S. 3604, the Improving Dementia Care Treatment for Older Adults Act

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1 John Weir, President Sarah F. Wells, Executive Director Ph: Fax: October 25, 2012 Senator Herb Kohl 330 Hart Senate Office Building Washington, DC Senator Chuck Grassley 135 Hart Senate Office Building Washington, DC Senator Richard Blumenthal 702 Hart Senate Office Building Washington, DC, RE: S. 3604, the Improving Dementia Care Treatment for Older Adults Act Dear Senators Kohl, Grassley and Blumenthal: The National Consumer Voice for Quality Long-Term Care (Consumer Voice) and the undersigned organizations are writing in support of S. 3604, the Improving Dementia Care Treatment for Older Adults Act of By requiring informed consent for antipsychotic use in nursing homes and implementing a multi-faceted approach to address the issue of misuse of antipsychotic medications, this legislation takes an important step toward improved dementia care. Given the complexity of this problem, we are aware that there is no one silver bullet; S recognizes that reality by focusing on prescribers, hospitals, and other settings, as well as nursing homes and at no cost to taxpayers. The Consumer Voice, a national non-profit organization that advocates for quality care and services for long-term care consumers in any setting, has made ending the improper and dangerous use of antipsychotics a top policy priority.

2 We are pleased that S would require nursing homes to inform residents with dementia, or a health care agent/surrogate if applicable, about the possible side effects and risks associated with antipsychotics as well as alternative treatment options. We hear frequently from families of nursing home residents that they were never told their loved one was going to be given an antipsychotic medication and the first they knew of it was when they found the resident oversedated and unresponsive. Other family members report that they would have never agreed to let an antipsychotic be given to their loved one if they had known what it would do to them. Informed consent would better ensure that residents or their representatives receive the information they need to decide whether or not an antipsychotic medication should be given. In addition, S would require monthly reports indicating the instances in which antipsychotics are prescribed for nursing home residents with dementia for a use not approved by the Food and Drug Administration. Such reports would help nursing homes better track their antipsychotic utilization rate and target problems more quickly. While nearly 40% of individuals with dementia living in nursing homes receive antipsychotic drugs, we know that the overprescribing of antipsychotics is not limited to nursing homes. The Institute of Medicine study called for in S would provide valuable data about antipsychotic utilization in hospitals, during transitions of care, and in other health settings. This information would tell us more about the extent and nature of the problem and provide a foundation for improving dementia care not only in nursing homes, but in other care settings as well. We also support the prescriber education programs that S would create. To change the way in which we care for individuals with dementia in nursing homes and other settings, we must change prescribing practices. For years ombudsmen, families and other advocates have noted incidents where the first and only response when a resident exhibits behavioral symptoms is for a nurse to call the doctor and ask for and receive a medication to deal with the problem. Far too frequently, antipsychotics are prescribed for behaviors without any attempt to determine and address what is causing the behavior. Over time, prescriber education could reduce the unnecessary use of these drugs in persons with behavioral and psychological symptoms related to dementia (BPSD). The programs established by S would have the added advantage of being funded on an ongoing basis using a portion of the monies stemming from False Claims Act suits involving off-label use of antipsychotics.

3 The Consumer Voice and the organizations listed below thank you for introducing S and stand ready to assist you in obtaining passage of this important legislation. Sincerely, Sarah Wells Executive Director Robyn Grant Director, Public Policy and Advocacy On Behalf Of: National Organizations: American Medical Student Association Center for Medicare Advocacy Direct Care Alliance National Association of Local Long-Term Care Ombudsmen National Association of Social Workers National Association of State Long-Term Care Ombudsman Programs National Association of States United for Aging and Disabilities National Consumer Voice for Quality Long-Term Care National Council on Aging National Research Center for Women and Families National Senior Citizens Law Center OWL - The Voice of Midlife and Older Women PHI Quality Care through Quality Jobs Services and Advocacy for GLBT Elders Service Employees International Union State and Local Organizations: Alabama Alabama Office of the State Long-Term Care Ombudsman Alaska Alaska Office of the State Long-Term Care Ombudsman Arizona Area Agency on Aging; Region One, Incorporated.

