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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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  • May 3, 2013 8:34 a.m.

    My husband is 8 years into Alzheimer's and in Stage 6. He began having dementia in his late 50's so has the early onset type Alzheimer's. He had been on Aricept and Namenda for years. Also he takes 15 mg of Mirtazapin (anti-depressant) 3 times a day...this was prescribed when he began hallucinating during the night. His behavior became aggressive and 50 mg of seroquel was added. That helped and when his aggression increased the seroquel was increased to 150 mg. This increase first caused real constipation, and then he could not urinate for over 24 hours. I read online that is a side affect of the increased seroquel dose. I took him off all seroquel and he was able to urinate. Three weeks ago we were running low on aricept and namenda and several RNs had told me he would reach a plateau where the drugs would no longer work. Well, after 8 days of no aricept, namenda, or seroquel (even with mirtazapin) he was totally unmanageable, knocking on the windows, trying to get out, etc. So, kind readers, I found there is a reason to keep him on those meds. Back on aricept, namenda, 50 mg of seroquel, and the 15 mg 3 times a day of mirtazapin he has leveled out. This was our experience and hope it helps.

    - Lee

  • May 2, 2013 12:39 p.m.

    My wife, with early onset(identified at age 57) was having anxiety related to hallucinations. She had no peace. She was prescribed antipsychotics at a low dose and then they were increased until the hallucinations stopped. She has more peace now. She also sleeps all night now, and I can care for her if I have 6-8 hours of respite a day. I prefer to care for her as I think she gets more individual attention, and I can manage her happiness better if I am with her one on one. I am thankful every day we can spend our time together.

    - Steve

  • April 21, 2013 10:40 p.m.

    My mom is on Aricept, Namenda, Seroquel (25 mg a day, low dose, an anti psychotic) and mirtazapine, an anti depressant. She is doing much better now that her anxiety has been alleviated by the seroquel. Night and day in her behavior. Calm, more positive outlook, much less obsessive behavior. I think the Seroquel is treating symptoms that were made worse by Alzheimer's.

    - Denise

  • April 18, 2013 2:16 p.m.

    My 85 year old husband's memory started to decline noticeably 3 years ago. The Dr prescribed atipsychotic drugs, I gave him one pill. Needless to say, he had a very bad reaction, right away we knew this is not the right treatment for him. 2 months ego he ended up in the hospital, and the staff Dr., who knew my husband for about 3 minutes, prescribed the same drug he was on before. Being Easter week-end, my husband was transferred to a LTC facility, where I have demanded the stoppage of this drug. Within 2 days, he looked better had no more adverse reaction. Sorry to say, his memory is declining, he is not violent, he is very placid and quiet. Happy? None of us are, we are just coping with this sad happenings in our family. By loving him, and showing him that we care, he might feel a little more secure in the facility he is in. We will not abandon him, and reassure him of this every time we visit him.

    - Maria

  • March 20, 2013 9:51 p.m.

    Ativan is a benzodiazepine-in the same class of drugs as valium. An antipsychotic is a medication like Haldol, By the way, the number one reason patients with dementia go to LCF's is that the caregiver-the caregiver-does not get enough sleep. So, dear caregivers, get another family member to help you by doing a couple of overnights so you can get some much needed sleep..

    - Michael

  • March 11, 2013 6:01 p.m.

    What types of antipsychotics drugs are used with Alzheimers patients? Also would Ativan be considered an anitpsychotic?

    - cyndy

  • March 8, 2013 5:37 p.m.

    to Sandra, your mum need other medication. Please speak with her doctor, because the medication is connected bad. You can also try, when your mum drinks coffee, give her this in the evening. When your mum sleeps, please take also a nap. So you have more energy.

    - Susanngab

  • November 18, 2012 8:33 a.m.

    My mum does not sleep even with medication,can you tell me how to carry on next day with no sleep

    - sandra

  • November 13, 2012 9:42 a.m.

    My Mom is in a Nursing Home because a Memory care unit is unavailable in my area that takes medicaid. I was lucky to place her in a nursing home and only then by Dr's orders. I took care of her for 3 years until she began to fall. The facility is good and they do try, but again, they are understaffed. My Mom's problem is that she does not SLEEP and when she does not sleep, she sometimes hits people, not hard, but that can not be treated. They now want to place her on an anti-psychotic and from what I have read, it is not safe. My Mom is on the go, in a Jerry-chair(like a baby walker for adults) and she will go for 22 out of 24 hours. Trazadone just does not help at 50mg. I know something must be done, but I don't know what. I don't want her to be sedated all the time.. she is not in the last stages of AL where others have been. I appreaciate all the work that the CNA's do at all the NHs. Their work is hard and vastly underpaid. I try to make sure that those that take care of my Mom know how much I appreciate them because after all, they are her best friends in that place. I just need a drug that will help calm her down and let her sleep. Karen, if you read this message, please reply with the name of the drug used to calm your father down. My Mom is 84yrs young, is healthy, except for the AZ & I want to keep her that way. We read children's books together and put puzzles together. Please email with any suggestions.

