Misuse of Antipsychotic Medications: An Information and Advocacy Toolkit

Misuse of Antipsychotic Medications: An Information and Advocacy Toolkit

The Misuse of Antipsychotics amongst Nursing Home Residents: A Status Update Background: •

According to a report from the Department of Health and Human Services (HHS) Office of the Inspector General, twenty-six percent of all nursing home residents receive antipsychotic medications.

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The HHS Office of Inspector General found that 88 percent of these residents are elderly people with dementia. According to the Food and Drug Administration (FDA), elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death.

Furthermore, antipsychotic drugs are not approved for the treatment of dementia-related psychosis.

•

Medicare and Medicaid prohibit physically or chemically restraining residents for staff convenience, but the government alleged that major pharmaceutical companies and the largest long-term care pharmacy illegally marketed antipsychotics to treat symptoms of dementia. HHS Inspector General Daniel Levinson said ―government, taxpayers, nursing home residents, as well as their families and caregivers should be outraged—and should seek solutions to the misuse of antipsychotic drugs as restraints.

Federal Action: •

The FDA has required the manufacturers of conventional antipsychotic drugs to add a Boxed Warning and Warning to the drugs’ prescribing information about the risk of mortality in elderly patients treated for dementia-related psychosis.

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October 2011, the Centers for Medicare and Medicaid Services (CMS) announced that it was considering regulations that would require nursing homes to hire independent pharmacists to assess residents’ prescriptions. The regulations would have required pharmacist consultants in nursing homes to be free of conflicts of interest 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. o

In April 2012, CMS decided NOT to publish these rules. Among the reasons given are that addressing this issue would not solve the entire problem (others such as facility staff

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and doctors, are also part of the problem), and it would disrupt the long-term care industry. o

In May 2012, CMS launched the “Partnership to Improve Dementia Care Initiative,” which will seek to reduce the misuse of atypical antipsychotics among nursing home residents by 15% by the end of 2012. As part of this initiative, data on each nursing home's antipsychotic use has been made available on Nursing Home Compare. The initiative also emphasizes nonpharmacological alternatives to antipsychotics for nursing home residents. These include consistent staff assignments, increased exercise or time outdoors, monitoring and managing acute and chronic pain, and planning individualized activities.

•

In May 2012, Senators Kohl, Grassley and Blumenthal introduced an amendment to S. 3187, the Food and Drug Administration Safety and Innovation Act, which would have required informed consent to administer antipsychotic drugs to elderly patients with dementia. Despite the tremendous outreach efforts of advocates across the country and the commendable leadership of Senators Grassley (R-Iowa), Blumenthal (D- Conn.) and Kohl (D-Wis.), the amendment was unable to achieve the unanimous consent required for consideration, failing by merely one vote.

National Consumer Voice for Quality Long-Term Care Action: •

Consumer Voice has remained vocal on the issue of the misuse of antipsychotics in long-term care facilities. The organization has issued a statement to the Senate Aging Committee in November of 2011, orchestrated a sign-on letter to CMS on the issue in December of 2011 and has met with CMS both in 2011 and 2012 where the antipsychotic issue has been discussed.

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In recommendations to CMS on how to improve the requirements of participation for long-term care facilities in Medicare and Medicaid, Consumer Voice recommended adopting more stringent regulations concerning the use of antipsychotics amongst nursing home residents. Consumer Voice will continue to be a leader in advocating for ending the misuse of atypical antipsychotics in long-term care facilities.

The Misuse of Antipsychotics in Long-­‐term Care Facilities

THE ISSUE: Residents of long-­‐term care facilities are increasingly being placed on antipsychotic medications despite having no proper diagnosis to warrant their use. Antipsychotics are especially dangerous when prescribed to elderly individuals and have been linked to numerous resident deaths in nursing homes and other long-­‐term care facilities. Furthermore, the misuse and overprescribing of antipsychotics in long-­‐term care facilities is extremely costly for the Medicare program and for consumers, as these medications tend to be high-­‐priced.

