This was in the Times today. I'd love to see responses to this. My senator is on the Committee. I will relay your comments (anonymously, of course)
Federal investigators say they have found evidence of widespread overuse of psychiatric drugs by older Americans withAlzheimer’s disease, and are recommending that Medicare officials take immediate action to reduce unnecessary prescriptions.
The findings will be released Monday by the Government Accountability Office, an arm of Congress, and come as the Obama administration has already been working with nursing homes to reduce the inappropriate use of antipsychotic medications like Abilify, Risperdal, Zyprexa and clozapine. But in the study, investigators said officials also needed to focus on overuse of such drugs by people withdementia who live at home or in assisted living facilities.
The Department of Health and Human Services “has taken little action” to reduce the use of antipsychotic drugs by older adults living outside nursing homes, the report said. Doctors sometimes prescribe antipsychotic drugs to calm patients with dementia who display disruptive behavior like hitting, yelling or screaming, the report said. Researchers said this was often the case in nursing homes that had inadequate numbers of employees.
Dementia is most commonly associated with a decline in memory, but doctors say it can also cause changes in mood or personality and, at times, agitation or aggression. Experts have raised concern about the use of antipsychotic drugs to address behavioral symptoms of Alzheimer’s and other forms of dementia. The Food and Drug Administration says antipsychotic drugs are often associated with an increased risk of death when used to treat older adults with dementia who also have psychosis.
Senator Thomas R. Carper of Delaware, the senior Democrat on the Homeland Security and Governmental Affairs Committee, said the report showed that “many seniors with dementia are receiving risky mind-altering medications,” financed in many cases by taxpayers and the Medicare program.
Senator Susan Collins, Republican of Maine and chairwoman of the Senate Special Committee on Aging, who with Mr. Carper requested the study, said, “The report raises many red flags concerning the potential misuse and excessive use of antipsychotic drugs for patients with Alzheimer’s and other dementias.”
Toby S. Edelman, who represents patients as a lawyer at the Center for Medicare Advocacy, said, “We could save money and provide better care if nursing homes reduced the inappropriate use of antipsychotic drugs.”
I was doing okay today until I read this. I can't answer right now - I need to go outside and clear my head before it explodes. What I will say for now is - don't for one single solitary second think that this has ANYTHING to do with providing good care. It is about money. It always is and always will be. I'm willing to bet that not ONE of those committee members has ever had to deal with a family member who is a violent dementia patient.
It's always about money. Don't even get me started on this. The key to controlling Alzheimers behaviors is the medication. And medication costs money. So of course they want to cut back on the meds. Morons.
I certainly have a reaction to this. There will be a lot of spouse caregivers and nursing home caregivers dead (me for one) if they do this. Or there will be a lot of AD patients dropped off in the woods somewhere if the caregiver does live through the attacks. Or we'll be back to the old insane asylum days where people are kept in straight jackets or chains.
We just had a case here of one AD patient beating another one to death because the family pulled him off of a bunch of the drugs used to control his behavior.
This country just does not GET what is going on with the ramifications of this disease which is claiming more people every year.
To me I see it as either money for medications or money for more help - neither of which we all know the government wants to do. Nor the nursing homes for that matter!
I suggest that before drawing a line in the sand, people read the actual report. Since it has just now been released, is 50 pages long and full of statistical analyses, literature reviews, etc., I question whether anyone has done that. Here is the link:
http://www.gao.gov/assets/670/668221.pdf
As for the motives of the political figures mentioned, I’ve never heard of any of them except for Susan Collins, of Maine, who I am not that familiar with. I did look up the website of the Center for Medicare Advocacy, whose spokesperson said that nursing homes should reduce “the inappropriate use of antipsychotic drugs.” It looks like a private nonprofit that advocates access to Medicare coverage for older people and people with disabilities and represents people who have been denied Medicare coverage.
On a personal level, I am very wary of the off-label use of anti-psychotic drugs. More than two years ago, a friend in a nursing home was almost killed by Seroquel, which cured her agitation but turned her into a zombie. As a result of that experience, I am very worried about the prospect that such drugs will be recommended for my husband if his behavioral issues get worse. The geriatric care manger who has helped us assures me that these drugs are sometimes appropriate, so I will try to keep an open mind, especially since many spouses of people on this site have apparently been helped by them. To be frank, however, I have also been alarmed by reports I have read on this site about spouses who have received massive doses of these drugs and are still raging and hollering.
