This section of the Toolkit contains a literature review on non-pharmacological approaches (NPA) most effective in reducing the behavioral and psychological symptoms (BPSD) of dementia exhibited by persons residing in nursing homes. NPA are the first-line therapy for responding to BPSD due to the high risks and limited effectiveness of antipsychotic medications for treating these symptoms. As a result, there is an urgent need to equip nursing home providers with readily accessible tools for identifying and implementing NPA.
After presenting information that will help staff understand BPSD, practical guidance for providers, lessons learned from the field (i.e., direct care staff focus group findings), and descriptions of clinical decision support approaches are provided.
Realizing the challenges nursing home providers encounter when faced with the realities of responding to BPSD in a resource-challenged environment, experts are increasingly calling attention to the need to address both the feasibility and efficacy of NPA in nursing home settings. Among the common resource challenges faced by nursing home providers are limited access to staff with advanced training in dementia care, limited resources and high rates of turnover. The goal of this guide is to assist nursing home providers in identifying the optimal evidence-feasibility fit for their residents and facility. Feasibility was defined here using Seitz and colleagues' guidelines1: high-feasibility approaches require fewer resources, lower-cost supplies, less complex activities, minimal staff training, and less need for additional personnel and less specialized personnel.
To help providers overcome some of these challenges, two tables are provided: Table 1 presents a succinct review of the evidence for different NPA; Table 2 offers practical guidance for providers, integrating both the efficacy and feasibility of different NPA. While the evidence in support of NPA may seem weak when assessed using criteria that conform to the elements of randomized clinical trials, many of these criteria (blinding and random assignment, for example) are not possible in studies that test the efficacy of NPA given the nature of these interventions. The evidence in Table 1 should be interpreted in light of the limitations of available systematic reviews of NPA, where the selection of studies for inclusion may be very small and the criteria for assessment more appropriate for pharmaceutical trials.
'Dementia behaviors' are referred to and thought of in many different ways, which can be confusing to providers and family members caring for persons living with dementia. Behavioral and Psychological Symptoms of Dementia (BPSD) refer to non-cognitive symptoms that occur commonly among persons with dementia.2 These behaviors have been referred to as problematic, disturbing, difficult, inappropriate and challenging. Such language actually reflects the perspective of the observer rather than that of the person living with dementia. BPSD are now widely viewed as a form of communication that is meaningful (rather than a problem) and is an individual's best attempt to communicate any variety of unmet needs. In recent years, providers and researchers have shifted away from using this negative terminology and have adopted more person-centered terminology, such as 'behavioral symptoms' and 'responsive behaviors' to recognize the experience of the person with dementia exhibiting the behaviors. Throughout the guide we will refer to these behaviorals as Behavioral and Psychological Symptoms of Dementia (BPSD), realizing other terminology exists.
The etiology (or underlying cause) of BPSD is multi-factorial. Behaviors may result from any combination of: neurodegenerative damage associated with the disease itself; unmet physical needs such as pain or discomfort; and unmet psychosocial needs, such as the need for meaningful human contact or fear. BPSD also commonly co-occur or occur in "clusters."3
Some important things to know about BPSD:
In addition to being effective, NPA should also be feasible. Nursing homes have multiple barriers to implementing practice change.7 To assist nursing home providers in choosing which NPA to implement, Table 2 lists specific NPA identified during a review of extant evidence and includes those approaches that demonstrated both efficacy and feasibility. An approach was considered to be more feasible if it required fewer resources, lower-cost supplies, less complex activities, minimal staff training, and less need for additional or specialized personnel. In most nursing home settings, feasibility is centrally important for the sustainability of a given approach.
Regardless of the specific NPA selected for use in addressing the resident's BPSD and distress, several considerations should be kept in mind.
All of us have good days and bad days. Fluctuations in mood and behavior are a normal part of human functioning. For persons living with dementia, these fluctuations can be even more exaggerated. In our focus groups direct care providers eloquently expressed their awareness of these fluctuations in acknowledging that sometimes it is really hard to pinpoint what may "set someone off" on any given day. If you follow all the guidance and direction provided by this toolkit, you may still be stymied on what is causing a given resident's distress in a specific moment in time. There is no magic bullet.
