Help drugging victims by taking action against responsible parties!
One of the best ways to help stop the drugging of nursing home residents is to hold nursing homes and doctors accountable when they engage in this practice. If you, a family member, or friend has been harmed by misuse of antipsychotic drugs or other types of psychoactive drugs, here are actions you can take to fight the drugging and to seek justice.
Take legal action: Drugging of nursing home residents is not only dangerous, it is against the law. You can go to court to enforce the law and, if someone has been harmed, to seek compensation from those who are responsible. CANHR’s Lawyer Referral Service can refer you to a qualified elder abuse attorney. Call us at 1-800-474-1116 to discuss your case.
File a complaint against the nursing home: California nursing homes are licensed and inspected by the California Department of Public Health (CDPH). Although CDPH is a big part of the problem – it rarely takes strong action against nursing homes that misuse antipsychotic drugs and has fought legislative reforms – it is a good idea to file a complaint with it. The more complaints on drugging that are filed with CDPH, the more pressure it will face to take action. It must begin investigating your complaint within 10 working days, or within 24 hours if it involves imminent danger to a resident. Read CANHR’s fact sheet, How to File a Nursing Home Complaint, for instructions. Call CANHR if you have questions or if CDPH is not responding properly.
File a complaint with the Bureau of Medi-Cal Fraud & Elder Abuse (BMFEA): The BMFEA is a division of the California Attorney General’s office that investigates and prosecutes crimes against nursing home residents. Misusing antipsychotic drugs to chemically restrain nursing home residents can be a very serious crime, as evidenced by the BMFEA’s charge that the practice amounted to “assault with a deadly weapon” in a pending criminal case against a Kern County nursing home administrator, director of nursing, pharmacist and doctor. There are three ways to file your complaint: (1) Call the BMFEA at 800-722-0432; (2) File your complaint on-line at http://www.ag.ca.gov/bmfea; or (3) Mail a copy of your complaint to the California Department of Justice, Bureau of Medi-Cal Fraud & Elder Abuse, P.O. Box 944255, Sacramento, CA 94244-2550.
File a complaint against the doctor: When doctors order psychoactive medications (including antipsychotic drugs) without obtaining informed consent, they are violating the law. File a complaint against the doctor through the Medical Board of California.
Contact the media: Nothing gets a nursing home’s attention faster than the local media. Consider asking the media to help expose dangerous drugging practices.
Alert state legislators: CANHR is working to strengthen California laws against the drugging of nursing home residents. You can help by informing your state senator and assembly member about the inappropriate use of psychoactive drugs. Find your legislators at: http://www.leginfo.ca.gov/yourleg.html
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Please send CANHR copies of complaint letters and other correspondence at: CANHR, 650 Harrison Street, 2nd Floor, San Francisco, CA 94107-1311
Drugs should always be the last resort for treating behavioral symptoms of dementia, not the first option.
Nursing homes and doctors often excuse their use of antipsychotic drugs on their residents with dementia by claiming they “had no choice.” There is rarely any truth to this excuse, since there are better options for treating the symptoms of dementia.
For more information on helpful alternatives to the use of antipsychotic drugging, check CANHR’s guide — Toxic Medicine: What You Should Know to Fight the Misuse of Psychoactive Drugs in Nursing Homes.
Alzheimer’s Association ADvancing Care(TM), is a series of informative newsletters from the Alzheimer’s Association’s New York City chapter to guide family, friends, and caregivers in maximizing the quality of life of people with dementia. Topics include interpreting resistance to care, addressing sundowning, and enhancing mealtimes.
Encouraging Comfort Care: A Guide for Families of people with Dementia Living in Care Facilities, is a free online booklet published by the Greater Illinois Chapter of Alzheimer’s Association. The 21-page booklet provides helpful information to families and long-term care facilities personnel about care issues related to the late and final stages of dementia. Its focus is on keeping elders with dementia comfortable, and off unnecessary psychoactive drugs, by individualizing their care and anticipating their needs.