Considering the article references Medicare, "older", and "seniors" I am understanding that the cautions, for lack of a better word, do not address the ever increasing populations of younger dementia patients.
The medical professionals here would know better than I, but aren't some med dosages different for those over 65, especially in the loosely termed category of psychotropic meds? Were younger dementia patients involved in this report? My husband was rx Risperdal more than fifteen years before Medicare was an alternative for him.
It is my belief that big pharma is generally protected by the government. I don't think they would contribute gazillions without something in return.
abby*, Actually, in this case, it's Big Pharma on the one hand, and the government on the other hand. So choose you poison.
From what I read of this so far, the GAO's financial interest in this is Medicare Part D, but for some issues, it seems to also be using as evidence studies and reports based on other populations. I don't know if those studies and reports included younger people with dementia.
I agree with you that the report is hard to understand, since it contains so much technical stuff. But maybe some people on this site will be able translate some of it into plain English. I started to read the report and found it quite interesting, but I can't pretend that I fully understand everything and it will take me a few days just to read it.
I'm reading the report right now. The summary links together low levels of staffing in NH's with higher antipsychotic use. And the report points out that is less data on people living in ALFs or living at home. Since I have limited time right now I will type a summary as I read it.
The beginning of the report concerns methodology, which is important but boring. Medicare Part D provides a good source of data. They are excluding people with schizophrenia, bipolar and tourette's syndrome because there are antipsychotic drugs that are approved for these conditions. They are trying to focus on people with dementia and off-label use of these drugs.
Brief summary of non-medical actions that should be taken before the use of antipsychotic drugs.
"Federal law requires nursing homes to meet federal quality and safety standards, set by CMS, to participate in the Medicare and Medicaid programs. CMS regulations require nursing homes to ensure that residents’ drug therapy regimens are free from unnecessary drugs, such as medications provided in excessive doses, for excessive durations, or without adequate indications for use.25 Nursing facility staff must assess each resident’s functional capacity upon admission to the facility and periodically thereafter, and provide each resident a written care plan.26 Based on these assessments, nursing homes must ensure that antipsychotics are prescribed only when necessary to treat a specific condition diagnosed and documented in the patient’s record, and that residents who use antipsychotic drugs receive gradual dose reductions and behavioral interventions, unless clinically contraindicated. Part of the nursing home survey process, otherwise known as nursing home inspections, involves audits of these care plans and assessments."
So note the lack of regulations for none NH situations.
Some interesting stats about NHs. Men are prescribed antipsychotics more than women, around 1/3 are are prescribed these drugs. Prescription rate goes DOWN as the age goes up. Prescription of drugs various by region, highest in the south, lowest in the west.
Long stay NH residents are more likely to be prescribed these drugs than short term stay residents (under 100 days).
As expected people living outside of NH less likely to be prescribed these meds (healthier population). But outside of NH women more likely to be prescribed meds than men (opposite of within NHs). Outside of NH geographic location less important.
"The majority of experts we spoke with and some research articles we reviewed highlighted agitation, aggression, or exhibiting a risk to oneself or others as factors that contribute to the decision to prescribe antipsychotics. For example, in a study examining the MDS from 1999 to 2006 in eight states, 51 percent of aggressive nursing home residents diagnosed with dementia were prescribed antipsychotic drugs in 2006, as opposed to 39 percent of residents with behavioral symptoms but who were not aggressive during that same time period.32 The study suggested that aggressive residents may have been more likely to be prescribed antipsychotics because of the greater risk of injury associated with the aggressive behavior. This is consistent with findings from our analysis of nursing home assessment data; we found that, of residents diagnosed with dementia and documented as being a risk to themselves or others, 61 percent had an antipsychotic drug prescription in 2012."
"Many experts we interviewed identified other situations that may warrant the use of antipsychotics despite their risk, such as patients experiencing frightening delusions or hallucinations that cause the patient to act out in ways that may be violent or harmful. Several experts noted that individuals experiencing these psychotic and other behaviors may be suffering from distress and are more likely to be prescribed antipsychotic drugs to ease their distress and improve their quality of life. For example, individuals may injure themselves or strike another resident or staff member because of delusions that these people intend to kill them. A few research articles identified psychotic behaviors as a contributing factor. For instance, one study that examined medical records of more than 200 nursing home residents with dementia found that 47 percent of residents who were on an antipsychotic also had a diagnosis of psychosis."