WHY IS THIS A PROBLEM? Although Medicare and Medicaid prohibit physically or chemically restraining residents for staff convenience, antipsychotics continue to be used amongst residents with dementia, Alzheimer’s and other forms of cognitive disorders as a means of behavior control.

• According to the Department of Health and Human Services (HHS), 26% of nursing home residents receive antipsychotic medications, 88% of whom are elderly people with dementia.

• Antipsychotic drugs, when prescribed for elderly persons with dementia, can have serious medical complications, including: death, loss of independence, over-­‐sedation, confusion, and falls.

• 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.

Here’s what can happen when antipsychotics are misused: •

Situation #1 Peggy's husband Jim was admitted into a nursing home after his Parkinson’s disease and dystonia had advanced to where Peggy did not feel as if she could care for him adequately on her own. Upon entering the nursing home, Jim was able to walk and speak with relative ease; however Jim was not happy about being placed in a nursing home and became increasingly irritable and uncooperative with staff.

Peggy visited her husband frequently and noticed over time that his mobility and speech were rapidly declining, and her husband had trouble staying awake during her visits. Peggy spoke with Jim’s nurses and discovered that he was being administered an antipsychotic medicine three times a day. Jim’s condition continued to deteriorate and he was eventually moved to the Alzheimer’s unit of the nursing home.

Situation #2 Countless times every day, Mrs. Janelle Price walked across the hall into Mrs. Jonas’ room without knocking. Mrs. Price had a dementing illness and could no longer talk. She became very anxious when staff or Mrs. Jonas directed her out of the room. She sat in the chair in front of the window and refused to move. Mrs. Jonas grew exasperated and staff asked the doctor for an antipsychotic. After being placed on the antipsychotic, Mrs. Price stayed in her room as she began to sleep through meals and most of the day, and found it increasingly difficult to sit upright.

WHAT ARE THE ALTERNATIVES? Identifying and determining the cause of behavioral symptoms (anger, agitation, swearing, continuous wandering, etc.).

Labeling people as “problem behaviors” only masks the problem.

• Developing an individualized care plan to address these symptoms.

• Good care practices – such as consistent staff assignments, adequate numbers of staff, staff training in how to care for people without physical or chemical restraints, increased exercise or time outdoors, monitoring and managing acute and chronic pain, and planning individualized activities – have been emphasized by the Center for Medicare and Medicaid Services (CMS) as nonpharmacological treatments and therapies for residents with dementia and other cognitive disorders.

• Staff training in how to care for people without physical or chemical restraints.

Here’s what can happen when alternatives are tried: •

Situation #1 Peggy's husband Jim was admitted into a nursing home after his Parkinson’s disease and dystonia had reached an advanced enough stage to where Peggy did not feel as if she could care for him adequately on her own. Upon entering the nursing home, Jim was able to walk and speak with relative ease; however Jim was not happy about being placed in a nursing home and became increasingly irritable and uncooperative with staff.

Peggy noticed these changes in Jim’s behaviors and scheduled a care conference with facility staff, Jim’s neurologist, Jim and herself. In the care conference, Jim was able to tell staff how he wanted his day and room to be organized. He told staff that he could not hear in large groups. It was easier for him to talk to one person at a time. Also, the neurologist was able to comment on behavioral symptoms that may stem from Jim’s Parkinson’s disease.

As a result of the care conference, staff introduced Jim to another man with whom he had many common interests and experiences. They chose to eat lunch together at a small table set apart from the others. This arrangement reduced the extra noise, making it easier for Jim to hear. This plan prevented isolation and the depressive or paranoid response.

Situation #2 Countless times every day, Mrs. Janelle Price walked across the hall into Mrs. Jonas’ room without knocking. Mrs. Price had a dementing illness and could no longer talk. She became very anxious when staff or Mrs. Jonas directed her out of the room. She sat in the chair in front of the window and refused to move. Mrs. Jonas grew exasperated and staff considered talking with Mrs. Price’s doctor about prescribing an antipsychotic. First, however, they stopped and asked themselves, “Who is this person?” and “What is she trying to tell us?”

