Selecting Delivery Characteristics
Thus far we have discussed how theory/conceptual frameworks frame an intervention, inform the targets of an intervention (e.g., cognition, behavior, social and/or physical environments) and provide an understanding as to why an intervention should work. However, theory can do even more at the development phases—it can help guide selection of delivery characteristics or the approach to delivering the intervention.
The specific approach to intervening or delivering an intervention may assume various forms depending upon the theoretical lens that is applied, practical considerations, and the empirical evidence as to what constitutes effective approaches. Chapter 5 examines delivery characteristics in depth. However, here our focus is on specifically the role of theory in informing the selection of delivery characteristics.
In our first example discussed earlier of a caregiver intervention to address burden through cognitive reframing, different delivery strategies could be employed on the basis of the theoretical lens that is adopted. For instance, adult learning theories emphasize situational-based and practice-oriented learning techniques. This could involve face-to-face sessions and learning through doing, which would be in contrast to a didactic and/or prescriptive approach. Alternatively, behavior change theories emphasize the role of peer-based and group-learning situations, suggesting the value of imparting new coping strategies through group meetings and exercises and peer-led programs.
The delivery characteristics of the REACH II intervention were shaped by several principles from adult-learning theories. These included: activities need to occur within the context in which the education and new skills would be applied or actually used; repeated exposure to new information and skills is needed for their integration into daily care routines; and education and skills are best offered and subsequently adopted when perceived as needed. Thus, the intervention was subsequently delivered in the home, activities were adjusted to areas of most concern to caregivers, and education was reinforced through the use of a telephone computer system (Belle et al., 2006). This illustrates the link of theory, models, and principles to the design of treatment components and delivery characteristics.
To illustrate these points further, we use, as an example, an intervention that is designed to reduce behavioral symptoms in persons with dementia through a nonpharmacologic approach. Behavioral symptoms, such as repetitive vocalizations, agitation, aggressiveness, wandering, rejection of care, and restlessness, are almost universal in dementia and can be troublesome to persons with dementia and their caregivers. Pharmacological approaches do not address the most troublesome behaviors, and their risks, including mortality, may cause more harm than the benefit derived (Gitlin, Kales, & Lyketsos, 2012).
Nonpharmacologic approaches conceptualize behavioral symptoms as, in large part, expressions of unmet needs (e.g., repetitive vocalizations for auditory stimulation); inadvertently reinforced behavior in the face of an environmental trigger (e.g., the patient learns that screaming attracts increased attention); and/or consequences of a mismatch between the environment and the patient’s ability to process and act upon cues, expectations, and demands (Algase et al., 1996; Cohen- Mansfield, 2001). These approaches involve modifying cognitions, behaviors, environments, or precipitating events that may contribute to disturbances, or involve using compensatory strategies to reduce for persons with dementia their increased vulnerability to their environment (Kales, Gitlin, & Lyketsos, 2015). More specifically, one conceptual model, the Progressively Lowered Stress Threshold (PLST), proposes that, with disease progression, individuals with dementia experience increasing vulnerability and a lower threshold to stress and external stimuli (Hall & Buckwalter, 1987). One source of stress for persons with dementia is the complexity of routine activities of living and interactions with caregivers (formal and informal), which become increasingly challenging as the day progresses (Hall & Buckwalter, 1987). PLST suggests that, by minimizing environmental demands that exceed the functional capacity of an individual and by regulating activity and stimulation levels throughout the day, agitation can be reduced. Complementing this framework is the Competence-Environmental Press Model (CEPM; Lawton & Nahemow, 1973), which suggests that there are optimal combinations of environmental circumstances or conditions and personal competencies that result in the highest possible functioning for individuals. Obtaining the just-right-fit between an individual’s capabilities and external demands of environments/activities results in adaptive, positive behaviors; alternately, environments/activities that are too demanding or understimulating may result in behavioral symptoms such as agitation or passivity in individuals with dementia. Similar to PLST, the CEPM suggests that environments/activities can be modified to fit any level of cognitive functioning and individual competencies in order to optimize quality of life. Both frameworks suggest that behaviors can be reduced or managed by modifying contributing factors that place too much demand or press on the individual with dementia. Such factors may include the physical environment (e.g., auditory and visual distractions), the social environment (e.g., communication style of informal/formal caregivers), or factors that are modifiable but which are internal to the individual themselves (e.g., discomfort, pain, fatigue).
Thus, to recapitulate, frameworks such as the Unmet Needs Model, the Progressively Lower Stress Threshold Process Model, or CEPM inform why nonpharmacologic approaches may effectively prevent, minimize, or manage troublesome behavioral symptoms. The stress process models described earlier in this chapter inform how minimizing an objective stressor such as behavioral symptoms may lower caregiver burden. So we now have a strong theoretical basis for a nonpharmacologic intervention and how it may impact both persons with dementia and family caregivers.
However, use of nonpharmacologic strategies for persons at the moderate to severe stage of dementia is totally dependent upon the willingness and ability of family caregivers to effectively implement them. Families may be so overwhelmed by the care situation that they are unable to use nonpharmacologic strategies although their use may be of potential help to them. Some caregivers may be more “ready” than others to learn about and enact strategies that require behavioral change on their part (e.g., employing different communication strategies or rearranging the physical environment), and their readiness may affect participation in and the benefits derived from the intervention for the person with dementia. Now we need a theory or conceptual framework to understand how to effectively engage families in the intervention process.
To this end, we can draw upon the Transtheoretical Model (TTM) (Prochaska, DiClemente, & Norcross, 1992). TTM has been widely used in behavior change interventions including smoking cessation, exercise, and other healthy lifestyle programs. The model suggests that to change and adopt new behaviors is complex and involves five incremental stages. These include precontemplation in which individuals do not consider changing their behavior, nor are they aware of the consequences of their behavior. Applied to caregivers, those at this stage may view behavioral symptoms of dementia as intentional and be unaware how their communications contribute to these symptoms. In contemplation, individuals are aware a problem exists and may begin to consider how to address the problem. At this stage, caregivers may understand behavioral symptoms as a disease consequence but not recognize the consequences of their own behaviors. The preparation stage is characterized by intention to take action and a positive orientation to behavior change; caregivers at this stage are ready to develop an action plan such as seeking information or learning about nonpharmacologic strategies. When behavior is consistently modified, individuals are considered to be in the action stage such as a caregiver who actively uses effective communication strategies. Maintenance occurs when the desired behavioral change is sustained for 6 months or more (Prochaska et al., 1992).
TTM can help inform effective approaches for intervening with families as illustrated in Figure 4.4. Families with an initially low level of readiness may require more education about dementia and behavioral symptoms than those at a high level of readiness. Similarly, those at a low level of readiness may need more time in the intervention. The interventionist may need to proceed slowly so as to not overwhelm the caregivers and to move them to a higher level of readiness in which they are willing and able to implement effective nonpharmacologic strategies. Thus, in this case example, the construct of readiness based in TTM can help inform how to tailor and deliver information and the pace of the intervention (Gitlin & Rose, 2014).