The NH culture is an important contributor to the prescription rate. "Among nursing homes, experts and research cited factors, including the culture of the facility, the level of staff training and education, and the number of staff at the nursing home, as contributing to the decision to prescribe antipsychotic drugs to older adults. Specifically, nursing home leadership—such as administrators and medical directors—and culture were cited by half of the experts and two of the research articles. An expert told us that when the leadership of the nursing home believes it is broadly acceptable to provide antipsychotic drugs to residents with dementia, this belief spreads throughout the facility. One study examining variation in antipsychotic use in nursing homes looked at the pharmacy claims and nursing home assessments of more than 16,000 residents in 1,257 nursing homes.38 The study found that new nursing home residents admitted to facilities with high antipsychotic prescribing rates were 1.4 times more likely to receive antipsychotics, even after controlling for patient-specific factors."
What is scary is the high percentage of doctors, leaders and staff not familiar with use of med use with older patients with dementia. Direct staff not familiar with side effects. Where more training is done, use of such drugs is lower. One NH saw a 5% drop in use of drugs (from 20% to 15%) after training.
Staff ratio plays a role. The worse the staff level, the higher the use of meds.
"Finally, experts we spoke with indicated that caregivers’ frustration with the behavior of individuals with dementia can lead to requests for antipsychotic drugs. For example, an advocacy group we spoke with mentioned that a caregiver may request an antipsychotic drug for an individual with dementia in an effort to keep them in the home. The individual with dementia may not recognize their relative, which can cause them agitation. To keep the individual calm so that they can stay in the home and not be placed in a nursing home, an antipsychotic medication may be prescribed. Representatives from another provider group explained that when an individual with dementia has an unmet need, they may also appear to be in distress, which may cause the caregiver to become frustrated because they do not know how to relieve this distress"
HHS has addressed use of antipsychotics in NH to reduce use but not for people in ALFs or living at home.
"Under the National Plan to Address Alzheimer’s Disease, HHS has a goal to expand support for people with Alzheimer’s disease and their families with emphasis on maintaining the dignity, safety, and rights for those suffering from this disease."
"In 2012, CMS launched the National Partnership to Improve Dementia Care in Nursing Homes with federal and state agencies, nursing homes, providers, and advocacy organizations." We have seen reduction in use of antipsychotics in NH due to the Partnership, but success varies by state. There is a 5 star rating of NH for use of antipsychotics and only now are these ratings being included as part of the total rating of the NH.
"The National Partnership works with state-based coalitions and consumer advocates to educate and promote a re-thinking of dementia care in nursing homes, with a focus on person-centered care."
In feedback from stakeholders, some are very happy with results. Others are concerned that people who would benefit from antipsychotics might not get them because the NH might be trying to keep the percent down as much as possible because the statistics and ratings are public knowledge. "CMS officials told us that they are careful in their messaging to acknowledge that antipsychotic drugs have a useful prescribing purpose and therefore will never be totally eliminated. They are working with providers to develop a comprehensive view of what a patient potentially needs, emphasizing that using antipsychotic drugs should not be the first-line intervention."
Many stakeholders feel that the efforts aimed at NH should be duplicated for people outside of NHs.
"The decision to prescribe an antipsychotic drug to an older adult with dementia is dependent on a number of factors, according to experts in the field, and must take into account the possible benefits of managing behavioral symptoms associated with dementia against potential adverse health risks. In some cases, the benefits to prescribing the drugs may outweigh the risks. HHS has taken important steps to educate and inform nursing home providers and staff on the need to reduce unnecessary antipsychotic drug use and ways to incorporate non-pharmacological practices into their care to address the behavioral symptoms associated with dementia. However, similar efforts have not been directed toward caregivers of older adults living outside of nursing homes, such as those in assisted living facilities and private residences. Targeting this segment of the population is equally important given that over 1.2 million Medicare Part D enrollees living outside of nursing homes were diagnosed with dementia in 2012 and Medicare Part D pays for antipsychotic drugs prescribed to these individuals. While the extent of unnecessary prescribing of antipsychotic drugs is unknown, older adults with dementia living outside of nursing homes are also at risk of the same dangers associated with taking antipsychotics drugs as residents of nursing homes. In fact, the National Alzheimer’s Project Act was not limited to the nursing home setting, but calls upon HHS to develop and implement an integrated national plan to address dementia. HHS’s National Alzheimer’s Plan addresses antipsychotic drug prescribing in nursing homes only, however, and HHS activities to reduce such drug use have primarily focused on older adults residing in nursing homes. Given that HHS does not specifically target its outreach and education efforts relating to antipsychotic drug use to settings other than nursing homes, older adults living outside of nursing homes, their caregivers, and their clinicians in these settings may not have access to the same resources about alternative approaches to care. By expanding its outreach and educational efforts to settings outside nursing homes, HHS may be able to help reduce any unnecessary reliance on antipsychotic drugs for the treatment of behavioral symptoms of dementia for all older adults regardless of their residential setting."
