older woman with dementia, antipsychotic drugs, excess medicines, folate

The Food and Drug Administration has long warned that administering antipsychotic drugs to people with dementia is dangerous. That practice can increase the risk of premature death. Previous studies suggest that this danger is even greater than generally appreciated (Maust et al, JAMA Psychiatry, May 2015).

Nursing Home Residents Are Being Given Antipsychotic Drugs:

Despite the black box warning in the prescribing information, too many nursing home residents with dementia are being treated with these drugs on a regular basis. That’s the conclusion from a report put out by the Human Rights Watch (Human Rights Watch, Feb. 5, 2018).

The organization estimates that more than 179,000 elderly residents of nursing homes are being overmedicated in order to reduce disruptive behavior. Medications such as aripiprazole (Abilify), olanzapine (Zyprexa), risperidone (Risperdal) and quetiapine (Seroquel) are classified as atypical antipsychotics. They are approved for treating schizophrenia. It is unlikely that such medicines can improve dementia, though it may make some older people more docile.

Use of Antipsychotic Drugs Is Down Slightly:

The Centers for Medicare & Medicaid Services report that use of antipsychotic drugs has declined about 10 percent in nursing homes over the last six years. The rates went from approximately 25 percent to around 15 percent of nursing home residents on such medications. That’s an improvement, but there is still a long way to go to reduce the misuse of these drugs.

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  1. jan

    My mom is on risperdone and is not there with this med. I am not the care giver but spend 5 hrs daily and see how bad it makes her a zombie and is awful to watch. My moms medical does not believe me. Mom is in her home and the care is her sleeping night and day. A awful life.

    Maybe using Risperdone after everything else has been tried and when the symptoms improve try and see if it isn’t needed by removing the risperdone. I have found that usually a need is not met and they are not always able to tell anyone what it is so they act out. This didn’t happen with my mom and is very sad. Maybe as a last resort risperdone is needed but not at first.

  2. Roxy
    Butte, MT

    My name is Roxy and my Dad died in 2012. After an unnecessary wrist surgery at the hospital (at which I cried and attempted to stop. Gout can’t be ‘scraped’ from the wrist.) Dad was transferred to a rest home. At the rest home, Dad was given multiple medications including Zyprexa 3-4 times a day (and PRN ~ I have picture of the bottle). I went to early morning meds so that I could refuse the medication for him. At any rate, My Dad was given Zyprexa and send to a rest home because of infection. I wrote letters regarding the black box warning and the fact that my Dad never took any kind of medication like that in his life. I talked to pharmacists and the VA, who told me that they didn’t even stock Zyprexa. In the rest home, my dad became suicidal and lost his precious mind with his unique sense of humor. He wanted to jump out the nursing home windows and cut his neck. I was called to the rest home more than once. I reported that the rest home refused to stop the Zyprexa because the ‘doctor’ didn’t agree. I wrote to Adult protective services…….
    My dad survived the rest home for a short time, and came back a different person. The new VA doctor thankfully stopped the psychotropic meds..however, it was too late. Took Dad to another local hospital where they life flighted him to a bigger hospital and he died from sepsis ~ 2 weeks after his birthday. We had to take him off life support. Hopefully, this will never happen to another family. Thanking God that Dad is in heaven now.

  3. Margaret B

    My mother is in stage 6 Alzheimer’s and she takes Seroquil. A geriatric psychiatrist watches her carefully. Yes it makes her sleepy, but without it she thought people were trying to kill her, she was screaming at her caregivers, biting and hitting them. The medication allows her to be taken care of lovingly and allows others to be around her without frequent outbursts of anger. Before the medication her quality of life was horrible. Now it is so much better.

  4. Mary

    Anti-psychotics, if chosen and administered carefully, and if the patient is monitored, can be a real life-saver. My father had multiple strokes that disabled him and also had dementia and some depression. The medical team at his nursing home collaborated with family to find the right medications to improve his quality of life by easing his extreme agitation. Seroquel, at the lowest possible dose, gave him a semblance of normalcy, and got him through early evening, which was typically the worst time for him. It’s important to find the right medication, and to read the literature for side effects, and whether they increase the risk of 1) falls, and 2) death. Haldol, for instance, is at the top of the list for these risks when used with elderly patients.