    - Linda

  • September 29, 2012 11:56 p.m.

    "Quality of life is more important than quantity at this point." I could have written the post prior to mine. And truer words were never said as quoted.

    - Sue

  • September 24, 2012 7:51 p.m.

    My mother is in the late stages of Alzheimers - she is at home with her partner who is her care giver - but she is waitlisted for every decent LTC facility in our community. Memory care nursing home and regular nursing home. She was on a wait list for a memory care assisted living and by the time she had an opening - she no longer passed their intake assessment as she requires too much help to eat. She is extremely paranoid at night, hallucinates and speaks to people who are not there. She is afraid that people are coming in to do harm to her. She doesn't sleep hardly at all. Therefore - her primary caregiver gets almost no sleep. She goes to Adult Daycare several days a week for about 6 hrs a day. She has been talking about wanting to die for months now. She has just recently been put on a very low dose of anti-psychotic med. I pray that it allows her some peace at night and some break from her paranoia and hallucination. I don't believe you can redirect her away from her paranoia and hallucinations. We have tried time and time again and it frustrates her more. I don't believe that there is a behavior modification that is going to convince her that the things she sees when hallucinating are not real. It only frustrates her more when you try to behaviour modify her out of believing the things she believes are true during these episodes. This is a terminal disease like a few have pointed out. Quality of life is more important than quantity at this point.

    - sue

  • September 23, 2012 7:37 p.m.

    my mother has been treated for dementia since 2003 she was in hospital and nursing vocational rehab was put on 50 mg of trazadone and treated for uti the medicine, had a worse side effects and i will not give her them just her namenda and aricept and she is much better

    - belinda

  • September 18, 2012 7:31 p.m.

    Anastasia, it takes a special type of person to be an effective and compassionate caregiver for people with dementia. I will be the first to say that nursing home staff do not get paid well enough for the important job that they do. However, your blog post sounds like you neither have the compassion or the education to continue working with people who suffer from advanced dementia. Please get out of the profession so I don't have to worry that some day you may be caring for my loved ones.

    - E

  • September 15, 2012 9:24 a.m.

    As someone who has worked with dementia patients for years, I have one word of advise for loved ones. Get your cna license. Work with dementia patients for about 3 months. Then get back to me. On a daily basis, I get at least the following. Spit on, punched, pinched, scratched, kicked, screamed at, cursed at, urinated on, feces thrown at me, bit,etc..Not to mention, residents who do not understand that they can no longer walk without assistance, and continually get up and are at risk for falls with injury.Some attack other residents. Many cases, no amount of consoling, or one on one attention is helpful. They simply do not comprehend.In some cases, medication is the only effective resort.

    - Anastasia

  • September 11, 2012 10:07 a.m.

    Cora, I am saddened to hear of poor, and now, contentious communication between you and your mother's care facility. Certainly, you needto feel comfortable that she resides spmewhere that you and the staff can trust and work as a team. Before you simply move your mother to another assisted liviing facility, consult a geritrician or neurologist to clarify your mother's condition(s). With that consultation, you may find cause to research memory care facilities for your mother, not just a different general assisted living facility. Perhaps a more appropriate level of care in a dementia dedicated facility is what she needs to stabilize without haldol? As your mother ages, her abilities and needs will change. She may now need more support, and a different armosphere than general assisted living staff can provide. Posters here have expressed frustration, but driving emotion your post is your love for and dedication to your mother. Allow that to keep driving your search and you will find better care for her.

    - Jenna

  • September 9, 2012 12:36 p.m.

    We're new to this our 93 yrs old has all the symptoms of sundowning and combative the community was giving her gel of ABH? The place where she is wants here to be discharged to neurological Community of which my family is opposed for such move. Every negative she does is being written up. And recently while we were looking for an assisted living community. Where she can be moved to flatly denied her admission because according to the FL-2 report she receives two shots a day for HALDOL. Which is NEWS to us and I'm livid about it. I'm on to the next assisted living community and requested the FL-2. And requested that shot should not to be administered. I'm awaiting for the outcome next if she could be admitted to this brand new community. So help me God

    - cora

  • September 8, 2012 7:36 a.m.

