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