  5. Sharon

    My very competent independent elderly mother had an acute episode of confusion a few years ago. Instead of getting a thorough workup, she got a (ludicrous) diagnosis of Alzheimer’s (which they told me must have been in hiding until the previous day). When her undiagnosed actual condition continued to get worse, her confusion turned into agitation, so they gave her benzos. When the same undiagnosed condition continued to get worse, confusion and agitation turned into psychosis, so they gave her all the previous meds plus antipsychotics.

    Two months later, she was a vacant, enfeebled shell of herself and had to be moved to assisted living. I spent two years finding better doctors and working with them to eliminate inappropriate meds one by one (including several psych meds, including antipsychotics). Today, she is her old competent, well-balanced, intelligent self – but the inappropriate meds took away her independence, and two years of her life.

    • Lash M

      My mother went through almost the exact same situation. My father (almost deaf) convinced her doctor that she had Alzheimer’s, and he loaded her up on haldol. When I finally got her out of there, and detoxed, she was not suffering Alzheimer’s, but she was permanently damaged. Doctors need more than one person’s complaints about a spouse before prescribing these meds! Once my dad had her comatose, he could get on with his life. He wouldn’t let any of us kids take her. It was terrible. They both are gone now.

  6. Cindy B.
    Seattle, WA

    Both those comments (Diana and Dagny) are right-on. Elderly dementia patients almost always suffer the kinds of symptoms that Diana’s father did. I know, because for many years I worked in inpatient psych facilities, and the few dementia patients on the unit ranted and raved, “heard” their long-dead spouses calling them, angrily resisted everything, got in other people’s beds, pulled the fire alarms, poured milk all over the carpet, couldn’t sit still… and all this doubled at night (“sundowning.”) They absolutely needed the anti-psychotics, but perhaps many others did not. We only saw the ones who’d created big problems at their residential facilities. Perhaps many others were overmedicated as a matter of routine and really didn’t need to be zonked out the last few years of their lives! And yes, it’s absolutely a matter of staff convenience, as there are simply insufficient staff to give these patients the care and attention they need and crave. When given personal time, even the most unruly patients usually calm down. Unfortunately they rarely get much of it, so it’s no wonder their depression and anxiety shoots skyward. And since anxiety feeds psychosis, there ya have it. (Also, of course, the above comments don’t just apply to dementia patients, but to most psych patients in general!)

  7. Donna

    I think that there is no benefit in denying these medications to dementia patients who are combative, extremely agitated and frightened. Of course it benefits staff, whose jobs are very difficult under the best circumstances (I have worked as a nursing home aid on the dementia unit). Families need to be vigilant to be sure the medications are really necessary and being given at appropriate doses. Of course, it would be better if nursing homes and other elder care facilities had enough staff, and those caregivers were adequately paid. But that would take an enormous public–government– commitment to caring for our elders which I cannot see happening in the current political climate.

    • Susan

      “Of course it benefits staff….”. Those drugs certainly didn’t benefit my mother-in-law. We walked in to the nursing home one evening and found her at the dinner table, head down in a plate of food. There were staff members only a few feet away. No one was paying any attention to her until we walked in – then they started hovering over her – because we were there.

      She was in that high-priced snake pit four months before she died. The effects of those drugs to ‘calm her down’ were sickening.

  8. Kenneth
    Central Illinois

    The evidence is strong that use of antipsychotic drugs doubles the risk of fatal stroke or cardiac event in elderly patients. These same very demented people are often confused and in their confusion strike care workers or other patients or family.

    Care workers are already underpaid and understaffed. How long will they stay on the job if they are repeatedly assaulted by the people they are trying to take care of? When my father in law was in a memory care unit, I wanted the medical staff to feel safe hugging him, helping him bathe, chatting with him when he was eating. None of this is likely to happen if he had gotten paranoid and he had been shouting/ punching/ cursing the staff.

    Properly used, antipsychotics can be selected and dosed so that they don’t cause extra sedation. (unmedicated older people sleep a lot quite naturally so it a bit hard to walk into a nursing home and figure out who is sleeping because they are over medicated and who is sleeping because they are aged). There is no other category of medication that gets such good control of this kind of aggressive or hostile behavior. In the “risk/benefit” conversation concerning people who are already within three or four years of death by dementia, I strongly assert that best quality life is the most important value. Studies that just look at instance of prescription of these meds seem to me to miss the point. Studies need to look at quality of life for this population as well as training nursing home physicians how to use these meds to minimize sedation.