Thank you Paul. I think we all will agree that doctors in general tend to over medicate patients. My MIL was on 12 RX. She went to a new doctor who took her off all and eventually she was on 3. I am fighting the doctor cause he wants to put me on a statin for a barely elevated cholesterol instead of encouraging lifestyle changes (which I am doing). Seems Americans (and maybe other countries) look to doctors for a pill to fix their problems. This has probably led to the over medicating dementia and other patients. I think back to mental hospitals where it was the norm to medicate to get compliance.
I am glad to see this brought up and be worked on. Often medications are needed, but not at the high dosages that make people a zombie!
I, like Joan, am angry. If it weren't for Seroquel I could never have kept my husband home for over eight years. A few months after being diagnosed he became aggressive. What would I have done without the medication? I was able to have him here, not a zombie. Until recently, he was cooperative. Without those meds he was another man altogether. He is in a long term facility now, just over five months, and I am grateful for the years I was able to have him home. I hate having him in a facility but now I have no choice. I simply cannot take care of him at home any longer. He is having some problems now with aggression and was sent to the hospital for psychiatric care. I am fuming about this. Why, in a locked-down dementia unit, can they not control him? The hospital visits just make things worse, not better.
Lock down does not mean they are locked in their rooms. It usually means they can not leave the unit without someone else usually the nurse unlocking the door. Unless they have enough staff for one on one, they can't be with them all the time. That is unfortunate, but it is the way it unfortunately is.
At my request my husband was put on large doses of Seroquel. He had FTD and there was no way of controlling his violence. He was in a locked dementia unit with a private aide and it didn't help. The drugs did.I knew the risks and made the choice.
Thanks, paulc. Your summary gave me the nerve to read this thing.
There seems to be a misunderstanding about what this Report says. It does NOT say that dementia patients should not be given anti-psychotic drugs. Nor does it make any recommendations for dementia patients in NHs. (I think the recommendations for NHs were part of the 2012 National Alzheimer's Plan.) This Report has only 1 Recommendation (on page 33):
• “We recommend that the Secretary of HHS expand its outreach and educational efforts aimed at reducing antipsychotic drug use among older adults with dementia to include those residing outside of nursing homes by updating the National Alzheimer’s Plan.”
In other words, the Report says that the same training and education that the govt. makes available to nursing home staff should also be made available to caregivers of dementia patients who live at home and in ALFs. This training involves educating people about the risks of antipsychotic drugs and about “non-pharmacological interventions” (which I take to mean things you can do other than giving them drugs).
So what is the “National Alzheimer’s Plan”? Rather than google it, I searched this site and found that it is a plan that was created by a law called the Alzheimer's Accountability Act. Two of our members, Coco* and texasmom, are familiar with it. You can read their comments on the thread called “Alzheimer’s Accountability Act.”
I found the Report to be very interesting reading. Of course, that may say less about the Report than it does about my need to “get a life.”
Thanks for bringing balance, Paul and Myrtle. I still am wary, and hope that any Congressional review includes plenty of testimony from caregivers such as ourselves, in the same way that the Congressional review panel on women's health included women. Oops, it didn't.
I agree and hope there can be a balance to the needs of all concerned to deal with an AD victim in facilities or at home. with high costs of both long term care and the expense of medicatiions I am sure the govt is looking for ways to reduce the huge upcoming burden on the system. that said, we as caregivers need extensive help in providing good care for our spouses. divvi*
What is sad: there are always new recommendations coming out but they cost money to implement - money that is usually not there. With this it takes more help.