There is no magic bullet. Selecting a given approach to trial with a given resident with BPSD is only the beginning of the process. Though this toolkit has delineated the best and most feasible evidence based approaches for you, keep in mind that any given approach follows the "one-third" rule. A given approach may work for about a third of persons immediately; while with another third it will be only moderately successful, and the final third will not respond at all. To make things even more complex, as the direct care providers noted in our discussions, an approach that works today, may not work tomorrow, or, even an hour from now. Furthermore, some approaches that are effective when implemented by one direct caregiver may not work when implemented by another. These realities have several implications:
Many research reviews have stressed that the more individualized or tailored an approach is, the more likely it will be that it will succeed. Direct care providers describe the process of getting to know an individual's preferences as the secret to success in preventing or ameliorating the distress of BPSD. They also articulate feeling hampered by knowing very little about an individual new to a facility. The flow of information from family member to direct care staff is often not a linear process, hampering the direct care workers ability to provide person centered care.
Interdisciplinary teams are the optimal venue for selecting a particular approach for a given resident. Too often these teams do not include the direct care worker. While logistical difficulties abound in facilitating participation by direct care workers, interdisciplinary teams ignore this critical team member to their peril. The direct care workers we talked with believed that the team was missing critical information by excluding them. They also believed that the care plan did not adequately reflect approaches that were useful to them in their daily care activities. Reflecting the centrality of including the direct care giver in the care planning team meetings, Advancing Excellence included this metric in their Person-Centered Care Quality indicator.10
In addition to knowing the individual preferences of each resident, direct care staff requested information on how to initially respond to acute episodes of behaviors such as hitting, spitting, or screaming. Specifically, they requested information on "what to say" and "how to react" in the moment. For this reason a section was added on individual behaviors that lists approaches for initial responses that help de-escalate the behavior (see Specific Behaviors in the Toolkit). Staff also indicated that the best method for staff education is live demonstration or videos that depict successful approaches vs. unsuccessful approaches. They did not feel that written information or the internet were viable options for continuing education. The Education and Leadership section of the Toolkit highlights in red those educational programs that include demonstrations and videos on how to respond to acute episodes of behavior.
Several different types of non-pharmacologic approaches are reflective of theoretical frameworks about the predisposing/precipitating factors and meaning of behaviors. Among these are: sensory stimulation, environmental modification, behavioral therapy, cognitive/emotion-oriented approaches ,social contact (real or simulated), caregiver training/development (see Education and Leadership Development section of the Toolkit), structured activities, clinically-oriented approaches, individualized/person-centered care, and clinical decision support approaches. Findings from systematic reviews that have evaluated the evidence for these approaches are inconsistent, due in part to reviews having different criteria for inclusion of studies. A summary of the evidence for specific non-pharmacological approaches is presented in Table 1. In addition to systematic reviews, articles related to clinical-decision support were retrieved separately. Across systematic reviews the following points were highlighted:
Recently, approaches have been developed and tested that provide staff with clinical decision support algorithms to facilitate appropriate assessment and approach in response to BPSD in an individualized manner. Two approaches tested in randomized trials include the Serial Trial Intervention26,27 and Treatment Routes for Exploring Agitation (TREA).21Both are briefly described here. Both can be supplemented by guidance provided in the Assessment document and the Specific Behaviors document. A third clinical decision tool is the Describe, Investigate, Create and Evaluate (DICE) model developed by Kales, Gitlin and Lyketsos.28
Serial Trial Intervention. The Serial Trial Intervention is a 9-step decision support tool for long-term care staff to follow with the goals of improving comfort and reducing agitation in persons with advanced dementia (see also Assessment document). The care provider moves from step 1 to step 9 based on whether or not each approach results in decreased agitation:
Treatment Routes for Exploring Agitation (TREA). TREA is a systematic methodology for individualizing various non-pharmacologic approaches to decrease agitation in older persons with dementia. The premise of TREA is that agitation has different etiologies at different times and as such requires different treatment based on the individual's needs, past identify/roles, preferences and abilities. TREA guides staff in identifying unmet needs underlying agitation through formal and informal data collection including: gathering information from staff and family caregivers and observations of the individual experiencing agitation focusing on behavior and environment. Using this information staff suggest personalized approaches based on systematic algorithms. TREA has demonstrated reductions in physical nonaggressive and verbal agitation as well as increases in pleasure and interest among persons with dementia (see also Assessment document)
Describe, Investigate, Create and Evaluate (DICE). DICE is a model that starts with a description of the behavior followed by an investigation of possible causes, the formulation of a tailored treatment plan using non-pharmacological approaches and ongoing evaluation of outcomes. Greater detail on all steps is provided in the publication.
