Specialized Information for:
Long-Term Care ConsumersFamily MembersAdvocates
The Consumer Voice is actively fighting to end the misuse of antipsychotic drugs as chemical restraints. Our campaign seeks to address this problem through:
Click on the links above to learn more about each aspect of our campaign. Click on the links below to find more information on the topic of the misuse of antipsychotic medications.
Residents of long-term care facilities are increasingly being placed on antipsychotic medications despite having no proper diagnosis to warrant their use. In 2016, 16.1% of nursing home residents were given antipsychotic medications. Use is much higher among residents with dementia - the very individuals that the Food and Drug Administration (FDA) warns are at serious risk of medical complications and death from taking antipsychotics. The Society for Post-Acute and Long-Term Care Medicine found in a 2016 study that 68% of residents with dementia across 57 nursing home facilities were given antipsychotic drugs. In addition, far too often the dangers of these medications are not even discussed with residents and their families and are administered without consent.
The misuse of antipsychotic medications in nursing homes can harm long-term care consumers in many ways. When used inappropriately among nursing home residents, antipsychotic medications can:
Place Nursing Home Residents at Increased Risk of Injury, Harm and Death: Antipsychotic drugs, when prescribed for elderly persons with dementia, can have serious medical complications, including loss of independence, over-sedation, confusion, increased respiratory infections, falls, and strokes. In fact, one study found residents taking antipsychotics had more than triple the likelihood of having a stroke compared to residents not taking these medications. Even worse, antipsychotics can be deadly; in 2005, the Food and Drug Administration (FDA) issued “Black Box” warnings for antipsychotics stating that individuals diagnosed with dementia are at an increased risk of death from their use and that physicians prescribing antipsychotic medications to elderly patients with dementia should discuss the risk of increased mortality with their patients, patients’ families and caregivers. The FDA has also stated that these medications are not approved for the treatment of dementia-related psychosis, nor is there any medication approved for such a condition.
Be Employed as a Chemical Restraint for Nursing Home Residents: A chemical restraint is a drug not needed to treat medical symptoms and used because it is more convenient for facility staff or to punish residents. Although the Medicare and Medicaid programs prohibit chemical restraints, antipsychotic medications continue to be used for residents with dementia as a means of behavior control and/or as a substitute for good, individualized care. For this reason, it is important to ensure these medications are being used only when appropriate among residents with proper diagnoses for psychotic disorders.
Destroy the Quality of Life and Dignity of Nursing Home Residents: Antipsychotics can be so powerful that they sedate residents to the point where they become listless and unresponsive. Residents may be slumped in wheelchairs or unable to get up from bed; they may no longer be able to participate in activities they enjoy or even talk with their loved ones.
Cost All Long-Term Care Consumers Billions of Dollars: These medications often come with a hefty price tag, so the misuse and overprescribing of antipsychotics in long-term care facilities is extremely costly for the Medicare and Medicaid programs as well as for taxpayers. Ending the misuse of these medications among nursing home residents would help save precious health care dollars that could be used to serve beneficiaries. According to the Office of the Inspector General for the Department of Health and Human Services, more than half of atypical antipsychotic medications (a class of antipsychotic medications that work significantly differently from older, previously introduced antipsychotics) that affect at least 105,000 nursing home residents annually are being incorrectly paid for by Medicare, despite the drugs being deemed ineffective and potentially dangerous for the elderly population. Ending the misuse of these medications among nursing home residents would help save precious health care dollars that could be used to serve beneficiaries.
There are a number of alternative approaches that can be used to care for residents with dementia, such as:
The individual is exhibiting behavioral symptoms such as:
If the individual has been showing any of the behavioral symptoms listed above, ask what has changed.
As mentioned previously, the Consumer Voice is engaged in a multi-faceted campaign to end the misuse of antipsychotic medications in nursing homes, including the following:
The Consumer Voice, along with several groups, has provided input and feedback to the Centers for Medicare and Medicaid Services (CMS) on the agency’s National Partnership to Improve Dementia Care and Reduce Unnecessary Antipsychotic Medication Use in Nursing Homes. Advocacy efforts have included submitting written comments to CMS on its draft guidance to surveyors about regulations regarding antipsychotics and dementia care and its new surveyor, as well as meetings and conference calls with CMS top officials. In May of 2013, CMS released its new survey guidelines for antipsychotic medications, which can be read here.
In October 2011, the Centers for Medicare and Medicaid Services (CMS) announced that the agency was considering regulations that would require nursing homes to hire independent pharmacists to assess residents’ prescriptions. The regulations would have required consultant pharmacists in nursing homes to be free of conflicts of interests so they could make drug recommendations based on what is best for the resident – not what’s best for the pharmacy companies or drug companies.
In November 2011, the Senate Special Committee on Aging held a hearing entitled Antipsychotic Drug Prescriptions in Nursing Homes. Government and private sector officials testified on the use of antipsychotic drugs on dementia patients in nursing homes and long term care facilities.
