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    Angela Lunde

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  • Alzheimer's blog

  • Aug. 31, 2012

    Antipsychotics overused in people with Alzheimer's

    By Angela Lunde

50 comments posted

Alzheimer's Caregiving

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Dear Readers,

I'd like to conclude this series of postings around the unmet needs of persons with dementia by sharing with you a blog written by Dr. Cheryl Phillips. Dr. Phillips is a geriatrician I met in Washington, D.C., a short while back at a gathering to discuss non-pharmacological interventions in caring for persons with dementia. She writes about an all too common way that behaviors in dementia have been addressed — drugs.

Federal officials are working to place compassion at the center of how our nation aims to treat elderly patients suffering from dementia.

The Centers for Medicare & Medicaid Services (CMS) has announced that they'll coordinate an effort to dramatically reduce the use of antipsychotic drugs among dementia patients in nursing homes.

The agency's plan acknowledges that these powerful pharmaceuticals are often overused — and represents a valuable first step toward improving the way we treat people with this condition.

But government alone shouldn't dictate how we deal with dementia. Families and caregivers must also recognize when medication is appropriate — and when it's not.

More than five million Americans are afflicted with Alzheimer's and related dementias. Coping with a loved one suffering from the disease is an immensely trying experience — one that can leave even the most stoic among us desperate to try anything to alleviate a family member's suffering.

It's no surprise, then, that nearly 40 percent of dementia patients living in nursing homes receive antipsychotic drugs. Overall, some 14 percent of nursing home patients are on antipsychotics. These are alarmingly high numbers, given how ineffective — or even dangerous — the drugs can be.

For starters, antipsychotics have not been approved by the federal Food and Drug Administration to treat dementia. No drugs have. Only about 20 to 30 percent of elderly dementia patients who take an antipsychotic drug show even marginal improvement.

For such unimpressive results, the potential harms are significant. For every 53 patients treated with such a pharmaceutical, one will die. And for every nine to 25 patients that benefit from an antipsychotic, one will die.

As a result, the FDA has issued a rare "Black Box Warning" stating that patients administered the drugs face a risk of death 1.6 to 1.7 times greater than those who take a placebo.

And yet, a blind faith in the effectiveness of antipsychotics that's not borne out by the science remains. Abandoning this belief is a necessary first step toward improving the way we treat dementia — and saving lives. To do so, we must first change the way we think about the illness.

Many view dementia as the cause of a number of behaviors that need to be corrected or controlled. This misconception fits our cultural penchant for pills quite nicely. For instance, Grandpa George's loud incoherence or Aunt Esther's refusal to calm down are symptoms that need to be alleviated through medicine — or so the thinking goes.

But folks displaying the disruptive behaviors associated with dementia are more often trying to communicate with those around them. Their "acting out" signifies their frustration at their inability to do so.

Consequently, people interacting with them — whether family members or professional caretakers — ought to try first to understand what the patient is trying to convey. Then, they can take appropriate action.

For instance, yelling, wandering, or resisting care are not symptoms of psychosis and will not be resolved through the use of antipsychotics or other medications.

But if a drug is judged necessary, keeping close tabs on it is imperative. A checklist can be helpful. Is the person showing signs of improvement? Are they better able to engage with others and with their surrounding? Can that individual get by on a lower dose? Is the medication even working at all?

All too often, families and caregivers fail to ask these questions. That's a mistake. Given the risks associated with antipsychotics, determining how to address dementia-fueled behaviors without drugs is vital.

Fortunately, there's a growing body of evidence that supports the effectiveness of behavioral modifications and non-pharmacological interventions to treat dementia.

This new approach isn't just something for nursing home staffers or professional caregivers to consider — it's important for us all. Odds are that we all know someone who suffers from the condition — or someday will. Decisions about their potential paths of treatment may fall to us.

CMS is right to try to reduce the use of dangerous antipsychotics in dementia patients. But it will not succeed without a shift in the way we all think about this debilitating condition.

(Dr. Cheryl Phillips is a geriatrician and senior vice president of LeadingAge. See www.leadingage.org.)

50 comments posted

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  • September 7, 2012 2:40 a.m.