Nursing staff then realized that they didn’t know much about Mrs. Price’s life before she entered the nursing home. Upon consulting with Mrs. Price’s family, they learned that she was an avid gardener and was noted in her community for her flowers. Her unmet need was to have some connection to a garden. Staff then realized that the window in Mrs. Jonas’ room looked out on a flower garden, while in contrast, Mrs. Price’s window overlooked the parking lot.

While Mrs. Price’s room couldn’t be changed immediately, in a few month’s time she was able to relocate to the garden side of the nursing home. In the meantime, staff directed Mrs. Price to another window in the day room, overlooking a garden.

They set her favorite chair in front of the window, and she spent much of the day contentedly looking at the garden. In addition, staff walked with Mrs. Price in the garden daily. The key to this problem was knowing the details of Mrs. Price’s earlier life – her love of gardening.

To view facility and state specific data on antipsychotic usage, visit http://www.medicare.gov/nhcompare.

To read more about this issue, visit http://www.theconsumervoice.org/advocate/antipsychotic-­‐drugs

PROMISING PRACTICES TO REDUCE THE USE ANTIPSYCHOTIC MEDICATIONS

Oftentimes, residents in long-­‐term care facilities need to communicate unmet needs, but have lost the ability to do so due to dementia, aphasia or other cognitive issues so they may become agitated, combative, or have experience a dramatic change in behavior. Rather than prescribing unnecessary medications to change the residents’ “behavior,” caregivers must identify and address the underlying issue the resident is trying to communicate. The following chart highlights some of the primary mental, physical and psychosocial issues that should be considered as potential underlying causes of significant changes in resident behavior and some techniques to meet those needs. Many providers have successfully reduced the use of unnecessary medications (including antipsychotics) using some of these alternatives. The purpose of this document is to provide a brief introduction and overview of potential needs residents with cognitive issues may try to communicate and ways to meet their needs, but this is not a comprehensive list. We encourage you to share successful alternatives, best practices and resources with us so we can continue to expand our educational materials.

PAIN Residents with cognitive impairments may not be able to tell caregivers when they are in pain. If a resident has a change in behavior caregivers must evaluate to see if the resident is in pain. There are pain assessment tools, such as PAINAD (Pain Assessment in Advanced Dementia) that will assist caregivers in recognizing behaviors typical of residents with dementia that may not normally be associated with pain. PAINAD has the following pain indicators (ADvancing Care, March/April 2012, www.alznyc.org/LTC) :

• • • • •

Breathing: periods of hyperventilation, noisy, labored breathing Negative vocalization: crying, loud moaning or groaning, wails or laments Facial expression: very distressed look on face, may squeeze eyes shut Body language: the person holds themselves rigidly, or pulls or pushes, hits, kicks or grabs others Consolability: the person is visibly upset, and cannot be soothed or comforted

Resources/Best Practices

ADvancing Care. Alzheimer’s Association New York City Chapter. March/April 2012. http://www.alznyc.org/nyc/advancingcare/marapr2012.asp

Efficacy of treating pain to reduce behavioural disturbances in residents of nursing homes with dementia: cluster randomised clinical trial. Bettina S Husebo, Clive Ballard, Reidun Sandvik, Odd Bjarte Nilsen, Dag Aarsland. 2011. http://www.bmj.com/highwire/filestream/386556/field_highwire_article_pdf/0?sid=249d83a1-­‐9de2-­‐4bf3-­‐b500-­‐ 20df1bec4495

PERSON-­‐CENTERED CARE (Individualized care) Person-­‐centered care means providing individualized care based on the resident’s needs, preferences and routine.

Personalizing care for residents with cognitive impairments enhances the quality of care and life of the resident and may prevent changes in behavior and the use of psychotropic medications. Comfort care or palliative care is one example of person-­‐centered care and “focuses on relieving pain and other distressing symptoms including agitation, anxiety, poor appetite, loneliness, and boredom” (Encouraging Comfort Care Guide-­‐ see below).