In April 2012, CMS decided NOT to publish the rules regarding independent pharmacists (click here to read CMS's comments on this decision). CMS instead launched the “Partnership to Improve Dementia Care Initiative” in May 2012, which sought to reduce the misuse of antipsychotics among nursing home residents by 15% by the end of 2012 (click here to read more about this CMS initiative.) The Partnership failed to meet its reduction goal by the end of 2012, only doing so in early 2014. Although the Consumer Voice commends CMS for launching this effort to reduce the misuse of antipsychotics, our organization strongly supports the implementation of federal regulations regarding the independence of consultant pharmacists and will continue to call on CMS to publish formal rules on this matter.
In addition, the Consumer Voice submitted recommended changes to federal regulations for long-term care facilities that would strengthen protections for residents and require informed consent before residents are prescribed antipsychotic medications. These recommendations can be read here.
Toolkit
The National Long-Term Care Ombudsman Resource Center – funded by the Administration on Aging (AoA) and operated by the Consumer Voice – has developed a toolkit in part through a grant from AoA on the misuse of antipsychotic medications among nursing home residents. This toolkit contains take-away resources for consumers, family members and advocates describing how to recognize symptoms of the improper use of antipsychotics; the rights of residents under federal nursing home laws and regulations; and what consumers, family members and advocates can do to combat this problem. The contents of the toolkit include the following:
Misuse of Antipsychotics Issue Sheet
Misuse of Antipsychotics Issue Sheet (Spanish)
Misuse of Antipsychotics Issue Sheet (Chinese)
Promising Practices to Reduce the Use of Antipsychotic Medications
The Interpretive Guidelines: A Tool for Advocates
The Interpretive Guidelines: A Tool for Advocates (Spanish)
The Interpretive Guidelines: A Tool for Advocates (Chinese)
Information About Inappropriate Drug Use for Long-Term Care Consumers (Postcard)
Information About Inappropriate Drug Use for Long-Term Care Consumers (Postcard in Spanish)
Information About Inappropriate Drug Use for Long-Term Care Consumers (Postcard in Chinese)
You can purchase a hard copy of the Toolkit, containing all of the above components plus five printed postcards and a disk with electronic copies of all of the resources, from the Consumer Voice store. You can also purchase the postcards separately in packs of ten from the Consumer Voice store and pass them out to consumers, family members and advocates!
Webinar
In September 2012, the National Ombudsman Resource Center hosted a webinar entitled "Ending Misuse of Anti-Psychotics in Long-Term Care." This webinar included a discussion of the dangers and signs of inappropriate psychotropic drug use, successful alternative person-centered treatments and therapies, resources for more information and current national and state-level efforts to reduce inappropriate medications. Expert speakers included Mary Evans, a Geriatrician/Medical Director; Morris Kaplan, a Nursing Home Administrator; and Claire Curry, a Consumer Advocate. The speaker presentations (in PowerPoint and PDF form) can be accessed below:
Mary Evans, MD CMD - President, Virginia Medical Directors Association
Morris Kaplan, Esq., NHA - President, Kaplan Health Management, LLC and Operating Partner, Gwynedd Square Nursing Center (please note that the videos have been deleted from this version)
Claire Curry - Legal Director, Civil Advocacy Program of the Legal Aid Justice Center
Also, a recording of the webinar can be downloaded here.
A study published in 2016 reported that the most commonly used antipsychotic medications in nursing homes is Risperdal, followed by Seroquel and Zyprexa.
The Centers for Medicare and Medicaid Services (CMS) Nursing Home Compare Website - This resource allows users to research data on individual nursing homes, including the percentage of residents receiving antipsychotic medications under the section entitled 'Quality Measures'. It also lists the state average and the national average of antipsychotic use in comparison to each individual nursing home's data.
ProPublica's Nursing Home Inspect Website - This resource allows you to search nursing home inspection reports listing deficiencies cited in nursing homes nationwide. You can search by state, severity of the deficiency and by keyword (i.e. "antipsychotic") to find deficiencies related to the inappropriate use of antipsychotic medications in individual nursing homes.
Avoiding Inappropriate Use of Antipsychotic Drugs: Knowing Your Rights Webinar (December 2019)
Materials
It’s well documented that the use of antipsychotic drugs, when prescribed for elderly persons with dementia, can have serious medical complications, including increased risk of injury, harm, and death. So what can an individual, or their family member do, if they have questions or concerns about the use of these drugs? When is their use warranted (hint – there’s a clinical diagnosis) and when is it inappropriate? This webinar included a conversation about individual rights related to the use of antipsychotic drugs, providing informed consent, and a family member’s perspective about the impact of these drugs. This webinar also shared resources and tips on getting individualized care, and where to go for help or more information.
Presenters: Kelly Bagby, Vice President on Health, Housing, Hunger, and Human Services, AARP Foundation; Robin Keller, Daughter of Bobby Tweed; and Lori Smetanka, Executive Director, Consumer Voice
Obtaining Quality Care for Residents with Dementia Webinar
Resources on Regulations
CMS Surveyor Training - This online training on the Use of Antipsychotic Medication by CMS for surveyors, includes three modules, Overview of Antipsychotic Medication Use in Nursing Homes, Surveying for Antipsychotic Medication Use in Nursing Homes, and Severity & Scope Guidance: Antipsychotic Medication Use in Nursing Homes.
Government Reports
Advocacy Resources
News and Media Resources