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Innovative community based social and behavioral interventions for individuals suffering from Alzheimer’s disease and their family caregivers have increased substantially in creativity and recognition over the years. However, the commitment to the scientific design and evaluations of these programs has not followed suit. The goal of this paper is to explicate the benefits of a systematic approach to the design and evaluation of intervention programs with the challenges of the Alzheimer’s dyad in mind. Because of the unique nature of the disease, Alzheimer’s programs must flexibly apply existing intervention and evaluation techniques to program designs which accommodate the degenerative course of the disease and the unique strain experienced by family caregivers. Using existing literature as a vehicle to illustrate how successful and unsuccessful programs have addressed these goals, the paper stresses the need for design and evaluations which apply creative and robust treatments, but do not compromise scientific rigor.
We have shaped this paper with three overriding considerations in mind. First, rather than reviewing comprehensively the existing literature, we have chosen, instead, to use examples from this literature as a vehicle to address the important conceptual and methodological issues related to Alzheimer’s interventions. Included are examples both from successful and unsuccessful programs. The successful programs provide a foundation upon which new interventions can be planned and evaluated, while the unsuccessful programs often reveal equally useful information about hazards and obstacles to the development of successful programs. Examples are drawn mainly from the USA, but we have cited studies from other countries, where possible.
Second, we believe that it is critical that interventions evaluate the anticipated outcomes for both the caregiver and the person with Alzheimer’s disease. While most programs are targeted for one member of the dyad, both are impacted. Failure to examine the possible ramifications of the program on both members of the dyad and, indeed, on the larger social context, can lead to unanticipated outcomes as well as impeding the realization of benefits.
Third, the goals, design and evaluation of interventions for people with dementia and their caregivers need to reflect the special characteristics of this disorder. We know that successful intervention involves more than taking established programs developed with other chronically ill groups and applying them without modification to this population. In the same way, evaluation strategies need to focus on the specific considerations relevant to this population. Of foremost concern is that Alzheimer’s disease is a degenerative disorder. Social and behavioral programs will not arrest the progression of the disease, but rather, can address the social ramifications and consequences of it. In some instances, the optimal outcome is that the social condition of the dyad does not deteriorate as fast as it might without intervention. Even the best interventions lessen the impact of the disease, but do not eliminate the problem. These types of treatment outcomes are more subtle and difficult to demonstrate than for more traditional interventions with people whose underlying biomedical condition is stable. That is not to say that interventions with the Alzheimer’s dyad are not valuable but rather, that the goals and expectations of interventions have to be adapted to the unique demands of the disease.
Another consideration in design and evaluation of behavioral and social interventions is that the methodologies developed in clinical drug trials may be inappropriate or impossible to implement. Although researchers often consider randomized trials to be the gold standard for research design, that approach can, under some circumstances, pose more threats to internal and external validity than alternative designs. The potential limitations in randomized trials do not relieve researchers of the obligation to choose designs that maintain scientific rigor, but rather indicate they must consider the advantages and disadvantages of various designs for maintaining internal and external validity.
Goals for the care recipient
One of the unique features of dementia is the limited agency of the person with the disease. Except in the early stages of the illness, the person with dementia cannot participate actively in treatment. That means that family caregivers play a greater role in implementing treatment. In the Teri et al. (1997) study, caregivers implemented a behavioral treatment of depression for the person with dementia (increasing pleasant activities). In the established version of that therapy, depressed persons themselves undertake increasing pleasant activities. This limited agency of people with dementia makes it all the more necessary to consider the ramifications of an intervention for both members of the dyad.
Goals for interventions with the person with dementia depend on the severity of the disease. Early in the disease process, it may be possible to involve people actively in addressing current problems such as depression or in planning for their future (e.g., Feinberg & Whitlatch, 1999; Yale, 1999; Zarit & Zarit, 1998a). Later on, goals of treatment must reflect the best interests of people with the disease. There has, to date, been little discussion of what this “best interest”
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