  9. Barbara

    Nursing homes which receive medicare money are highly regulated as to drug use. It isn’t true that nursing homes practice wholesale use of antipsychotic medications. Federal regulations require assessments, regular evaluations, proper diagnoses and attempt at behavioral interventions when a resident is considered for treatment with psychotropic meds. They also require tapering and/ or drug holidays. I have worked as a long term care director of nursing as well as a state and federal surveyor of long term care facilities. If a nursing home is using psychotropic medications inappropriately, a complaint should be registered with the state licensing & certification agency. A survey team will go to the facility, unannounced, to investigate. The truth is that it is easier to use psychotropics in a hospital setting than in a nursing home. Such drugs are never to be used for staff convenience, and in my experience, almost never are.

    • Jan

      I also worked as a nurse manager (DON) of a skilled nursing facility, as well as a state surveyor of long-term care facilities. While it’s true that there are regulations that address the appropriate use of these medications, compliance often is dependent upon the buy-in of the surveyors themselves. It was not unusual for me to encounter other surveyors who too often concurred with nursing facilities’ practices because of their own (surveyors’) experiences in long-term care practices. As nurses, some of them felt uncomfortable questioning physicians’ prescribing practices. If residents are assessed appropriately, many times initiation of antipsychotics can be avoided.

  10. Nancy
    New Jersey

    My mother was prescribed Risperdal in a dementia/Alzheimer’s unit when we could not take care of her at home. It changed her metabolism and caused weight gain for the first time in her life; she was 83 yrs old. When she kept getting UTIs and for some reason the nursing home was not catching it, I looked it up and a couple other things she was being prescribed. I read that it causes urine retention!! The nursing home mistook the UTI as heart attacks or strokes and would rush her to the hospital. One UTI was not cured and a doctor’s appointment was missed and infection went to her kidneys. Then she really did have a stroke.

    She had no high blood pressure issues, no cholesterol problems and had been physically active. She was also ‘seeing and psychiatrist for the dementia which made no sense whatsoever. I finally got him on the phone he cancelled the meds and reduced his visits. Nurses or aides on the unit asked why the meds were cancelled, another doc said he did not know why and she ended up getting the same meds again without my knowledge until I got the bill. Nursing homes are secretive about the meds and not honest with the relative in charge about what was really going on. They also do not evaluate properly. They thoughts she was masturbating when she actually had an untreated yeast infection that was itchy. The docs rely on the evaluation of nurses aides and never really see the patients. I had no home just an apt on the 3rd floor so I could not keep her there while I was in work.

  11. Lisa
    burlington vt

    I have been on both sides of the issue as well. As a nurse I could see benefits and problems with these meds. I am thinking some antianxiety medication is needed at times. It is not a benefit to anyone including the patient to have wandering, crying and agitation to the point where a patient tries to leave and cries out all the time. Yes it is hard on staff and I have also seen drooling and someone gorked from too much medication.

    Aren’t there any safer medications than antipsychotics? I know Benzo’s can be too sedating and also disinhibiting but there must be some medication combo that can help. What quality of life is it to be too agitated and upset ? If someone has severe dementia their quality of life is already impacted. We had to monitor all patients on these meds very closely and I would rather see them used than having none at all. It is a very tough call.

  12. Babycatcher

    I think it might also be a way to have more turnover in the patient population. Just like a restaurant, the more customers who come thru in a given month, the more money to be made. Yes, it probably is easier for the understaffed facility to deal with drugged patients as opposed to undrugged. However, if you can’t care for them at home, you have to do your own research and determine what options you have for a loved one. Some people just don’t have any, and I think it will get worse in the coming years.

  13. Mary
    United States

    The real problem is that the nursing homes are being reimbursed for these harmful and inappropriate drugs. If insurers would scrutinize these charges as they do all others and stop paying for unsuitable prescriptions, the problem would be immediately solved.

    Over thirty years ago, one of my relatives with Alzheimer’s was prescribed Haldol while in a nursing facility, and it rendered him completely incoherent. So this problem is not new. And given all we’ve learned about cognitive impairment since then, it is appalling that nursing facilities are still being reimbursed for this.