4 Arkansas Arkansas Advocates for Nursing Home Residents California Advocacy, Incorporated California Advocates for Nursing Home Reform California Long-Term Care Ombudsman Association California Office of the State Long-Term Care Ombudsman Catholic Charities; Long-Term Care Ombudsman Program, Stanislaus County Foundation Aiding the Elderly Napa Long-Term Care Ombudsman Program Ombudsman Services of Northern California Ombudsman Services of San Luis Obispo County PASSAGES: Long-Term Care Ombudsman Program Colorado Colorado Office of the State Long-Term Care Ombudsman Denver Regional Council of Governments Connecticut Connecticut Office of the State Long-Term Care Ombudsman Statewide Coalition of Presidents of Resident Councils Delaware Advocates for Geriatric Empowerment Delaware Office of the State Long-Term Care Ombudsman Florida Center for Dementia Education Florida Office of the State Long-Term Care Ombudsman Georgia Georgia Office of the State Long-Term Care Ombudsman Guam Guam Long-Term Care Ombudsman Services Program Illinois Illinois Office of the State Long-Term Care Ombudsman Levin & Perconti Shawnee Alliance Long-Term Care Ombudsman Program Indiana Indiana Office of the State Long-Term Care Ombudsman Kansas Kansas Advocates for Better Care

5 Kentucky Kentucky Advocate Association Kentuckians for Nursing Home Reform Nursing Home Ombudsman Agency of the Bluegrass, Incorporated Maine Maine Office of the State Long-Term Care Ombudsman Maryland Maryland Office of the State Long-Term Care Ombudsman Montgomery County Long-Term Care Ombudsman Program Massachusetts Massachusetts Advocates for Nursing Home Reform Michigan Kalamazoo County Advocates for Senior Issues Michigan Office of the State Long-Term Care Ombudsman Minnesota Minnesota Office of the State Long-Term Care Ombudsman Missouri Mid-America Regional Council Nevada Nevada Office of the State Long-Term Care Ombudsman New Hampshire New Hampshire Office of the State Long-Term Care Ombudsman New Mexico New Mexico Office of the State Long-Term Care Ombudsman New York Cold Spring Hills Family Council Long Term Care Community Coalition Long-Term Care Ombudsman Program of Suffolk County North Carolina Centralina Area Agency on Aging, Long-Term Care Ombudsman Program Our Mother s Voice North Dakota North Dakota Office of the State Long-Term Care Ombudsman

6 Ohio Long-Term Care Ombudsman Program, PSA2 Ohio Office of the State Long-Term Care Ombudsman Pennsylvania Bucks County Long-Term Care Ombudsman Program Pennsylvania Office of the State Long-Term Care Ombudsman South Carolina Our Mother s Voice South Carolina Office of the State Long-Term Care Ombudsman Tennessee Metropolitan Inter-Faith Association, Long-Term Care Ombudsman Program Tennessee Office of the State Long-Term Care Ombudsman Texas Nursing Home Victims Coalition, Incorporated Texas Office of the State Long-Term Care Ombudsman Utah Utah Office of the State Long-Term Care Ombudsman Virginia Birmingham Green Family Council Community Partnership for Improved Long-Term Care; an Initiative of the Legal Aid Justice Center Virginia Office of the State Long-Term Care Ombudsman Virginia Poverty Law Center Washington Snohomish County Long-Term Care Ombudsman Program Washington Office of the State Long-Term Care Ombudsman Additional Signatures as of November 8 th, 2012: National Organizations: National Committee to Preserve Social Security and Medicare Wider Opportunities for Women State and Local Organizations: California Bet Tzedek Legal Services Ombudsman Program for Lake and Mendocino Counties District of Columbia District of Columbia Office of the Long-Term Care Ombudsman

7 Illinois East Central Illinois Area Agency on Aging Iowa Iowa State and Local Long-Term Care Ombudsmen Michigan Michigan Campaign for Quality Care Michigan Poverty Law Program Missouri Missouri Office of the State Long-Term Care Ombudsman NorthEast Independent Living Services Nebraska Nebraska Office of the State Long-Term Care Ombudsman New York GRIOT Circle, Incorporated New York City Long-Term Care Ombudsman Program North Carolina North Carolina Office of the State-Long-Term Care Ombudsman Ohio Long Term Care Ombudsman Program, PSA6 Long Term Care Ombudsman Program, Region 10A Long-Term Care Ombudsman Program, Region 3 South Carolina Catherine Hunt Foundation Vermont Community of Vermont Elders (COVE) Washington Clallam/Jefferson Counties Long-Term Care Ombudsman Program Kitsap County Long-Term Care Ombudsman Program Resident Councils of Washington The National Consumer Voice for Quality Long-Term Care (formerly NCCNHR) is a 501(c)(3) nonprofit membership organization founded in 1975 by Elma L. Holder that advocates for quality care and quality of life for consumers in all long-term-care settings Connecticut Avenue, NW Suite 425 Washington, DC 20036