Life Interrupted: The Experience of Informal Caregivers of Aging Family Members

While publicly-funded long-term care services have traditionally focused on institutionally-based care, informal family caregivers provide 80% of all long-term care in the US (Thompson 2004). This caregiving is physically and mentally demanding, unpaid, and often performed while the caregiver is balancing work and family responsibilities. With stress process theory (Pearlin 1989) as a guide, this research utilizes a mixed methods approach to study the relationships between the objective demands of caregiving, caregiver burden, and caregiver mental and physical well-being; whether burden mediates these relationships; how caregivers experience the demands of caregiving as stressful; and how they utilize coping strategies to manage these stressors. The study sample consisted of 418 caregiver and care recipient dyads enrolled in the NH Family Caregiver Support Program. Quantitative data were derived from structured social survey data collected on both caregivers and care recipients, first upon entry into the program and again at six months. Qualitative data were derived from semi-structured interviews with 20 caregivers. Findings from the study indicate that burden is significantly related to caregiving well-being and, in fact, mediates the relationship between caregiving demands and caregiver well-being. In addition, employment is found to be directly related to lower depressive symptoms, and increased age is directly related to lower caregiver burden. Flexible and supportive employers are important in order for caregivers to manage the competing roles of employment and caregiving. Coping strategies utilized by caregivers include efforts to positively frame or change the meaning of the caregiving experience, efforts to change the caregiving situation itself, and seeking and utilizing social supports and resources. Informal, unpaid, family caregivers are the under-recognized cornerstone of the long-term care system in the United States. From both a social and fiscal policy perspective, it is critical that policy makers prioritize supports to these informal, family caregivers