Resources/Best Practices

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Bathing Without a Battle: Person-­‐Directed Care of Individuals with Dementia, Second Edition. Ann Louise Barrick, PhD, Joanne Rader, RN, MN, PMHNP, Beverly Hoeffer, DNSc, RN, FAAN, Philip D. Sloane, MD, MPH, Stacey Biddle, COTA/L. 2008. http://www.springerpub.com/product/9780826101242#.UD_VAVaeLwk

Beatitudes Campus, Arizona: Vermillion Cliffs, the memory support unit of this community, was featured in the December 31, 2010 New York Times article, Giving Alzheimer’s Patients Their Way, Even Chocolate.

Article: http://online.santarosa.edu/homepage/mvercoutere/ALZ.pdf Beatitudes Dementia Training Program: http://www.beatitudescampus.org/aging-­‐research-­‐and-­‐training/palliative-­‐care-­‐ for-­‐advanced-­‐dementia-­‐program/ Encouraging Comfort Care: A Guide for Families of People with Dementia Living in Care Facilities http://www.alzheimers-­‐illinois.org/pti/comfort_care_guide.asp

Ecumen, Minnesota: Ecumen’s Awakenings program was featured in a December 4, 2010 article in the Minneapolis Star Tribune, Nursing Homes Are Seeking to End the Stupor.

Article: http://www.startribune.com/lifestyle/111326224.html?refer=y Awakenings program: http://www.changingagingblog.org/posts/view/1343-­‐reducing-­‐antipsychotic-­‐medications-­‐in-­‐ nursing-­‐homes-­‐ecumen-­‐awakenings-­‐initiative/

Finding alternatives to potent sedatives: Nursing homes increasingly take new tack in dealing with dementia. Kay Lazar. 2012. http://www.boston.com/lifestyle/health/articles/2012/04/30/finding_alternatives_to_potent_sedatives/

SENSORY STIMULATION In seeking the underlying cause for a significant change in behavior caregivers should consider whether the resident has enough sensory stimulation or if a resident will respond positively to alternative treatments prior to administering medications. Resources for a few types of therapies are below:

Animal-­‐Assisted Therapy How Animal Therapy Helps Dementia Patients: http://www.everydayhealth.com/alzheimers/how-­‐animal-­‐therapy-­‐helps-­‐ dementia-­‐patients.aspx

Dance/Movement Therapy American Dance Therapy Association: http://www.adta.org/resources/Documents/Info-­‐Sheet-­‐DMT-­‐Alzheimer-­‐s-­‐with-­‐ Resource-­‐Bib.pdf Chicago Bridge: http://www.thechicagobridge.org/dancing-­‐through-­‐dementia-­‐benefits-­‐of-­‐dancemovement-­‐therapy/

Music Therapy Alzheimer’s Association: http://www.alznyc.org/nyc/advocatecare/julyaugust2012.asp Alive Inside (documentary): http://www.ximotionmedia.com/

Sensory Stimulation Sensory Stimulation in Dementia Care: http://www.sld.cu/galerias/pdf/sitios/rehabilitacion-­‐adulto/sensory_stimulation_in_dementia_care.pdf Christian Care Centers (Texas)-­‐ Snoezelen room for sensory stimulation: http://www.wfaa.com/news/health/Garland-­‐ facility-­‐uses-­‐Snoezelen-­‐rooms-­‐to-­‐relax-­‐Alzeimers-­‐dementia-­‐patients-­‐118682054.html St. Leonard Franciscan Living Community (Ohio)-­‐ Facility uses Behavior-­‐Based Ergonomics Therapy (BBET) program: http://www.ltlmagazine.com/article/engaged-­‐and-­‐transformed

Touch Therapy The effect of therapeutic touch on behavioral symptoms of persons with dementia. http://www.ncbi.nlm.nih.gov/pubmed/15712768

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THE INTERPRETIVE GUIDELINES A TOOL FOR ADVOCACY

When Congress passed the Nursing Home Reform Act in 1987, it issued a clear set of standards that nursing homes had to meet in order to receive federal funding under Medicare and Medicaid. Regulations were written based on the requirements of the law and a State Operations Manual was developed issuing the protocols for overseeing implementation of the regulations and to provide guidance to surveyors of long-­‐term care facilities on interpreting the requirements. This guidance, found in Appendix PP – Guidance to Surveyors of Long-­‐Term Care Facilities1, often called the Interpretive Guidelines, can be an important tool for advocates promoting quality in long-­‐term care facilities.