Dementia Beyond Drugs: Changing the Culture of Care, by Dr. Allen Power, is an excellent book aimed at caregivers and administrators in nursing homes and other residential facilities. First published in 2010, the book is available from Amazon.com and other web sources. For more information on Dr. Power, visit his website at: http://www.alpower.net/Pages/edenpublications.htm
Connecting the Dots, by Dr. Judith London, teaches several practical, nonpharmacologic techniques to maintain strong relationships and meaningful connections with people with dementia.
Nonpharmacologic Management of Behavioral Symptoms in Dementia, by Laura N. Gitlin, Helen C. Kales, and Constantine G. Lyketsos, Care of the Aging Parent: From Evidence to Action, November 21, 2012.
Bathing Without a Battle is an acclaimed book that focuses on one of the most common reasons nursing homes give for drugging residents: resistance to nursing home-style bathing. It describes thoughtful and humane approaches to bathing and was updated in 2008 to address other issues, including pain, skin care, transfers, the environment and determining the appropriate level of assistance. Its lessons about individualized care can easily be applied to other aspects of care. It is available from Amazon.com and other web sources.
Dementia Care: The Quality Chasm, by the Dementia Initiative, is a white paper examining dementia care in the U.S. The authors are critical of the current disease-centered/pharmacologic approach to treatment and instead tout person-centered care as the “gold standard.” The paper discusses the operational practices of person-centered care focused on meaningful lives for people with dementia and caregiver commitment to holistic approaches.
Model Programs and Facilities
The Dementia Action Alliance: This British coalition of government, advocacy, human service, academic and provider organizations is seeking to transform the quality of life of people living with dementia in the UK. In June 2011, it issued a strong call to action urging that all persons with dementia who are receiving antipsychotic drugs be examined to determine if the drugs are really needed and to ensure that alternatives to drugs have been considered. In support of its call to action, the Dementia Action Alliance has produced a best practice guide on optimizing care for behavioral symptoms of dementia. Additionally, the British Alzheimer’s Society has dedicated a section of its website to misuse of antipsychotics.
Beatitudes Campus, Phoenix Arizona: Beatitudes is a non-profit, church affiliated retirement community that features a dementia unit, Vermillion Cliffs, which is receiving national attention for its successful caregiving practices for persons with advanced dementia. The dementia training staff at Beatitudes is active in Arizona and national educational efforts to teach and promote humane care methods. Vermillion Cliffs was the focus of a prominent New York Times article on December 31, 2010: Giving Alzheimer’s Patients Their Way, Even Chocolate. Information on the Beatitudes Dementia Training Program is available at: http://www.beatitudescampus.org/aging-research-and-training/palliative-care-for-advanced-dementia-program/
Ecumen, Minnesota: Ecumen is a non-profit, church affiliated organization that offers facility and community-based long term care in Minnesota. Its Awakenings project is an initiative to reduce the use of antipsychotic drugs among nursing home residents who have dementia. It grew out of a pilot program in which Ecumen worked with physicians, employees, residents and their family members over the course of six months to eliminate the use of antipsychotic drugs, while substantially improving residents’ life quality. Awakenings is the subject of a December 4, 2010 Minneapolis Star Tribune article: Nursing Homes Are Seeking to End the Stupor. Information on the Awakenings project is available at: http://www.changingagingblog.org/posts/view/1343-reducing-antipsychotic-medications-in-nursing-homes-ecumen-awakenings-initiative/
St. Leonard Franciscan Living Community, Dayton, Ohio: St. Leonard reports cutting use of anti-anxiety drugs by 70% in less than a year using comforting and stimulating interventions that its founders call Behavior-Based Ergonomics Therapy (BBET). The facility reports that residents who suffer from dementia are safer and more satisfied, its staff is pleased, and the program is cost-effective. It was featured in March 2011 edition of Long-Term Living at: http://www.ltlmagazine.com/article/engaged-and-transformed
Vermont Gold Star Nursing Home Project: This project is training nursing home staff members to shift their focus from intervention to prevention by teaching them how to determine what distressed persons with dementia are communicating. Information is available at: http://susanwehrymd.com/About/goldstar/goldstar.html
Programs and Legal Actions
Antipsychotic Medication Use in Nursing Homes offers training geared to federal and state nursing home surveyors on dementia care and the misuse of antipsychotic medications but also has a great deal of information that would be helpful to anyone who cares for someone with dementia.
