Formal long-term care: Informal caregivers’ subjective well-being and service utilization

Abstract

This dissertation was primarily motivated by the twin phenomena of falling formal long-term care service (LTCS) demand and unrelenting deleterious effects on informal caregivers’ subjective well-being across urban societies. These phenomena run counter to the needs of ageing populations, that presents challenges of a rise in chronic degenerative illnesses and long-term disabilities, and associated crowding at acute treatment facilities. The limited effectiveness of increasing formal LTCS supply to meet these challenges has led to transformation of health care systems in order to influence demand for LTCS. Using three studies, this dissertation investigated the extent to which informal caregivers’ subjective well-being influences the utilization of public long-term health and social care services. Taken together, the results obtained showed that there exist substantial associations between each of caregiver burden, depression and health status and LTCS use. Chapter 2 presented quantitative syntheses of reported research on this topic to-date. Research studies that involved fewer female (than male) informal caregivers reported 86% higher odds of caregivers experiencing higher depression levels associated with LTCS use by patients. I also found that there were unexpectedly few studies that provided quantitative data on this topic despite the many years of research involving informal caregiving in the context of LTCS. Using a longitudinal Singapore sample of stroke survivors and their informal caregivers, Chapter 3 showed that caregiver depression and caregiving burden are concurrent and prospective predictors of LTCS use respectively. After controlling for covariates, I found that caregivers who felt more burdened (found caregiving to be time consuming and difficult) at 3-month post-stroke, and those who were more depressed at 12-month post-stroke tend to have their wards use stroke rehabilitation at 12-month post-stroke. Using the same sample, Chapter 4 showed that caregiver burden, depression and health status are useful indicators of latent caregiver psychosocial distress profiles that differ with regards to LTCS use. After controlling for covariates, I found that non-distressed caregivers at 12-month post-stroke tend to have wards who are stroke rehabilitation service users at the same time point. Theoretically, these results provide partial support for the concept caregiver resilience, and show that explanatory frameworks for LTCS use should include caregiver psychosocial characteristics such as caregiver burden, depression and health status. Practically, these results are evidence of the importance of early and sustained caregiver psychosocial interventions, and provide support for integrated care models that consider the patient-caregiver dyad as the recipient of care.