WHAT’S IN THE INTERPRETIVE GUIDELINES?

The Interpretive Guidelines are arranged in order of the nursing home regulation to which they pertain. The information contained in the Guidelines for each section of the regulation may include some or all of the following elements:

• The FTag number 2 • The regulatory language • The intent of the requirement • Interpretive guidelines • Procedures • Probes – which could be questions to ask or things to look for during a survey • Definitions • An overview of the issue covered in the regulation • Examples • Investigative protocol • Determinations and criteria for compliance • Potential tags for additional investigation • Deficiency categorization • Endnotes and resources

The following is an excerpt from the guidelines explaining the “intent” of the regulations regarding unnecessary drugs (F329):

INTENT: §483.25(l) Unnecessary drugs The intent of this requirement is that each resident’s entire drug/medication regimen be managed and monitored to achieve the following goals:

1 www.cms.gov/Regulations-­‐and-­‐

Guidance/Guidance/Manuals/downloads/som107ap_pp_guidelines_ltcf.pdf 2 FTags are data tags used to identify specific regulations in the On-­‐line Survey, Certification and

Reporting (OSCAR) data system

•

The medication regimen helps promote or maintain the resident’s highest practicable mental, physical, and psychosocial well-­‐being, as identified by the resident and/or representative(s) in collaboration with the attending physician and facility staff;

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Each resident receives only those medications, in doses and for the duration clinically indicated to treat the resident’s assessed condition(s);

•

Non-­‐pharmacological interventions (such as behavioral interventions) are considered and used when indicated, instead of, or in addition to, medication;

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Clinically significant adverse consequences are minimized; and

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The potential contribution of the medication regimen to an unanticipated decline or newly emerging or worsening symptom is recognized and evaluated, and the regimen is modified when appropriate.

WHAT CAN I LEARN FROM THE INTERPRETIVE GUIDELINES?

By becoming familiar with the information contained in the Interpretive Guidelines, consumers and advocates become armed with the knowledge of what the regulation means and how it is interpreted by the government agencies responsible for enforcing it. It also provides insight on what surveyors look for when determining whether a facility is in compliance with a particular regulation.

Oftentimes the guidance will include examples or notes about what surveyors should be looking for or questions they should be asking of facilities and staff during their investigations.

Nursing homes and their staff should also be familiar with the information contained in the Guidelines so as to understand what the expectations are in meeting the elements of regulatory compliance.

WHAT CAN I DO WITH THE INFORMATION?

The information contained in the Interpretive Guidelines, particularly those sections that have been most recently updated by the Centers for Medicare and Medicaid Services (CMS), inform not only surveyors, but also consumers, advocates, providers, and staff about what it means to be in compliance.

As a consumer or advocate, if you have questions about a particular area of care, the Interpretive Guidelines can help you know what questions to ask and what information to seek. In many cases, it can also provide resources that can be shared with facilities regarding how to enhance and improve care and services for residents. In other cases, you could use the Guidelines to open a conversation with surveyors if you notice a trend of unsubstantiated complaints or have concerns about a recent survey.

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Information About Inappropriate Drug Use for Long-Term Care Consumers What’s the Problem?

Used appropriately, medications can cure disease, ease pain and enhance quality of life. Used inappropriately, drugs can cause disability, pain and decrease quality of life. Psychoactive drugs affect the brain and influence thinking, feeling and reacting. These drugs pose special risks for older people and increase the risk of death in persons with dementia. Psychoactive drugs used to treat behavioral symptoms in place of good care are called chemical restraints.

What Should Happen?