    Jenna, you made some good points about the long term/nursing home staff's issues. As a caregiver who was hospitalized for an emergency medical problem, my wife was put in a nursing home by the hospice service. After 4 days of their lack of attentive care I was able to leave the hospital and take her back home. She was dehydrated, and starving for food because the aid's did not have time to feed her with their other patients - after all she was dying so they thought. She wouldn't voluntarily open her mouth or swallow over a tablespoon of water - AD symptomes I have dealt with for 11 months. The aid said that was how they were trained to tell if someone was shutting down to die, so they had other people to feed and my little lady was being left to die like a POW in a concentration camp. Now, this facility has very good reports however left me wondering how many loved ones are over medicated or starved to death when the cause of death is listed as the disease? Lessons learned - LTC facilities staff can not be expected to take much time feeding patients that are helpless to speak or feed themselves. Hospice PT's well they are dying so no big deal. CNA's and aids may have 8 to 15 patients to oversee, and it is impossible for them to feed a pt that takes an hour to eat/drink each meal. Hire or get volunteers to feed your loved one that is virtually helpless.

    - Gary

  • September 6, 2012 7:47 p.m.

    I'm 100% in agreement with Sandy. My husband passed away from Alzheimer's 4 mo. ago. He had been diagnosed 4 years previously, and I cared for him up until he ran off. By then, he was entering the final stages of Alzheimer's, and I could no longer control him, so I placed him in a memory care facility. He was, at that time, taken off Aricept and Namenda, and placed on Haldol, a antipsychotic. He in no way improved, being non-verbal, incontinent, aggressive. However, due to the Haldol, he was incapacitated enough to be able to stay in the facility without causing injury to someone else. He died 3 mo. later. We must remember that Alzheimer's is a terminal illness. There is no improvement, only decline. The late stages are a nightmare for both patient and caregiver. My husband would have hated living as he was, and it was a blessing to both of us that he passed away. If Haldol hastened that, then hooray for Haldol. We had 42 good years of marriage, and, thankfully, there were only a couple of bad years, not 10 or more, as can happen. If you haven't cared for a late stage Alzheimer's patient, then, please, learn more about it.

    - Pat

  • September 6, 2012 6:58 p.m.

    To Nick regarding Namenda. My 74 yr old wife has Alzheimers and is also roux-en-y gastric bypass. In our recent experience the titration starter was in the third week when she experienced uncontrollable diarrhea. It turns out that the drug does not completely metabolize in 24 hours and subsequent doses accumulate to an unsafe level in addition to an increase in dosage strength. The Doctor that prescribed the Namenda did not return my calls. The pharmacodynamics of Namenda was researched by a Pharmacy student and provided reprints of the search. My wife is off the drug and will not be subjected to this again. Every patient reacts to drugs in their own way. As others have learned it is wise to research every drug on your own. Doctors are still "practicing" medicine.

    - Don

  • September 6, 2012 6:33 p.m.

    My husband has been "sort of" diagnosed with the possibility of having the early stages of Alzheimer's Disease in 2009. A year previous to these medical tests, my husband displayed alarming states of forgetfulness, necessitating seeking professional advice, thus the tests and the results. We were counseled to try one of the current medications for Alz Dx, which would delay the progress for a few months, but not stop it. I opted not to try the medications,and have been trying to keep my husband busy most days.But because he forgets, I have to be with him 24/7. Acupuncture treatments help a lot in maintaining his general well-being. We walk at least four times a week.I try to cook most days, to ensure that what we are eating are nutritious. For 18 hours everyday, our conversation is mostly his repetitive questions and my repetiive answers for matters of the past that he only remembers, and the emotional outburts that he displays. Hopefully I can continue doing what I am doing now in managing my husband's health situation. But there are times, though, that caring for a loved with this problem is so exhausting to one's spirits, as there appears to be no light at the end of the tunnel.

    - paola

  • September 6, 2012 5:15 p.m.

