Jennifer M. Kinney - US grants

Considerable research has documented that caring for a person with dementia is highly stressful. Much of this research has been conducted within a transactional model of stress, which emphasizes the importance of people's interpretations or appraisals of events as the source of stress. Two frameworks grounded in the transactional model form the basis of the proposed investigation: Pearlin's (1980, 1983) and Lazarus and Folkman's (1984). Both frameworks view stress as situationally determined by the individual. These approaches provide a useful theoretical guide for the study of perceived stress in caring for a person affected by Alzheimer's disease. Although we know that such caregiving is very stressful at times, we do not yet understand either how this perceived stress varies across problem domains, nor how it evolves over time. The proposed study incorporates key aspects of both frameworks (role, mastery, appraisal, coping and adjustment) in an attempt to address several aspects of the stress associated with caregiving over time. Specifically, the focus of the proposed investigation is on the longitudinal course of the appraisal- coping-adjustment process, especially regarding the extent of intra- and interindividual differences in this process. Participants will be 200 spouse caregivers of persons with Alzheimer's disease or a related dementia. Caregivers will be assessed monthly for six consecutive months to determine the stability of stressors in their situations. Aspects to be assessed include: mastery (the degree to which people fell in control of situations), daily hassles associated with caregiving, appraisals of the most significant stressors in each of five areas of caregiving, coping attempts, perceptions of change in the caregiving situation over time, and physical and mental health adjustment. This design will permit examination of the degree of stability or change in different aspects of caregiving and their relationship to changes in perceived stress, topic that has not been adequately researched to date. Periodically, care-recipients will be re- evaluated to ascertain their current cognitive and functional status. These assessment permit examination of possible relationships (and changes therein) between care-recipient status and caregivers' perceived stress. Data analyses will examine the replicability and generalizability of previous findings concerning stress, the extent of inter- and intraindividual differences in the appraisal-coping-adjustment process over time, and longitudinal relationships among the variables. A combination of complex, multivariate techniques will be used to analyze these data.

[unreadable] DESCRIPTION (provided by applicant): Currently, researchers are developing/evaluating technology-based interventions to reduce the burden associated with family caregiving to a relative with Alzheimer's disease (AD). However, the literature on these efforts is virtually silent on the most fundamental issues introduced by these interventions: the potential conflict/contradiction among individual values of privacy, safety and personal control, and caregivers' trust in specific technological interventions. In this R21 application, we employ a novel technology-based intervention with which he have experience in the homes of family caregivers to relatives with AD to address a set of specific aims related to these issues. Questions derived from these aims include, among others: How do caregivers to older adults with AD define privacy and choose to exercise control in the caregiving context? How do definitions of/desire for privacy differ between caregivers who have specific experience with a monitoring technology and their peers with no such experience? What are caregivers' intended and unintended uses of and experiences with the monitoring technology? Using a quasi-experimental design, we will enroll 40 family caregivers who care for a relative with AD at home - 20 in an intervention group with a monitoring technology system installed in the home and 20 in a comparison group who do not receive the monitoring system. Participants in both the intervention and comparison groups will complete an in-home, baseline interview during which a structured paradigm will be used with open-ended questions to prompt caregivers to describe the personal meaning and importance they attach to the safety of the family member with AD, their own privacy (and that of the family member), and a sense of control in the caregiving role. Participants will also be asked to assess domains of QOL, as well as their expectations for/experiences with the monitoring technology and their trust in the technology. Standardized quantitative measures will document caregivers' general mastery, key components of the caregiving stress process (e.g., caregiving hassles, depressive symptomatology). A Dementia Rating Scale will be administered to the person with AD. Intervention participants will complete a 12 week follow-up with the same measures and participants in both groups will complete a 24 week follow-up in home interview with the same measures. A mix of qualitative and quantitative analytic tools will be applied and working hypotheses will be tested. [unreadable] [unreadable] [unreadable]