Dining with Friends is a 20-minute training video on a model dining program presented by the Alzheimer’s Resource Center of Connecticut. It gives thoughtful recommendations on how to make the dining experience in long term care facilities dignified, friendly, appetizing and nutritious for people with advanced dementia.
PEARL Specialized Dementia Care is a British caregiver training program focused on increasing patient well-being and reducing antipsychotic medication. The caregivers’ training includes a simulation to give them the experience of what it feels like to have dementia. The program has had excellent results.
Snoezelen Rooms are therapy rooms where patients can receive visual, tactile, and other sensory stimulation using lights, images, and objects to touch.
Massachusetts Department of Public Health: The State of Massachusetts launched a campaign in November 2010 to reduce the inappropriate use of antipsychotic medications for residents with dementia. A team of specialists are identifying nursing homes with successful methods for avoiding unnecessary use of antipsychotics and are planning trainings for nursing home staff on non-pharmacologic interventions. A November 18, 2010 story in the Boston Globe describes the campaign at: http://www.boston.com/news/health/articles/2010/11/18/ mass_aims_to_cut_drug_overuse_for_dementia/
U.S. Senate Special Committee on Aging: On November 30, 2011, the Aging Committee held a hearing titled: Overprescribed: The Human and Taxpayers’ Costs of Antipsychotics in Nursing Homes. Experts testified that antipsychotics are dangerous and expensive for “treating” dementia and are typically surpassed by simple nonpharmacologic options. Statements from presenters are posted on the Committee’s website at: http://aging.senate.gov/hearing_detail.cfm?id=335005
Antipsychotics Harm and Kill Elderly People with Dementia:
Title: The dementia antipsychotic withdrawal trial (DART-AD): long-term follow-up of a randomised placebo-controlled trial
First Listed Author: Ballard
Message: Increased risk of death for elderly people with dementia on antipsychotics continues over long-term. At three years, about one-third of patients on antipsychotics are alive while about two-thirds of those on a placebo are alive.
First Listed Author: Nerius, Michael
Message: Antipsychotics are associated with increased debilitation (more care needs and more death) for dementia patients.
First Listed Author: Cox, Claudia A.
Message: Psychotropic drugs are associated with a nearly 3-fold increase in falls for nursing home residents.
First Listed Author: Zheng-he Yu
Message: Antipsychotic use is significantly associated with heart attack risk.
First Listed Author: Maust
Message: Antipsychotics, Valproic Acid (Depakote), and Anti-Depressants are associated with increased risk of death in people with dementia. The absolute mortality risk of antipsychotics may be higher than previously reported and increases with dose.
First Listed Author: Weintraub
Message: Antipsychotics increase the risk of death by 2.35 times over an 180-day period for people with Parkinson’s Disease.
First Listed Author: Fraser
Message: Antipsychotics given to elderly people increase risk of falls and falls with fractures by 50% within 90 days of administration.
First Listed Author: Maust
Message: Mortality risks with antipsychotics are higher (at least double) than previously reported, particularly when patients are observed over longer periods of time. “The balance of benefit to risk of antipsychotic treatment in dementia continues to shift.”
Title: Psychotropic Medications, Including Short Acting Benzodiazepenes, Strongly Increase the Frequency of Falls in the Elderly
First Listed Author: van Strien
Message: Elderly people taking a psychotropic drug (antipsychotic, anti-anxiety, anti-depressant) were twice as likely to report having fallen three or more times in the past year.
First Listed Author: Hwang
Message: Atypical antipsychotics significantly raise risk of acute kidney injury, hypotension, acute urinary retention, and neuroleptic malignant syndrome for older adults.
Title: Antipsychotic Therapy and Short-term Serious Events in Older Adults with Dementia
First Listed Author: Rochon
Message: Older adults prescribed atypicals are 3.2 times more likely to suffer adverse events (i.e. hospitalization, fall, fracture, stroke, heart attack, death). Those prescribed conventional antipsychotics were 3.8 times more likely.