    I must agree with all those who have commented who are working very hard in this field to address an overwhelming number of needs with never enough available staff. One cause of this shortage does seem to be the lack of caregivers who want to work with dementia patients or who have the talent and expertise to do even an adequate job. However, the other cause for this poor staffing ratio is corporate owners who are using the profits from your loved one's estate to build more facilities than they can adequately attend to. My mother is currently in a healthcare facility owned by Trilogy Health Services. They currently own over 70 facilities and are building 6 more as I write this, yet the dementia unit is always understaffed. Trilogy continuously advertises activity programs that do not happen. Their 'art program' for example is scheduled for 3 months of the year in spite of all the current research that states how important art is for reaching alzheimer's residents. Often when I visit my mother the lights in the activity room are not even turned on. In 14 months I have seen my mother participate in one activity that was actually in progress when I arrived: a word search puzzle printed so small that she developed a headache and started to cry because she thought she had to finish it. Not one staff member was available to help her: they were collecting residents and seating them for noon lunch at 10:30 in the morning!

    - Lynn

  • September 6, 2012 4:54 p.m.

    They may not be right for everyone, but antipsychotics really helped my mother-in-law (who has early-onset Alzheimers) feel safer. She was having hallucinations and scared all the time. She would hide under/behind things. She is much more relaxed now.

    - KJ

  • September 6, 2012 4:08 p.m.

    Thank you for this research. My Dad just died two weeks and this is still very fresh in our families mind. During the last few months of his dementia his daily care grew too much for home care and we reluctantly placed him in nursing home care. He was prescribed anti psychotics to help the staff. We couldn't get them to stop and moved him to another nursing unit in another state (with another sister). Same thing occurred then. We had no trust in the medical community prescribing medicine to help him when he was scared, anxious, etc. I was outraged at his treatment. I expect in 10 years this time will be looked at as the dark ages of dementia care and drug constraints will be looked at as barbarically as physical constraints are viewed now.

    - Laurie

  • September 6, 2012 3:35 p.m.

    Kimberly, I know where you are coming from, alzheimer's is ONE of the dementia's..my wife had Pick's, like lewy Bodies, it is a much more rare form of the dementia's, as soon as we discovered that she had Pick's instead of alzheimer's, the Dr. took her off of Aricept, and didn't even say why, I pursued it and did not get a satisfactory answer, instead he put her on a drug, that when I got it filled...I read the warnings,(I do that with all Med) and I also go on line and get all the info I can get (which by the way...we absolutely should get to read THE BLACK BOX WARNINGS) but this certain drug said do not give to people with dementia..it will shorten their lives..I couldn't believe that a neroligest,that I regarded highly, would do that... listen folks...no matter what dementia your loved one has...RESEARCH, RESEARCH, RESEARCH....don't take everything for thr gospel that tour Dr says..a lot of them don't know what they are talking about...and when they whip out their little blackberry and start researching, DUH, find a Dr. that know's...and has compassion, fire your other one, and get one that cares, and will be very up front and honest with you to the best of their ability..but make sure that ability is in the dementis area your loved one is in....I did not give my precious lady that drug. I admire each of you that are taking care 24/7..every 5 minutes...also take a break, it is so important...hard to do, but very important.

    - Dave

  • September 6, 2012 3:20 p.m.

    My wife takes Namenda. Helpful or not? Thank you

    - nick

  • September 6, 2012 3:00 p.m.

    I agree with Sandy. After we gave our mother help with a medicine, her life improved so much because of less anxiety. Put your self in that person's shoes - would you want to be scared all the time? Over-medication is not the answer. But it is silly to think a nursing home cannot use any medicatons to help their residents who have that extreme anxiety or extreme behavior. Live with it 24/7 and you may change your mind.

    - Martha

  • September 6, 2012 2:38 p.m.

    It is important to recognize that certain behaviors will not change with use of anti-psychotics. Yelling, wandering, and resisting are not psychotic behaviors. It would be helpful to point out what are such behaviors that might warrant consideration of those drugs.

    - Beth

  • September 6, 2012 2:29 p.m.

    What a load of horse hocky. Just what we need, the government to tell us how to care for our loved ones because they have so much experience. Come and live with me for a month or two, caring for my wife who is slowly dying of Alzheimer's disease. We are not statistics to be manipulated to promote an agenda. I hate this disease but I hate those who have studied it but have no real exparience to enhance their opinions.

    - Larry

  • September 6, 2012 2:09 p.m.