I agree with Bev and bluedaze*. My husband has FTD and was 58, strong, good health and VIOLENT when dx'd. He was mostly a danger to me and others (physically hit them while in a psych hospital) and the psychiatrists in 2 psychiatric facilities put him on ant-psychotics. Did I want that? No, but NOTHING could control his aggressive behavior. The anti=psychotics have mostly controlled his aggressive behaviors over the past 6 years. I've told this story many times and need to repeat it again. Without the anti=psychotics my husband would most likely be in a psychiatric facility for the criminally insane because he would have severely injured someone or killed them (probably me).
He has been in 2 psychiatric facilities for his aggression and violence towards others due to his dementia. Funny, neither facility's staff was trained in how to manage dementia behaviors without medication. No Teepa Snow approaches there and one was a highly regarding private facility (which was HORRIBLE) and one a state run facility to my surprise was excellent (now closed because of state budget shortfall). He went from the private psych hospital to an ALF dementia unit which assured me they could handle him even though their residents were much older (20-35 years) and much further along in their disease. They could NOT handle him even on the anti-psychotics and he escaped or in ALF dementia language "eloped". They wouldn't take him back and thus the 2nd psychiatric facility.
Every professional involved with his care and well-being including drs, geriatric care managers, elder law attorneys, and local police told me he was too violent for "traditional" care. ALF's with dementia units wouldn't take him, when he had to rehab for a broken knee the local NH put him in a dementia unit because of his "Violent past 6 years ago". He can NEVER escape his past when he was violent and not on meds. He will always be labeled "violent and dangerous" even in facilities that are supposed to know how to divert, distract and calm. The reality is most don't. They are understaffed, the staff isn't adequately trained and can't spend more time on the difficult patients. There is definitely a place for the use of anti-psychotic drugs when they are needed. Given the choice I would rather have my husband on a reasonable dose of anti-psychotic meds than in a facility for the criminally insane because doctors do not know how to treat him, facility staffs are not trained and inadequate in numbers. And guess how they facilities for the criminally insane handle violent patients? They drug them with ant-psychotics and physical restraints.
I am passionate about this topic because without the meds, my husband would have little or no care options. He's been home for 6 years without incident and has a good quality of life considering his dementia.
LFL I don't peek in very often but your post really hit home. There are very few places that will take residents with a history of elopement and aggressive behavior. I found the psych facilities very lacking in their understanding of FTD.
Thank you bluedaze*, I know you share a similar journey and for those who have not been down this path they have absolutely no comprehension regarding the very limited options and real threats that our loved ones will be taken to some god-forsaken facility. For us, the anti-psychotics meds have been a god send and I know if/when he has to go to a facility it will be a battle to keep him there. Even tho he's in stage 7 now, he's still strong and mobile. I pray every night I won't have to place him and the doctors will continue to prescribe the anti-psychotics so I can keep him home and manage his care.
Bless you, you are an inspiration to me. FTD is a bitch.
Came here today and did a search for Clozapine as the doctors are staring to talk about trying that. This site is my "go to" for any information related to my husband dementia and he has FTD. He is in a specialized facility considered too violent for any regular long term care place, having been in two and sent back to hospital. LFL you said it perfectly, "FTD is a bitch."
Like others have commented here, I am truly disappointed how little staff know about FTD and seem to have little interest in finding out more. The short staffing is also a huge problem.
They have tried endless mixtures of medications. In my latest research on Clozapine, it is contra-indicated for psychosis secondary to dementia and with a history of seizures. My husband has both.
I read this whole thread and really appreciate everyone's thoughts. I am more comfortable now knowing that despite the risks with this potential new med, if it keeps my husband calmer and decreases the risk of his continued hitting of others, it is worth a try. Thank you.
For someone coming in at the end of this thread, here is a useful link that is mentioned earlier in the thread: http://memory.ucsf.edu/ftd/overview/ftd/treatment/multiple/medications-avoid
The ucsf.edu/ftd site has extensive and excellent information about FTD.
One difference between FTD and Alzheimers Disease is that FTD doesn't usually have memory loss until late in the disease.
www.ftdsupportforum.com is a supportive community that includes all caregivers, not just spouses.
katherinecs, I think you would find the ftdsupportforum a great help for practical advice from other carers. There are so many threads available that it can be overwhelming if you don't take it little by little. I hop-scotched reading at first. Now I use the 'New Posts' feature each evening and read what has been posted since the last time I visited. Much of it doesn't apply to my current situation, but it is informative to see what others are coping with and how they are handling things. I like knowing I have a source of knowledgeable support at the ready if I need it, the same as with this site. FTDSF has over 8000 members with 300 active members.