  14. Mac

    My very active, alert, intelligent, young, 74 year old mother was given Risperdal when she was admitted to Duke for cancer. I was told that it would help her with cognitive function, which she did not lack in any way. Every time she was given this medication, she was then unable to speak, communicate, and was dumbed down. I could be having a perfectly normal conversation with her and with the Risperdal, her language would become garbled and she would not be able to get herself out of the bed or walk or be normal in any way. I finally asked a nurse to get the psychiatrist on call into the room and asked the nurse to also offer her observations that the drug made my mother into a zombie.

    The psychiatrist removed the order for Risperdal, and then the next day, a floor doc ordered another anti-psychotic medication. I refused to allow these drugs to be given to my mother, but it was a constant struggle. How does this happen? I observed the same thing happen to my neighbor in a nursing home, but the family was not willing to question the doctor’s judgement. One must be one’s own doctor these days, or have alert and knowledgeable advocates be vigilant 24 hours a day to prevent all kinds of inappropriate treatment. IMO.

  15. David
    Reidsville NC

    Thinking about drugs and older people, I am reminded of reports of patient behavior management and a quest for docility via drug usage when I went to work at a workshop for retarded citizens years ago. Other methods related to these patients’ control / docility included observations of patients tied to their beds to control their activities.

    Happily, treatment for them, in NC, was becoming and continued to become more informed with concepts of personhood, individual freedom, equal rights and law. Today, Dementia patients’ treatment is essentially a needless iteration of this earlier experience / lesson with patients with diminished mental capacity.

  16. Diana
    Greensboro, NC

    Risperidone was prescribed for my father who had severe dementia. He was anxious, obsessive compulsive, wandered and was very aggressive at times. He stayed at home where my mother cared for him until he went to a nursing home a month before he died. My mother was concerned because the Risperidone made him sleep a lot, so she greatly reduced his daily dose. All of the severe behaviors reappeared. She was absolutely unable to control him and that translates to care for him. He was extremely agitated, wanted to go outside at night, talked incessantly, hallucinated, seeing people long gone, and apparitions everywhere. We urged her to put him back on it.

    What good did it do for HIM to be angry, confused and agitated? What good did it do for HER to worry that this feeble, demented person was going to go outside and become lost? (He would insist on going out to the woods to find “people out there.” He could barely walk, but he was utterly determined. It got to the point that she figured she’d call 911 if he wasn’t back in a short period of time.) They could not afford a nursing home or in-home care.

    Why would anyone take away a life-line for those in need? Why would you allow THEM to needlessly suffer in a waking world of torment? As far as our family was concerned, Risperidone was a life saver. I can’t imagine what it’s like to care for a slew of demented people without some type of control. It is cruel and unkind to not give them mental respite.

    • DougG
      Erie, pa

      I agree 100% with Diana, our situation with my father was almost identical.

      If the drugs shorten the life a bit, what is the problem ?
      The nursing home patient is at the end of life, and is not very happy at all.

    • Marjorie
      Boulder, CO

      I’ve been a psychiatric nurse for many years and agree with you completely, antipsychotic medications can greatly improve quality of life for elderly nursing home residents by gently controlling anxiety and agitation. Dosages can be adjusted by an experienced psychiatrist to produce the desired effect while minimizing side effects. To withhold these medications because of the risk of premature death is absurd as most of these residents are already too old to die prematurely! Agitation, anxiety and psychosis are huge quality of life issues in this population and deserve to be taken and treated seriously.

  17. Karen

    My husband has been on oxygen for 2 1/2 years due to exposure to asbestos on the job. It has destroyed his lungs and nothing more can be done . Has anyone had any success with home remedies that may help his breathing. He is 78 and too old to go on the lung transplant list . Other-wise he is in excellent condition, heart, blood pressure, etc. I am losing him.

  18. Dagny
    Philadelphia, PA

    I’ve been both a paid worker and a volunteer at nursing homes, and prior to that I’d been a psychotherapist, often in a hospital setting, for thirteen years. In all of those situations it seemed to me that patients were overmedicated largely for the benefit of overworked staff. Under staffing and under paying are two ways that hospitals and nursing homes cut costs to the detriment of patient care.

    The atypical antipsychotics are especially worrisome because alarming weight gain and the development of diabetes are common side effects. There are probably additional frightening side effects of which we are not yet aware. These medications have only been in use since the early 1990s and were intended for schizophrenics and those with bi-polar disorder, NOT patients with dementia or Alzheimer’s Disease.