Caregivers should first work to treat underlying problems – relieving pain, personalizing care, connecting with the individual. Caregivers need to assess (or evaluate) both the individual and the environment. The assessment is used to understand the resident’s physical, mental, emotional and social well-being and address behavioral symptoms if they do occur. Agitation, confusion or other behavioral changes can be caused by untreated infections, dehydration, pain, medication reactions, boredom, loneliness or other physical or psychosocial reasons. Ask the doctor to evaluate possible medical causes of any behavioral concerns.

Behaviors are a form of communication. Behavioral Symptoms are warning signs telling us something is wrong.

For more information go to: www.theconsumervoice.org, National Center on Elder Abuse, www.ncea.aoa.gov

When Should I Be Concerned?

The individual is exhibiting behavioral symptoms such as: anger, agitation, screaming, swearing, hitting, pacing, paranoia, delusions, continuous wandering or any other significant change in behavior.

Alternately, if the individual has been showing behavioral symptoms and is suddenly subdued, lethargic, has decreased appetite, insomnia or other, ask what’s changed.

A growing number of caregivers are proving that a better way of caring for individuals with dementia focuses on comfort, timely assessment and response to the underlying causes of any behavioral symptoms.

What Can I DO?  Ask for a care plan conference and ask why each drug was ordered, the potential side effects of each drug and possible drug interactions  Make sure the right questions are asked – use why, when, where and how questions to consider as many reasons for the behavior as possible  Keep the focus on the resident’s needs  Monitor the care plan – if it’s not being followed, speak up immediately  Know your rights under the law  Work closely with staff to help them get to know the resident  If drugs are being considered for behavioral symptoms, ask that other approaches be tried first  Speak with the doctor if s/he wants to order a psychoactive drug.

Ask about the risks.  Contact your long-term care ombudsman – search for your local program at: www.ltcombudsman.org

What Are My Rights?

Federal and state nursing home laws prohibit the use of chemical restraints and unnecessary drugs, and require that nursing homes provide:  Quality care so individuals attain or maintain their highest functional level  Enhance individuals’ quality of life by supporting their right to dignity, respect and consideration  Honor freedom of choice in care and treatment decisions, including being able to provide informed consent for, or refuse, any proposed treatment  Provide individualized care based on a thorough evaluation and care plan  Prompt response to complaints

Misuse of Antipsychotic Medications Sample Letter to the Editor <Name of Media Outlet or Publication> <Attention: > <Address 1> < Address 2> <City>, <State> <Zip or Postal Code> Dear Editor, I’m writing to draw attention to a growing problem in the United States: the misuse of antipsychotic medications in nursing homes. Antipsychotic medications are often prescribed to control or limit certain “behaviors” in residents with dementia that may be considered problematic, instead of properly assessing the needs of the resident or reasons for the behaviors and then addressing them through proper care.

The median use for antipsychotics in U.S. nursing homes for residents without psychosis or related conditions is 16.7%. Antipsychotic drugs, when prescribed for elderly persons with dementia, can have serious medical complications including death, the loss of independence, over-sedation, confusion and falls. The Food and Drug Administration has issued “Black Box” warnings that antipsychotics greatly increase the risk of death in persons with dementia.

The federal government is recognizing this dangerous problem and taking action. In May the Centers for Medicare and Medicaid Services (CMS) in the Cabinet for Health and Human Services announced that it will try to get states to reduce the misuse of antipsychotics by 15% by the end of this year. In addition to the government’s efforts, we need to ensure that nursing homes are hiring enough staff to adequately care for residents, that proper assessment and care planning is done for each resident, and that staff is engaging in person-centered care practices and employing other than chemical restraints. Moreover, families need to know about the dangers of these medications when misused and how to plan for prevention.

If you think your loved one might be the victim of the misuse of antipsychotic medications, question what types of medication they’re on and why. If the problem persists, contact your local ombudsman. You can find your local ombudsman program by going to www.ltcombudsman.org. In addition, refer to www.theconsumervoice.org or http://www.ncea.aoa.gov for more information and resources.

