Introduction: The NINR and NIA have made provision of health care to older adults with chronic illnesses a priority funding issue. Older adults, especially those over the age of 85, are the fastest growing portion of the population and have an increased incidence of cognitive impairment, approaching 50%. Most affected persons will eventually need extensive support of their ADLs from nurses and caregivers. There are special concerns when working with this population in terms of research. Particularly, researchers must carefully address the issue of informed consent, and be certain that these individuals are adequately represented and protected. In addition, to develop effective strategies to describe and intervene in the care of these individuals who may be verbally unavailable to accurately report information, researchers need to use innovative methods of data collection. Specifically, researchers need to develop a repertoire of methods to capture meaning from behavior. As behavior is often unpredictable among persons with cognitive impairments, characterizing and categorizing behavior becomes exquisitely challenging for the researcher. Moreover, the method of data collection, real-time observation versus caregiver recall, may influence the findings.
The issue of informed consent is one that is currently of great interest to researchers and those interested in the protection of research subjects. Older adults with cognitive impairment deserve the opportunity to engage in research, and have innovative types of care services available to them. At the same time, their safety must be maintained. It is standard to use a specific mini mental status, or other screening tool, as a guideline to determine the older adults’ ability to consent to participate. The researcher generally makes a decision to use the individual’s power of attorney for health care to decide on participation in a research study when the individual is deemed unable to adequately consent to do so. It is essential, however, to have the individual demonstrate willingness to participate as well. Techniques for determining ability to consent and assent for cognitively impaired older adults will be described.
Problems with Various Types of Methods: Persons with moderate to severe cognitive impairments may not be amenable to assessment techniques designed for persons able to recall and accurately report information. Caregivers’ reports of behavior or responses are filtered through the lens of their perception. Informal caregivers may report what they wish was occurring while formal caregivers may be influenced by the context of care. Real-time observation is in its nascent stage in this population. Several methods are available to researchers at this time: 1) caregiver’s report of aggregate data (e.g., behavior over the past 7 days), 2) caregiver’s report is compared to researcher’s observation in specific domains, 3) researcher observes using a taxonomy of behaviors/ responses, 4) researcher observes creating a system for interpreting data. Five representative instruments/ methods will be discussed: the Cohen-Mansfield Agitation Inventory (Cohen-Mansfield, Marx, Rosenthal, 1989), the Interaction Behavior Measure (McCrosky & Wright, 1971), the Communication Observation and Communication Assessment Scale (Tappen, Williams-Burgess, Edelstein, Roukey & Fishman, 1997) description of interactions using hand-held computers (Robinson, 1996) and micro-analysis of videotapes of feeding interactions (Phillips & VanOrt, 1993). All of these instruments or methods can be used to evaluate behavior of persons with cognitive impairments. All tap the domains of behavior, yet the method influences the report of those behaviors which influences research findings.
Discussion: Discussion will focus on a critique of existing real-time observational research concerning persons with cognitive impairments. The validity of this type of research will be discussed compared to caregiver report. The resource-intense nature of real-time observation methods will be juxtaposed against the pragmatics of caregiver report. Finally, one study that compared findings from the Minimum Data Set -- Behavioral Assessment, which was completed by a nurse using informants, and the Mini-Mental Status Examination, which was completed by researchers who tested individuals with cognitive impairments, will be discussed as one exemplar of this type of methodological work. Overall, real-time observation will be recommended as the preferred method of evaluating outcomes among persons with cognitive impairments.
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