Title: Antipsychotic Agents and Sudden Cardiac Death – How Should We Manage the Risk?
First Listed Author: Schneeweis
Message: Antipsychotics have no measured benefit on treating elderly people with dementia but enhance risk of death. Use should be reduced sharply.
Title: Atypical Antipsychotic Drugs and the Risk of Sudden Cardiac Death
First Listed Author: Ray
Message: Current use of atypicals and conventional antipsychotics double the risk of sudden cardiac death.
Title: Risk of death associated with the use of Conventional versus Atypical Antipsychotic Drugs among Elderly Patients
First Listed Author: Schneeweis
Message: All antipsychotics raise the risk of death for elderly with dementia but conventionals are worse than atypicals.
Title: Risk of death in elderly users of conventional vs. atypical antipsychotic medications
First Listed Author: Wang
Message: All antipsychotics raise the risk of death for elderly with dementia but conventionals are worse than atypicals. Atypicals: nearly double risk of death (60-70% higher), Conventionals’ risk of death is 37% higher than atypicals’
Title: Antipsychotic Drugs and the Acute Respiratory Distress Syndrome
First Listed Author: Wilson
Message: Antipsychotics can cause neuroleptic malignant syndrome which may be associated with acute respiratory distress
Forget Dementia, Antipsychotics are Dangerous to Anyone Over 40
Title: Comparison of Longer-Term Safety and Effectiveness of 4 Atypical Antipsychotics in Patients Over Age 40: A Trial Using Equipoise-Stratified Randomization
First Listed Author: Jin
Message: Antipsychotics caused high incidence of metabolic syndrome and serious adverse and nonadverse events. Antipsychotics are dangerous and not a favorable treatment, irrespective of diagnosis or drug.
Antipsychotics Don’t Do Much Good and Less Intrusive Measures Are Better:
First Listed Author: Page
Message: Haldol proved no better than a placebo in managing delirium in an adult intensive care unit.
First Listed Author: Gitlin
Message: There is strong evidence for using nonpharmacologic treatment to yield high levels of patient and caregiver satisfaction and quality of life.
Title: Withdrawal Versus Continuation of Chronic Antipsychotic Drugs for Behavioural and Psychological Symptoms in Older People with Dementia
First Listed Author: Declercq
Message: There is very little difference in “behavioral deterioration” for patients with dementia who are withdrawn from antipsychotic drugs versus those who are not. People with dementia can be withdrawn from antipsychotics without detrimental effects on their behavior. Care providers should incorporate plans to discontinue antipsychotic drugs into routine clinical care.
First Listed Author: Husebo
Message: Agitation was significantly reduced for dementia patients who were administered regular acetaminophen. Results compared well to best currently available drug therapy. Pain management could reduce need for psychotropic drugs for treating dementia.
First Listed Author: Ballard
Message: Patients with Alzheimer’s Disease who were withdrawn from antipsychotics had no detrimental effect to their functional or cognitive status.
Title: Cost-benefit Analysis of Second-Generation Antipsychotics and Placebo in a Randomized Trial of the Treatment of Psychosis and Aggression in Alzheimer Disease
First Listed Author: Rosenheck
Message: Placebo led to cheaper total health costs and no noticeable difference in quality of life or measures of function than when antipsychotics were used.
Title: Effectiveness of Nonpharmacological Interventions for the Management of Neuropsychiatric Symptoms in Patients with Dementia
First Listed Author: Ayalon
Message: Non-drug interventions can be more effective than drugs and should be used first. Pain, fatigue, and other issues may be the cause of behavioral problems.
First Listed Author: Schneider
Message: Any benefits of atypicals for treating psychosis, aggression, or agitation in patients with Alzheimer’s are offset by adverse effects. Patients treated with drugs had more parkinsonism, sedation, confusion, and cognitive disturbances.
First Listed Author: Vigen
Message: People with dementia who are given antipsychotics show significantly greater rates of decline in cognitive function than those who received a placebo.