    Thanks for sharing Dr. Phillips' comments with us. My dad has a wonderful psychiatrist who has patiently explained to us throughout this dementia process--that my father's behavior can be managed most of the time through controlling his environment. Sometimes that means providing reassurance, agreement, silence, change of scenery, or just listening to him. For those times when the behavior is spiraling and unmanageable for whatever reason, we have a low dose medication that we can give to calm him. So far that medication has been used only about once a month. Thank God for doctors who take the time to educate caregivers.

    - Karen

  • September 6, 2012 2:08 p.m.

    I work in a dementia facility and have a mother in the early stages of Alzheimers. I typically care for over two and a half to three dozen patients during my nursing shifts. I am well trained in dementia care and have the deepest regard for our residents and their families. Antipsychotics are used for a reason. Its almost always about the safety of both the staff and other residents. My staff, nursing assistants, each care for seven or eight patients at a time. Unless you have some magical box from which this nation can pull more money to increase our staffing ratios towards that one on one (or even one on three!) individualized 24/7 compassionate care you advocate, the dream is unrealistic. We do a fantastic job and our training has improved dramatically over the last decade. We are successfully managing many patients with caring interventions! Still, when staff are being hit, even bitten, I have no problem with a physician's choice to quell the behaviors via prescriptions. Dr. Phillip's, come join our floor and put in a few dozen 8 or 12 hour day dressing, toileting, feeding and redirecting. Then you may agree that a compromise is knowing being chosen. My staff's safety matters. I will always advocate for anticipating needs and managing our patients in ways that support their emotional security and full comfort. Recognize that sometimes antipsychotics and anxiolytics are the only affordable tools for care providers. Where do you suggest we get the funding to do otherwise?

    - Jenna

  • September 6, 2012 2:06 p.m.

    I remember how mothers were blamed for the behavior of their children afflicted with schizophrenia in the 1950’s. The National Institute of Health did research on schizophrenia by recruiting several families to live in their hospital and be observed over one year. Thanks to the NIH doing research on schizophrenia it was proved the mother was not to blame! The medications haldol and thorazine emerged as first line of treatment and were given to patients in mental institutions. As a result of those drugs; institutions were emptied. Whatever happened to the ex-residents! Did they all die due to the meds? The realistic view would seem to be that co-morbidity of other medical conditions in the older patients is what brings death. In such situations there is need to treat physical and mental pain. It is time for well designed research on the medicines we have …not what we hope to discover. Who knows maybe simple pain meds would be the best calmer? What is the optimal dosage and regimen of thorazine for dementia? Then and only then, CMS can appropriately remove psychotropic drugs from their prescription list for dementia.

    - Marie

  • September 6, 2012 1:33 p.m.

    A close relative had delusions that someone was trying to kill or harm him or our family. He did not get any sleep checking to see if the doors were locked & that no one was outside. After trying several different medications, the doctor prescribed a very low dose of abilify to try. Abilify is a drug that is not approved for dementia! It was a miracle - he had no more fears of being harmed! I feel that all medications given to dementia patients have to be monitored closely by loved ones/caregivers until one is found to alleviate or stop the symptoms which are troublesome/disturbing.

    - Carla

  • September 6, 2012 1:18 p.m.

    My Aunt had LBD LEWY BODY DEMENTIA" this dementia is fatal and Antipsychotics actually were found to make her symptoms much much worse and unbearable for her to live with. Please, please, please educate yourselfs on this very dibilitating fatal Dementia and what these drugs can do for the people who suffer from this horrible disease. Most Docs and Nurses dont know about Lewy body Dementia so please share this info. For more info about LBD please go to LBDA.ORG and learn. Thank you soooooo much as this disease needs global awareness!!

    - Kimberly

  • September 6, 2012 12:53 p.m.

    My husband has Alzheimer's and the doctor calls it mild but from what I experince I wonder just what mild means. From the report by Angela Lundi I am thankful for the information and the comments posted. Only the caregivers know. God bless us all.

    - Shirley

  • September 6, 2012 12:40 p.m.