  19. Paula
    South Carolina

    A PCP prescribed 25 mg. dose of Seroquel on an as needed basis to my loved one who has dementia. The 1st dose put her in a deep sleep so I stopped it. Weeks later I placed her in a memory care unit, where the nursing staff insisted she needed it b/c of agitation. I compromised @ the 12.5 dose. When she fell 3 xs in 1 day, I demanded NO MORE! Turns out she had an aggressive UTI which contributed to her agitation. For that & other reasons, I brought her home. My experience was that the MCU’s staff wanted her comatose so they would not be bothered. Sounds like abuse to me so I filed complaints w/our regulatory agency.

  20. Penny

    I placed my late spouse in a skilled nursing home with secured facility for dementia patients. He had Alzheimer’s disease, was non-violent yet he was a wanderer. Several times a day I would visit him. The first couple of days my husband appeared coherent and awake upon my visits. After the 3rd day I always found him to be sleeping and untouched food on the bed side table.

    About the 6th day my late spouse appeared gaunt and his color did not look good. I am glad I requested to see his medical chart as I found the nursing home had been giving him frequent doses of Risperdal to prevent his wandering. It resulted in taking my husband to a senior psychiatric hospital where he was detoxed of all his medications. The process took over 30 days. It was devastating to me as I am sure it was to my late spouse. I found another nursing home that did not use medication to keep him from wandering and they took great care of him until the end.

  21. ME
    Yorktown, NY

    I had my mom in my home, just for few short periods she was in nursing home. For her Dementia and Alzheimer she was prescribed by a doctor Risperdal and Seroquel plus many other medications. When I finally started reading side effects, I learned, that two of prescribed medications should not be used together. I called the doctor about this matter and he responded, that he knows it and for that reason he prescribed her another medicine (!) which should calm down side effects of those two. Without Risperdal and Seroquel my mom’s behaving was often quite offensive, so coming nurse asked me to start giving her both medications again, so I did. As a result, my mom was just sitting quietly unable to move. My mom was big and heavy and we had very hard time to handle her with her “dead weight”. After few days coming nurse asked me to take her of these two medications. Five years of my mom illness was for me big eyes opener how these patients are handled.

  22. Karen

    My mother has dementia and is in a 6 person personal care facility. She is on Seroquel. I asked that she not take these drugs and they tell me that she has to take them to stay in their care. I know that she could be more conversational with out these drugs. Having dealt with 3 other large nursing homes, I can say that yes indeed they drug the dementia patients to keep them from wandering or causing any trouble.

    Nursing homes are glorified baby sitters for the elderly and they drug the patients to make their care easier. In the large facilities there are so few workers for the many residents that they can’t really watch or care for them with out keeping them drugged and parked in a wheel chair. When you are putting your loved one in a facility they sell you on all of the activities they will happily participate in. In reality, Mother’s day is spent drugged in a wheel chair parked in front of the tv. My brother and I try to take her out as often as possible.

  23. Linda

    It’s considered chemical restraint and illegal in most states. It requires more staffing to monitor agitated patients, engage with them and keep them nearer the nurses station. I get the rationale, but it’s still wrong and needs serious documentation to be justified. It’s a medication order from a physician and should not be h prescribed so readily.

  24. Susan

    Any suggestions on safe sleeping aids for elderly alzheimers patient?
    Patient is up and out of bed 5-10 times at night, sometimes to urinate , sometimes not. She cant take melatonin due to low blood pressure.
    All suggestions appreciated.

  25. DanM
    Cary, NC

    Years ago my mother was living in a nursing facility which notified me they thought some antipsychotic drugs might improve her quality of life. I was visiting her every week and she had mild dementia. She suddenly started having psychotic breaks and kept talking about imaginary events that seemed to be strange waking dreams and sometimes nightmares.

    The staff assured me they thought the drugs were helping her but the change seemed so drastic to me that I asked them to stop those meds. My mother’s sense of reality quickly returned. It seemed to me that the nursing staff was indifferent to cognitive state and apparently it made their jobs easier when she was “spaced out”, but it meant a lot to me to have my mother living in the real world for the last year of her life.

  26. Parrish
    Los Angeles

    A rate of 25% of patients reduced to a rate of 15% of patients is a 40% improvement, not 10%.

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