Caregivers in distress: Using interRAI assessments to target and evaluate community based interventions

Abstract

Background: Informal caregivers have a fundamental role in our society with the provision of unpaid care for family members or friends that may otherwise be unable to live in their homes. However, caregivers may jeopardize their own physical and mental health leaving them unable to continue caring for older persons with complex health needs. Objectives: Data from interRAI instruments and other sources were used to: a) develop and evaluate a caregiver survey; b) develop a screener to identify caregivers at risk of adverse outcomes; c) examine caregiver and care recipient predictors of long term care home admission and d) evaluate a respite intervention for distressed caregivers. The model of caregiver distress proposed by Pearlin et al. (1990) was used as a conceptual framework for this research study. Methods: interRAI assessments serve as either the main or the secondary dataset used for analysis. In chapter three, the psychometric properties of the caregiver survey were examined using factor and frequency analysis and a reliability test. Information on the caregiver survey was used to develop and evaluate a caregiver screener using frequency analysis and logistic regression models in chapter four. In the next chapter, survival models and generalized estimating equations were used to identify caregiver and care recipient items in the RAI-Home Care (RAI-HC) as predictors of long term care home admission. The evaluation of a respite service examined changes in the caregiver distress index and items from the caregiver survey using paired t tests. Changes in the caregiver items of interRAI assessments of care recipient from the respite program and a similar cohort were compared using logistic regression models. Rates of long term care home admission and length of time before admission were compared using survival models. Results: Three domains were identified in the caregiver survey: 1) psychosocial resources and well-being; 2) physical; and 3) mental health. This study also showed a significant association between care recipient depression and caregiver feelings of loneliness and poor self-esteem. The caregiver distress index developed as part of this research identifies low, moderate and high risk levels for adverse outcomes. Compared with the low risk group, caregivers in the high risk group were more likely to visit the doctor or nurse practitioner, self-report poor health, and report that the care recipient would be better off elsewhere. The RAI-HC predictors of long term care home admission were: care recipient MAPLe score, age, caregiver distress, caregiving dyad relationship, and living arrangements. There was an interaction between caregiver and care recipient coresidence and caregiving dyad relationship. A care recipient cared by a coresiding child caregiver was less likely to be admitted to a long term care home than a care recipient cared by a coresiding nonchild caregiver. In the respite program evaluation, an overall improvement in the frequency of mood items and positive symptoms were observed for all caregivers participating in the program. Caregivers in the moderate risk group experienced an increase in pain frequency and inability to go where they wanted in the spur of the moment. While the odds for improving caregiver distress was not affected by caregiver participation in the respite program, the odds of improvement in the caregiver ability to continue was notably higher for caregivers in the respite program. The length of time before institutionalization was greater for care recipients with MAPLe 5 in the respite program than for care recipients with MAPLe 5 receiving home care services from a local agency. Conclusions: This dissertation highlights the complexity involved in caregiving experiences and the need for valid and reliable assessments for understanding caregiver issues and their needs. The caregiver distress index can be used to identify caregivers at risk of adverse outcomes that would benefit from respite and further assessments. Analysis including interRAI assessments for the care recipient and caregivers identified the positive impact of a respite program on caregiver quality of life and also for delaying institutionalization emphasizing the value of these assessments for the development, evaluation and allocation of resources for caregiver interventions.