Caregiver Burden, Depression, and Social Support: Relations to Dementia Severity and Behavioral, Cognitive and Functional Problems in Persons with Alzheimer Disease

Alzheimer disease (AD) is a chronic disease with an insidious onset, and family caregivers are often involved in round-the-clock caring over the long-term. This is an 18-month longitudinal study (which the researchers expect to complete in three years) to investigate the determinants of burden and depression in AD caregivers in Hong Kong. 200 primary caregivers (providing at least 20 hours of care per week) of AD patients 65 years or older will be recruited on a consecutive basis from psychiatric and psychogeriatric clinics. Quota sampling will be used so that there will be 100 caregivers for patients with mild dementia, and another 100 for patients with moderate dementia. They will receive an interview every 6 months over an 18-month period (i.e., 4 waves including baseline). The outcome measures are subjective burden and depression of the caregiver. The primary predictors are the social support available to the caregiver, and various patient variables including dementia severity, behavioral and psychological symptoms of dementia, functional impairments, and cognitive impairments. The researchers will investigate how caregiver burden and depression change over time as the patient's dementia status becomes more severe. In doing so, the roles played by social support and the patient's behavioral, cognitive and functional problems will be examined. Specifically, the researchers postulate a model in which the patient's behavioral, cognitive and functional problems lead to less social support received from network members, which in turn leads to increased burden, and then increased depression. Finally, this study will examine in detail the social support available to the caregivers, by looking at the nature of help they receive from different network members (inc. domestic helpers), and the basis for feeling satisfied, or dissatisfied, with the support they receive, in order to reveal the gap in support to caregivers.