Sincerely, <Writer’s Signature> <Name of Writer> <Writer’s Title> <Writer’s Organization >

** NOTE: All letters to the editor must include a signature, address, and phone number so the paper may contact you with any questions. You should also include your affiliation with an organization if applicable. Your phone number and address will not be printed.

RESOURCES: USE OF ANTIPSYCHOTICS IN LONG-­‐TERM CARE FACILITIES

The misuse of antipsychotics among long-­‐term care residents is a growing concern and has captured the attention of government agencies, organizations, advocates, policy makers and researchers. This resource list highlights some of the organizations, initiatives, advocacy and research supporting the reduction of inappropriate use of antipsychotics in long-­‐term care facilities (especially for residents with dementia).

INITIATIVES Advancing Excellence in America’s Nursing Homes http://www.nhqualitycampaign.org/star_index.aspx?controls=dementiaCare The Advancing Excellence in America’s Nursing Homes Campaign is a major initiative of the Advancing Excellence in Long Term Care Collaborative. The Collaborative assists all stakeholders of long term care supports and services to achieve the highest practicable level of physical, mental, and psychosocial well-­‐being for all individuals receiving long term care services. One of 2012 campaign goals addresses the appropriate use of medications: http://www.nhqualitycampaign.org/files/NewGoals_030612.pdf

CMS (Centers for Medicare & Medicaid Services) Partnership to Improve Dementia Care Initiative May 30, 2012 Press Release

ORGANIZATIONS The National Consumer Voice for Quality Long-­‐Term Care http://ww.theconsumervoice.org/advocate/antipsychotic-­‐drugs http://www.theconsumervoice.org/advocate/culturechange http://www.theconsumervoice.org/advocate/factsheets

The National Long-­‐Term Care Ombudsman Resource Center (NORC) http://www.ltcombudsman.org/issues/dementia-­‐care http://www.ltcombudsman.org/issues/culture-­‐change http://www.ltcombudsman.org/ombudsman-­‐support/training

Alzheimer’s Association www.alz.org State Alzheimer’s Disease Plans: Quality of Care http://www.alz.org/documents_custom/state_plan/quality%20of%20care.pdf Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes http://www.alz.org/national/documents/brochure_dcprphases1n2.pdf

Alzheimer’s Society http://www.alzheimers.org.uk/antipsychotics

American Health Care Association (AHCA): The Quality Initiative (AHCA/NCAL) One of the four goals for The Quality Initiative is Safely Reducing the Off-­‐Label Use of Antipsychotics by 15 percent

by December 2012 is one of the four goals. http://www.ahcancal.org/QUALITY_IMPROVEMENT/QUALITYINITIATIVE/Pages/default.aspx 1 09/12

American Medical Directors Association (AMDA) http://www.amda.com/advocacy/brucbs.cfm

American Society of Consultant Pharmacists https://www.ascp.com/articles/antipsychotic-­‐medication-­‐use-­‐nursing-­‐facility-­‐residents

California Advocates for Nursing Home Reform (CANHR) http://www.canhr.org/stop-­‐drugging

LeadingAge http://www.leadingage.org/Newsletter.aspx?id=4694&pv=t

Pioneer Network www.pioneernetwork.net http://www.pioneernetwork.net/Upcoming/Detail.aspx?id=286

The Dementia Action Alliance http://www.dementiaaction.org.uk/

The Eden Alternative http://www.edenalt.org/how-­‐we-­‐serve/reduce-­‐the-­‐use-­‐of-­‐antipsychotic-­‐medications-­‐in-­‐people-­‐living-­‐in-­‐long-­‐term-­‐ care-­‐settings

REGULATIONS CMS State Operations Manual, Appendix PP -­‐ Guidance to Surveyors for Long Term Care Facilities §483.25(l) Unnecessary Drugs Interpretive Guidelines (revised 2006) http://www.cms.gov/Regulations-­‐and-­‐Guidance/Guidance/Manuals/downloads/som107ap_pp_guidelines_ltcf.pdf

