The authors have disclosed no potential conflicts of interest, financial or otherwise. This project was supported by a Commonwealth Foundation Small Grant (#20130170), awarded to Ann Kolanowski and Kimberly Van Haitsma. The investigators also acknowledge generous support from the John A. Hartford Foundation.
More than 5 million Americans are living with Alzheimer’s disease (AD); in 2012, the direct costs of their care totaled $200 billion, including $140 billion in costs to Medicare and Medicaid (Alzheimer’s Association, 2012). Although these figures are staggering, just as compelling is the burden of care to family and formal caregivers: 90% of individuals with dementia will hit, scream, become verbally abusive, or resist care at some point in the disease trajectory (Lyketsos et al., 2001). These behavioral and psychological symptoms of dementia (BPSD) can be difficult to respond to and are associated with risk for institutionalization, more rapid functional decline, and physical abuse (Dyer, Pavlik, Murphy, & Hyman, 2000; Tractenberg, Weiner, Patterson, Gamst, & Thal, 2002). To address these challenges, the authors (A.K., K.V.H.) pulled together a team of clinicians and researchers with expertise in this area and gathered the resources and approaches to disseminate the best evidence to date on how to optimally work with older individuals with these types of symptoms. The following provides some background about the issues and an overview of the website and resources.
The major approach to care for BPSD has been a pharmacological one, most notably the use of a class of drugs known as antipsychotic agents. Research has demonstrated that not only do these drugs have limited effectiveness in reducing BPSD (Schneider et al., 2006), they also carry a significant risk for death (Schneider, Dagerman, & Insel, 2005), particularly in older adults with cognitive impairments such as AD. As a result, several consensus groups have published strong recommendations supporting the use of nonpharmacological approaches as the first line of treatment for these behaviors (American Geriatrics Society and American Association for Geriatric Psychiatry, 2003).
In group residential living environments (assisted living/nursing homes), antipsychotic drugs continue to be routinely prescribed despite U.S. Food and Drug Administration warnings to the contrary. In March 2012, the Centers for Medicare and Medicaid Services (CMS) launched the Initiative to Improve Behavioral Health and Reduce the Use of Antipsychotic Medications in Nursing Homes. This national action plan is using a multidimensional approach to reduce antipsychotic drug use in nursing homes ( http://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/NursingHomeQuality-Inits/Spotlight.html).
But, reducing antipsychotic drug use is only one part of the equation. It was obvious that a vast void in care would be evident if drug reduction is not supplemented by alternative approaches to BPSD. For nursing home staff working in these settings, there was a need to ensure they had ready access to current evidence-based assessment tools, educational programs, and nonpharmacological interventions that would help prevent and manage BPSD (Kolanowski, Fick, Fraser, & Penrod, 2010). With funding from the Commonwealth Foundation and the John A. Hartford Foundation, the principal investigators (A.K., K.V.H.) began a year-long project that addressed this critical need. Specifically, the goal of the project was to pool the available resources for staff working in facilities so that these resources would be available in a single location and organized and developed in a way that could be easily disseminated and implemented in real-world settings. To achieve this goal, a national, interdisciplinary group of geriatric experts was convened. The experts were then further divided into focus areas including philosophy, education and leadership, assessment, intervention, system integration, and dissemination. The groups worked independently to expound their sections, and materials were then collated and developed into a user-friendly format that is now available online (http://www.nursinghometoolkit.com). To further guide the development of the Toolkit, the investigators engaged the community of end-users in the process. Focus groups with direct care staff were conducted to capture their views regarding the types of information they find useful in responding to BPSD and the most effective way of delivering the information. Their suggestions were incorporated into the Toolkit.
The Toolkit, which is accessible at no cost, is a compendium of peer-reviewed/expert-endorsed existing resources that may be used by staff to implement nonpharmacological approaches for BPSD. The Toolkit includes staff educational and leadership development programs, methods for assessing BPSD, nonpharmacological approaches for BPSD, system-wide methods for integrating these approaches into the culture of care, and a section on how to respond to emergent behaviors.
The Toolkit is extremely user friendly, with tabs on the top that allow one to pick and choose the aspects of the toolkit of interest. There is an overview for how to utilize the different components of the toolkit. For example, there is a blueprint for organizational strategies that has tools for self-assessment, educational materials, policy development, and things to consider related to long-term adherence.
The education and leadership section provides an array of educational materials for interventions including videos, pocket cards, slides, e-learning programs, and resources from the Portal of Geriatric Online Education. Programs for leadership are also provided within this section.
The assessment section pulls together a systematic review of measures of behaviors that are common in dementia patients. Lastly, the Toolkit provides a review of the nonpharmacological approaches for treating behaviors and psychiatric symptoms commonly noted in residents with dementia. There is also a library of additional resources for staff to use to help with implementation of behavioral interventions.
Aside from the work delineating how to implement a philosophy of care in which nonpharmacological interventions are seen as the primary treatment approach, there is a section that provides information and management ideas for specific behaviors. Included within this section is extensive information about management of apathy, agitation, inappropriate or disruptive vocalizations, aggressive behavior, wandering, repetitive behaviors, resistance to care, and sexually inappropriate behaviors.
We strongly encourage readers to visit the website and use these materials to promote behavioral health among their residents. We recognize that there may be times in which drug therapy is appropriate with these individuals. That being said, we believe behavioral interventions should be used as the first approach and these interventions should continue even if medications are needed to best manage and optimize quality of life of residents.
Barbara Resnick, PhD, CRNP, FAAN,
Sonya Ziporkin Gershowitz Chair in
Professor of Nursing
University of Maryland School of Nursing
Ann M. Kolanowski, PhD, RN, FGSA, FAAN
Elouise Ross Eberly Professor in the College
Hartford Center of Geriatric Nursing
Excellence at The Pennsylvania State
Professor of Psychiatry
College of Medicine at Penn State—Hershey
Adjunct Professor, Associated Faculty
School of Nursing
University of Pennsylvania
University Park, Pennsylvania
Kimberly Van Haitsma, PhD
Polisher Research Institute
North Wales, Pennsylvania
The Gerontologist: Practice Concepts
College of Nursing
College of Health and Human Development
The Pennsylvania State University
University Park, Pennsylvania
School of Nursing
University of Pennsylvania
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- Dyer, C.B., Pavlik, V.N., Murphy, K.P. & Hyman, D.J. (2000). The high prevalence of depression and dementia in elder abuse or neglect. Journal of the American Geriatrics Society, 48, 205–208.
- Kolanowski, A., Fick, D., Fraser, C. & Penrod, J. (2010). It’s about time: Use of nonpharmacological interventions in the nursing home. Journal of Nursing Scholarship, 42, 214–222. doi:10.1111/j.1547-5069.2010.01338.x [CrossRef]
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- Schneider, L.S., Tariot, P.N., Dagerman, K.S., Davis, S.M., Hsiao, J.K., Ismail, M.S. & Lieberman, J.A. (2006). Effectiveness of atypical antipsychotic drugs in patients with Alzheimer’s disease. New England Journal of Medicine, 355, 1525–1538. doi:10.1056/NEJMoa061240 [CrossRef]
- Tractenberg, R.E., Weiner, M.F., Patterson, M.B., Gamst, A. & Thal, L.J. (2002). Emergent psychopathology in Alzheimer’s disease patients over 12 months associated with functional, not cognitive, changes. Journal of Geriatric Psychiatry and Neurology, 15, 110–117. doi:10.1177/089198870201500210 [CrossRef]
This editorial will also appear in the January/February 2014 issue of Geriatric Nursing.