Title: Effect of Enhanced Psychosocial Care on Antipsychotic Use in Nursing Home Residents with Severe Dementia
First Listed Author: Fossey
Message: Facilities that dedicated themselves to non-medication alternatives reduced their drug usage by half with no significant differences in the levels of agitation or disruptive behavior in the residents.
Title: Pharmacological Treatment of Neuropsychiatric Symptoms of Dementia
First Listed Author: Sink
Message: Psychiatric drugs are not particularly effective for the management of neuropsychiatric symptoms of dementia. The drugs should be used only as a last resort if at all and only after environmental causes of symptoms have been first ruled out.
Other Classes of Psychotropic Drugs Are Deadly for Elderly People in Nursing Homes; In Fact, More Deadly than Atypical Antipsychotics:
First Listed Author: Huybrechts
Message: After looking at 10,900 nursing home residents over a 10 year period, conventional antipsychotics, antidepressants, and anti-anxiety drugs were associated with greater risk of death than even atypical antipsychotics.
First Listed Author: Weich
Message: People taking anti-anxiety or sleeping drugs in the first year died at a rate more than three times greater than those who didn’t. Over 7.6 years, the death rate of those taking the drugs was twice as high of those who didn’t. The death rate of the studied people taking the drugs was 26.46 out of 100. For those who didn’t take the drugs, the death rate was 16.82 out of 100.
Anti-Anxiety Drugs Associated with Increased Risk of Dementia:
First Listed Author: Yaffe
Message: Use of anti-anxiety drugs such as Xanax, Ativan, Klonoppin, and Valium are associated with significantly increased risk of Alzheimer’s Disease.
First Listed Author: Billioti de Gage
Message: Long-term use (over 90 doses – even if spread out over years) of benzodiazapenes correlated with much higher incidence of Alzheimer’s Disease. 180-plus doses nearly doubles the risk of Alzheimer’s.
Anti-Depressants Are Ineffective and Dangerous for Treating Depression in Dementia:
First Listed Author: Yu-Jung Wei
Message: Antidepressant users with dementia who live in nursing homes experienced significantly higher risk for falls and fractures than even antipsychotic users.
First Listed Author: Sterke
Message: Use of SSRI anti-depressants are associated with significant increases in fall risks for nursing home residents with dementia. The higher the dose, the greater the risk.
Title: Sertraline [Zoloft] or Mirtazapine [Remeron] for Depression in Dementia (HTA-SADD): a Randomised, Multicentre, Double-blind Placebo-controlled Trial
First Listed Author: Banerjee
Message: Anti-depressants are no better than a placebo than treating depression in people with dementia. Due to the increased risk of adverse events associated with the use of anti-depressants, they should not be used as a first-line of treatment of depression in dementia.
Depression is Significantly Over-Diagnosed:
First Listed Author: Mojtabai
Message: More than 60% of people diagnoses with depression do not meet the clinical criteria for depression. Depression is overtreated (with antipdepressants).
Facilities Drug Use Rates are Driven by Staff Convenience and Facility Culture, Not Residents’ Needs:
Title: Variation in Nursing Home Antipsychotic Prescribing Rates
First Listed Author: Rochon
Message: Large variation in rate of drugging in nursing homes cannot be explained by variation in residents. Some nursing homes must be better than others.
Title: Exploring the Link Between Organizational Climate and the Use of Psychotropic Medicines in Nursing Homes: A Qualitative Study
First Listed Author: Sawan
Message: A facility’s organizational climate heavily influences its psychotropic drug usage, with staffing levels and training, managerial expectations, and teamwork the three most influential dimensions.
Title: Unexplained Variation Across US Nursing Homes in Antipsychotic Prescribing Rates
First Listed Author: Chen
Message: Facility level prescribing rates depend on the facility, not the resident. Facility preferences determine its drugging rate. 16.4% of residents with no clinical indication for antipsychotics nonetheless received them.