    I have been caring for Mom for over three years with Alz, and she is with the Exelon Patch and Namenda, in addition to other pills, but these two are working very well. I take things day by day.

    - Lindavuv9k4

  • September 8, 2012 3:48 a.m.

    My mother has dementia and lives at home with me working and a helper. Without a low dose of the antipsychotic, life would be intolerable. We waited a long time until we even acknowledge that she might have the disease and finally got the diagnosis. The medication is vital for everyones nerves, the patient and the caregiver. The trick is to manage the dosage with a caring geriatrician....

    - H.

  • September 7, 2012 10:41 p.m.

    As a personal care associate/medication associate(for many years) in the memory support unit at an assisted living facility, I see first hand the use and misuse of antipsychotic drugs(as well as other drugs) used in treating people with dementia. All drugs have their place and SOMETIMES these drugs are the only option. However, over the last few years, in our facility we have been fortunate to witness a reduction in the need for these types of medication since we began implementing a remarkable technique called 'validation'. This amazing communication technique is based on a book written by Naomi Feil entitled "The Validation Breakthrough". The simple techniques of validation are easy to learn and take just a few minutes a day to implement. Conflict and stress can be diminished by validating elder's feelings rather than focusing on the elder's confusion. Caregivers who use this technique (instead of reality orientation) can break through the silence and pain of withdrawal and interact with compassion and greater respect for older adults with dementia. This is an essential resource for families, friends, neighbors, home health aids, doctors, nurses, social workers and long term care staff living or working with people with dementia. It will change how you view people with dementia. The need for medications will diminish and relationships with loved ones or clients will improve!!

    - Chris

  • September 7, 2012 8:38 p.m.

    Thank you Don for your comment. I appreciate your statement. She is off of Aricept and takes Namenda .

    - nick

  • September 7, 2012 1:30 p.m.

    We take better care of our loved ones than anyone else. If we must place our loved one in a memory care unit, one must be vigilant to see that our loved one is being properly cared for. In my opinion, nursing homes are NOT appropriate for dementia patients!

    - Carla

  • September 7, 2012 10:41 a.m.

    My husband will die because of dementia. He is in the late middle stage. I have had to quit my job as a nurse in order to take full-time care of him. We cannot afford an ALF and he is not eligible for a nursing home at this time. He hallucinates at times, is very delusional most of the time and paranoid often. If and when he becomes combative, I want a medication to calm him down. If that shortens his life by a bit, that's ok. That's better than my family or myself being injured by him. He's dying anyway. I have a couple of suggestions regarding medications and placements in facilities based on my professional experience as a psychiatric RN, working with psychiatrist and being in and out of various ALFs and skilled nursing facilities. 1-Only let a psychiatrist, geriatrician, or other prescribers experienced in working with elderly people prescribe meds. The elderly dementia patients need much lower doses. Certain antipsychotics are better than others for our loved ones. 2-Put your loved ones in a dedicated memory care unit, not a general facility. When you take the tour of a facility, given by marketing staff or admin staff, talk to the staff on the memory care unit and see if they are too stressed or have time to talk to you or at least smile and greet you. The attitude of the staff on the unit (nurses, techs, kitchen staff, maintenance staff) is very, very important.

    - Bonnie

  • September 7, 2012 9:57 a.m.

    I too am a care giver of both parents 24/7. Dad has ALZ along with other medical issues associated with old age. He is on aricept and namenda and in the end stages of his disease. I have commited to mom and dad no anti psycotic drugs and am so glad I did because how can you monitor things like those silent UTI's that can be so harmful to those that can not communicate how they are feeling or what they are experiencing.

    - lisa

  • September 7, 2012 5:28 a.m.

    My husband spent two months at a “no chemical restraints” facility considered top notch, self pay; while I took charge of selling the house and getting our affairs in order. When I visited he was quite agitated and I sensed something was not right. We sat at the end of the hall and watched his room. I figured out was going on. Throughout his day, he would return to his room to find other residents sleeping in his bed, his clothes missing, his roommate using his electric razor. The staff called this “shopping”! Added to this the staff would “wake him every hour” at night (the law) to make sure he was still alive! He was unable to make sense of others behaviors, became sleep deprived, distressed, agitated and angry. I feared he would lose control and the police would be called. He would end up charged with assault and jailed. (check the admission packet fine print about this) I never thought to put funds for “bail” into our financial planning.

    - marie

  • September 7, 2012 2:50 a.m.

    I am 73 yrs old , attending regularly office &having daily interaction with persons, find lapses in memory. I find difficulty in recalling past events. Of late I find difficulty in recalling even recent happenings. Can anybody incate causes & treatments etc.

    - YOG RAJ

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