NH Regulations Plus http://www.hpm.umn.edu/nhregsplus/ Quality of Care (under unnecessary drugs): http://www.hpm.umn.edu/nhregsplus/NH%20Regs%20by%20Topic/Topic%20Quality%20of%20Care.html Resident Behavior and Facility Practices (under chemical restraints): http://www.hpm.umn.edu/nhregsplus/NH%20Regs%20by%20Topic/Topic%20REsident%20Behavior%20and%20Faci lity%20Practices.html

RESEARCH/REPORTS A Randomised, Blinded, Placebo-­‐Controlled Trial in Dementia Patients Continuing or Stopping Neuroleptics (The DART-­‐AD Trial). Clive Ballard, Marisa Margallo Lana, Megan Theodoulou, Simon Douglas, Rupert McShane, Robin Jacoby,Katja Kossakowski, Ly-­‐Mee Yu, Edmund Juszczak. (2008) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2276521/pdf/pmed.0050076.pdf

A Systematic Evidence Review of Non-­‐pharmacological Interventions for Behavioral Symptoms of Dementia Washington (DC): Department of Veterans Affairs; March 2011. http://www.ncbi.nlm.nih.gov/books/NBK54971

Dementia Beyond Drugs: Changing the Culture of Care. G. Allen Power. http://www.healthpropress.com/store/power-­‐29562/index.htm

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Medicare Atypical Antipsychotic Drug Claims for Elderly Nursing Home Residents U.S. Department of Health and Human Services, Office of the Inspector General (2011) http://oig.hhs.gov/oei/reports/oei-­‐07-­‐08-­‐00150.asp

Nursing Facility Assessments and Care Plans for Residents Receiving Atypical Antipsychotic Drugs U.S. Department of Health and Human Services, Office of the Inspector General (2012) http://oig.hhs.gov/oei/reports/oei-­‐07-­‐08-­‐00151.asp

Reducing antipsychotic drug prescribing for nursing home patients: a controlled trial of the effect of an educational visit. W A Ray, D G Blazer 2nd, W Schaffner, and C F Federspiel. (1982) http://ajph.aphapublications.org/doi/abs/10.2105/AJPH.77.11.1448

TRAINING/IN-­‐SERVICES Antipsychotic Drugs in Dementia: A Best Practice Guide. Deborah Sturdy, Hazel Heath, Professor Clive Ballard, Professor Alistair Burns. http://nursingstandard.rcnpublishing.co.uk/supplements/booklets-­‐and-­‐guides/antipsychotic-­‐drugs-­‐in-­‐dementia-­‐a-­‐ best-­‐practice-­‐guide/

Caring for a Person with Alzheimer’s Disease. National Institute on Aging. http://www.nia.nih.gov/alzheimers/publication

CMS Surveyor Training: Initiative to Improve Behavioral Health and Reduce the Use of Antipsychotic Medications in Nursing Homes Residents (March 29, 2012) http://surveyortraining.cms.hhs.gov/pubs/VideoInformation.aspx?cid=1098

Developing Meaningful Connections with People with Dementia: A Training Manual. Beth Spencer, Anne Robinson, Chris Curtin. Michigan Dementia Coalition. http://www.dementiacoalition.org/professionals/pdfs/Train-­‐the-­‐Trainer-­‐ Dementia-­‐Care-­‐Manual.pdf

Improving Dementia Care-­‐ Reducing Unnecessary Antipsychotic Medications (ppt): Cheryl Phillips, M.D., AGSF, Senior VP Public Policy and Advocacy, LeadingAge http://www.slideshare.net/AAHSA/reducing-­‐antipsychotic-­‐drug-­‐use-­‐for-­‐dementia

Ombudsman Advocacy and Culture Change: Achieving Resident-­‐Directed Care in Daily Advocacy. http://www.ltcombudsman.org/ombudsman-­‐support/training/conference-­‐calls/ombudsman-­‐advocacy-­‐and-­‐culture-­‐ change

Optimising treatment and care for behavioural and psychological symptoms of dementia: A best practice guide.

The Dementia Action Alliance. http://www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=609

Reducing the use of antipsychotic drugs: A guide to the treatment and care of behavioural and psychological symptoms of dementia. http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1133

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