Drugs Are Often Given Without Clinical Indications:
Title: Increasing Off-label Use of Antipsychotic Medications in the United States, 1995-2008
First Listed Author: Alexander
Message: Use of antipsychotic drugs has risen dramatically from 6.2 million “treatment visits” in 1995 to 14.3 million in 2008. Use among the elderly increased 23% during that time. Off-label use more than doubled from 4.4 million treatment visits to 9.0 million and the costs of off-label drugs increased 7.5-fold from $0.8 billion to $6.0 billion.
Title: The Quality of Antipsychotic Drug Prescribing in Nursing Homes
First Listed Author: Briesacher
Message: Use of antipsychotics has risen. Most atypicals prescribed outside of prescribing guidelines for doses and indications. Only 41.8% has appropriate dosage and indications for use. 23.4% no indications for use, 17.2% too high doses, 17.6% had both problems. Those on antipsychotics had no appreciable difference in quality of life.
Title: Provision of Psychopharmacological Services in Nursing Homes
First Listed Author: Molinari
Message: 70% of all Medicaid residents receive a psychoactive within three months of admission even though most have no psychiatric diagnosis nor any prior use.
Title: Use of Antipsychotics among Nonagenarian Residents in Long-term Institutional Care in Finland
First Listed Author: Alanen
Message: Residents with socially disruptive behaviors are mush more likely to receive an antipsychotic than those with good social skills
Title: Broadened Use of Atypical Antipsychotics: Safety, Effectiveness, and Policy Challenges
First Listed Author: Crystal
Message: Most use for residents is without an FDA diagnosis. 22.6% of residents with dementia but no psychosis and no behavioral symptoms receive an antipsychotic. Physicians responding to pressure that “something needs to be done.”
Title: Off-Label Use of Second-Generation Antipsychotic Agents Among Elderly Nursing Home Residents
First Listed Author: Kamble
Message: 23.5% of the country’s nursing home residents in 2004 received at least one prescription for a second-generation antipsychotic drug and that 86.3% of the use was off-label. Only 56.9% of the off-label use was evidence-based; 43% of off-label use “was without strong scientific support, suggesting a less than optimal quality of care in nursing homes.” The off-label use could be due in part to pharmaceutical promotion, growing scientific support, and prescribers’ training and personal experience.” Residents with a diagnosis of dementia were 3.2 times more likely to receive off-label drugs; 71% of residents taking off-label drugs had a diagnosis of dementia.
Informing Patients of Drug Risks Leads to Decreased Use:
Title: Trends in Antipsychotic Use in Dementia 1999-2007
First Listed Author: Kales
Message: Use of atypical antipsychotic for outpatient treatment of dementia began to decline in 2003 when FDA Black Box warnings were required. Nursing home patients were not part of the study.
Title: Impact of FDA Black Box Advisory on Antipsychotic Medication Use
First Listed Author: Dorsey
Message: FDA Black Box warning label on atypical antipsychotics was associated with decreased use, especially among elderly patients. Informing patients of drug risks could reduce misuse of antipsychotic drugs.
Some nursing homes must be better than others.
First Listed Author: Borson
Message: New federal laws targeting nursing home quality of care, including psychotropic drug use, decreased use of antipsychotic drug use by almost 35% from 1989-1992. Focused reform efforts can reduce use.
Education Programs Will Reduce Psychotropic Drug Rates:
First Listed Author: Avorn
Message: Educational outreach program to nursing homes designed to increase the selectivity of psychoactive drug use was associated with significant reduction of use. Resident cognition also improved in the educated nursing homes.
First Listed Author: Ray
Message: One-time personal visits by trained physician counselors to doctors who were frequent prescribers of antipsychotic drugs in nursing homes did not reduce antipsychotic drug prescriptions. The authors concluded that nursing staff (not physicians) may be key to therapeutic decisions and that more intensive interventions than a single educational visit is needed to change prescribing habits.
Increased Regulatory Scrutiny Lowers Antipsychotic Use:
Title: Response to Regulatory Stringency: The Case of Antipsychotic Medication Use in Nursing Homes
First Listed Author: Bowblis
Message: A ten-percentage point increase in the proportion of facilities that receive a deficiency for unnecessary drug use decreases the proportion of residents who receive an antipsychotic by 0.45 percent.
Finding Alternatives to Antipsychotics