. Given that the patients had already been on the drugs for an unknown period of time, the first year of the study may be the only valid data.
(d) Only the first year of the study was double-blind. Which means that they knew who was getting what during the last two years. And while I'm seeing percentages of patients living vs dead in years 2 and 3, I'm not seeing actual *numbers* of patients. So we have no way of knowing how many patients "dropped out" from each group during those two years.
(e) The researchers themselves cautioned that the data from the later time periods should take into account that fewer participants were analyzed at later time points. (I.e., while the percentages may appear huge, they are apparently not statistically significant because it wouldn't take very many patients to cause a huge shift in percentage.) Note also that we have no way of knowing which of the drugs any of these patients were actually on. With five drugs under study, and smaller and smaller groups of people on each, how can one draw valid conclusions about any of them?
(f) The patients were all in nursing homes in the U.K. The authors also concluded the reason the patients in their study were on the antipsychotics in the first place was because the homes were understaffed and the employees were not trained to use nonpharmacological therapies or alternate medicines -- "such as Namenda or antidepressants".
(g) The researchers also concluded, "Our opinion is that there is still an important but limited place for atypical antipsychotics in the treatment of severe neuropsychiatric manifestations, particularly aggression, of Alzheimer's disease."
Of greatest concern for me would be the "doping" of ADLO's when there aren't caregivers or family that are monitoring impact. I used to work in an advocacy field for children and adults with developmental disabilities (another truly vulnerable group of folks), and those that were institutionalized were MUCH more likely to be given psychotropic medications than those who were living in the community with their families. Now, there's always the "chicken-and-the-egg" problem with that: Were they given more antipsychotics because the were too ill to live effectively in the community so they happened to be institutionalized and really needed the meds? Or, were they institutionalized, and oh-by-the-way it was alot easier to deal with them there if they were given antipsychotic medications, many of which also have other side effects like sleepiness, trouble walking etc that could make patients more easily managed? I believe that their are reasons to use these medications on a case-by-case basis, and I believe there are also some valid reasons to carefully monitor their use, particularly in light of study data like this. As is pointed out in the article, it is also study data like this that leads to warning labels about side effects that we might not otherwise know about, but that we need to understand to be strong surrogate decisionmakers.
Even the researchers themselves voiced your concerns, that the meds were perhaps prescribed because the nursing home staff weren't able to deal with the patients. It didn't sound as if the participants had loving caregivers actively involved in making decisions. And one thing that makes me think that is ... if you felt that your loved one needed meds to help soothe severe behavioral problems, would you agree to a study where your loved one might be taken off the meds without your knowledge? And, knowing that antipsychotics can have adverse side effects and that AD patients can eventually stop needing them, would you agree to a study where your loved one was required to stay ON the meds for several years without any input from you on whether it was time to re-evaluate and adjust the medications?
Leaving aside the myriad problems with the study's design, I thought it was odd that Clive, the researcher, was so certain that our ADLOs would prefer a few more months of agitated/aggressive life to taking a drug that calms them...
...after all, plenty of us care for ADLOs who said long before they were ever ill "If I'm ever like that, take me out and shoot me."
No legitimate conclusion can be drawn on a study with a population this small.
New Realm ... I've been meaning to compliment you on the portrait you selected for your thumbnail icon. Quite charming. <grin> Although you don't look a thing like you do in your wedding picture.
I vote yes for antipsychotics, if the behaviors warrant them. It may be a tradeoff for better quality of life now vs. a longer life span, but who wants a long life span anyway when AD is involved? It's not just that giving them makes the caregiver's role less difficult, but it is so beneficial to the patient's well being to control aggression. Anyone who has seen someone they love fly into a rage knows that if there's a way to avoid that, bring it on! Once there are better treatments or a cure is discovered, I might change my mind. But for now, I think families/patients need to use every tool available to control aggressive behaviors, even if they pose some risk in the long run.
So, what is the issue? Have they taken care of someone who yells at you and is abusive? My LO hated violence and would be horrified that he was so violent and abusive before the anti-pscyotic drugs. He would want the drugs. He may not live as long, but what is his quality of life now.
ME TOO...I agree with all the opinions expressed above. Plus, as we say that many people in the medical field do not have a clue about ALZ...apparently researchers do not either. Maybe a good reality check would be to spend about 10 days with some of our spousses. It would take 10 days for them to get tired enough to see the light. Ann
Without seroquel, due to violence Lynn would have had to have been placed already. We just increased his dose, and it is making such a huge difference. He NEEDS it, it can NOT be good for him to be so wound up all the time. And frankly, warning me it could make his die sooner, is not a deterrent. If there is anything I could do to prevent him from suffering late stage 7, I would do it.
Seroquel is also my lifeline with Charlie. We have tried Namenda and Depokote, both of which seemed to not do much good, in fact I think the Namenda made him worse. I have taken the Deopkote away completely and am in the process of taking the Namenda. however, the Seroquel made a difference from the beginning and we too just increased his night time dose. If it shortens him life, so be it, it certainly isn't much of a life to begin with. And it just might add a few years to mine.
One of the things that Sunshyne said really hit me hard. After several years on the drugs, these originally moderate to severe dementia patients started dying.
After several years with or without the drugs, they would have started dying. All dementias are terminal. Severely demented patients don't have "several years" to go no matter what drugs they are on.
I think that we would all agree (including our spouse prior to the on-set) that this isn't about quanity but QUALITY of life. So, if the medicines bring a few add joys rather than days or months I vote medication regardless of risks.