    I agree with both sides. My husband has dementia and has for 14 years, and thank goodness for the drugs that have helped him and myself as the caregiver to continue to take care of him at home in the evenings and on weekends. We also need to be the advocate and make sure we understand the drug and know and be aware of the side affects. I have learned thru this process to be far more involved and comfortable with challenging the doctor on some of these prescribed drugs. The dr. really doesn't see the patient 24/7 as the caregiver does. I'm amazed at how some of the specialists seem to think they know my husband's behavior and really aren't that open to listening what really takes place on a day to day basis. It takes a lot of research and being on top of things in an already difficult situation, but in the long run it's best for all.

    - Judy

  • September 6, 2012 12:32 p.m.

    I agree with you Sandy 100% they have no idea what it is like to deal with someone with dementia 24/7. My mom needed those medications for my dad to stay sane.

    - Diane

  • September 6, 2012 12:26 p.m.

    I must say "amen" to Sandy and Steve. And I also second the observation that those who dispense advice most likely do not act as caregivers 24/7....or they would not have time for such careers.

    - Carolyn

  • September 5, 2012 10:19 p.m.

    Just a "soft"comment to Sandy, and other caregivers... As Dr John Richard Taylor PHD , a "student of memory loss"as "myself",he states... "We are not 1/2 empty"..."We are not 1/2 full" "We are Whole people" We will end up a shell of our former selves. We need "enabling" "not disabling". I believe Angela and Dr Phillips may be trying to help people with this devestating disease to keep the "faculties that are still available" to us, and not have them end our lives earlier than they should....because of medication. These medications "alter moods" and have extreme side affects. They can inhibit the small amount of "cognitive thinking" there may be left. My family personally experienced it with my father,when his"Haldol" was discontinued.... This was over 25 years ago...when doctors didn't know what they were dealing with, but it's not the dark ages anymore. I am stating, and have documented already,I am not to be given drugs of that sort....because I want to and have a right to die of natural causes and not medication side affects.Persons with cognitive loss, and early dementia, and their families need to sit down and plan these things, there is no guilt then...on anyone. Angela is an extrodinary person, we have had the privilage of meeting her and spending time with her, she is a wonderful advocate for persons with cognitive loss and dementia.As I have becom

    - Catherine

  • September 4, 2012 10:13 a.m.

    Angela: Normally I agree with you, but I think Steve is right. Most care facilities and families try to meet the unmet needs of the patient, but sometimes they just can't due to the progression...and you should know that. And yes, families who have their loved ones facilities will come in and demand, but caregiver's who are with their spouses 24/7 will understand the need for drugs to help alleivate some of their anger or the anxiousness. Your comments that for every 53 patients, one will die..for every 25 patients that benefit from antipsychotic drugs, one will die. They all will die of this disease it's just a matter of when, and to be frank, caregivers who have been living this illness for many years...this is a blessing both for the patient and the caregiver. Medical experts can say all they want about they think we should do, but when you are living with someone day in and day out, trying to meet their every "need", as your blog suggests, but fail time and time again, drugs may be necessary. It's obvious you have not lived with someone 24/7 trying to meet their needs! Sandy

    - Sandy

  • September 1, 2012 9:46 a.m.

    I sent the FDA a complaint about this after my father died. The Dr's administered Risperdol over 7 years to my father and he died because his muscles became stiff and he couldn't swallow any longer. Muscle stiffness is a side effect for this group of drugs. It is an anti-psychotic and shouldn't be used for over 2 or 3 months. I asked many times if we could take him off and they always told me no. I later found out that it was an off label use.

    - Kim

  • August 31, 2012 10:15 p.m.

    I work in a nursing home where we work hard at being compassionate. We try non-medicinal approaches first. But ther are many times when we need a medication to help manage behavior. It doesn't treat the dementia, psychosis etc-it sedates them enough for life to be manageable In an institutional setting. Yes, more staffing, better approaches, etc might diminish this need a bit. I do think that antipsychotics can easily be overused but they are not evil. They do help us manage and I don't know of a better drug alternative. Articles like are taken by families to say we shouldn't be using these drugs at all. Even when we are using them responsibly, they come in after reading something like this and demand a drug stopped. Too often we then have "hell" to pay when behaviors spin out of control again.

    - Steve

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