The Stress Process Model and In-home Respite for Caregivers of Cognitively and Physically Impaired Older Adults

Common problems in the family caregiving respite outcome literature include little attention to in-home respite, lack of theoretical grounding, and low rates of respite utilization. This dissertation study utilized the predominant model of family caregiving stress, the Stress Process Model (Aneshensel et al., 1995; Pearlin et al., 1990), to (1) investigate the variables through which in-home respite impacts caregivers and to (2) investigate the factors that predict utilization of respite services. Participants (N = 74) were family caregivers receiving federally subsidized in-home respite. Results indicate that both prior hours of in-home respite services and respite time devoted to non-care related chores were significantly related to reduced levels of caregiver depression. Longitudinal data pertaining to 3-month in-home respite utilization reveal that prior in-home respite service usage was the best predictor of future service use. The implications of these data for the provision of in-home respite services and future research are discussed. Stress Process and In-Home Respite 6 Acknowledgements This research was funded by Grant Incentive Funds to Dr. Ann Steffen from the Department of Psychology, University of Missouri-St. Louis and a Dissertation Fellowship awarded on February 19, 2007 by the Graduate School, University of Missouri-St. Louis. Data for this research was collected in collaboration with the Mid-East Area Agency on Aging (MEAAA) in St. Louis, Missouri. I extend my sincere thanks to Lisa Beatty, Director of Case Management, and to all of the case managers who assisted in the data collection efforts. Most importantly, I am very grateful to the family caregivers who were willing to share their time and experiences for the purpose of this dissertation research. Thanks also to Dr. Ann Steffen, my research advisor, teacher, and mentor. As I think back on my time in graduate school, your supportive and positive presence was constant. I consider myself quite lucky to have found my professional role model so early in my career. You have been my guide throughout this process, and I am forever grateful for your direction. I would also like to acknowledge the efforts of my dissertation committee: Dr. Robert Calsyn, Dr. KueiHsiang Hsueh, and Dr. Matthew Taylor. This completed manuscript would not have been possible without your insightful suggestions and recommendations from the conception of the initial research proposal to the completion of this study. I would also like to take the opportunity to recognize my most important source of support in every respect: my family. Thank you for seeing me through the peaks and valleys of graduate school and every other experience. I am blessed to be part of such a close-knit and fun group. Stress Process and In-Home Respite 7 Finally, this dissertation is dedicated to Josh: my husband, best friend, and unwavering supporter. After making many attempts, I have realized that it is impossible to find the words to appropriately acknowledge and thank you for your continuous encouragement and support during this process. So, I am going to keep it simple and say that I will always be immensely grateful to you for taking this and every journey with me. Stress Process and In-Home Respite 8 The Stress Process Model and In-home Respite for Caregivers of Cognitively and Physically Impaired Older Adults Providing care for a disabled loved one is a physically and emotionally demanding longterm activity (Schulz & Martire, 2004). Currently, 41.9 million Americans over the age of 65 suffer from a disability, and 27.2 million Americans identify themselves as informal caregivers (Feinberg, Newman, Gray, Kolb, & Fox-Grage, 2004). These figures will become even larger as the U.S. elderly population continues to grow. By the year 2030, it is estimated that persons aged 65 and older will comprise 18.6% of the population, whereas this group comprised only 12.4% in 2000 (U.S. Census Bureau, 2004). The implications of this population increase are significant in regard to disability. Persons are living longer; thus, more individuals will suffer from chronic illnesses of longer duration, and will require assistance from family (Schulz & Martire, 2004). Family caregiving has been associated with numerous adverse physical and mental health outcomes. Reviews of the caregiving literature indicate that family caregivers engage in fewer preventative health behaviors (Schulz & Martire, 2004) and view themselves to be in poorer physical health than non-caregivers (Pinquart & Sorenson, 2005). Family caregivers may be at a heightened risk of negative physical outcomes due to high levels of stress hormones, low levels of antibodies (Vitaliano, Zhang, & Scanlan, 2003), cardiovascular reactivity, and slow wound healing (Schulz & Martire, 2004). Although the data in regard to negative physical health outcomes are currently inconclusive, research findings in regard to mental health outcomes are clearer (Pinquart & Sorenson, 2005; Vitaliano et al., 2003). The psychological impacts of caregiving include a heightened susceptibility to clinical depression and depressive symptomatology (Pinquart & Sorenson, 2005; Schulz & Martire, 2004), anxiety (Schulz & Stress Process and In-Home Respite 9 Martire, 2004), increased rates of emotional distress, and reduced subjective well-being (Pinquart & Sorenson, 2005). Caregivers who are spouses (Butler, Turner, Kaye, Ruffin, & Downey, 2005), female (Dunkin, Anderson-Hanley, & Cummings, 1998; Pakenham, 2001; Schulz & Martire, 2004), and with lower income (Covinsky et al., 2003; Dura, Stukenberg, & KiecoltGlaser, 1991) are particularly susceptible to negative psychosocial outcomes. Although researchers have determined that care recipient variables (such as behavioral problems, cognitive impairment, and functional impairment) significantly predict nursing home placement, they have concluded that family caregiver physical and mental health variables significantly predict rates of institutionalization, above and beyond these common care recipient problems (Dunkin et al., 1998). In 2000, the federal government allocated 18.2 billion dollars in Medicaid funding to long-term care for Alzheimer’s patients alone, and this number is expected to increase to 33 billion dollars per year by 2010 (Alzheimer’s Association, 2001). Clearly, from not only a moral, but also a fiscal standpoint, it is imperative to provide family caregivers with the community resources they need in order to maintain their own physical and psychological health while caring for an impaired elderly family member. In recognition of the plight of family caregivers, the federal government passed Public Law 106-501 in 2000 as an amendment to the Older Americans Act. This legislation created the National Family Caregiver Support Program (NFCSP), a government program with the goal of providing caregivers the necessary community supports to delay the institutionalization of impaired family members. The NFCSP is funded by federal and state monies and is implemented locally by Area Agencies on Aging (AAA). This program offers qualifying family caregivers information and assistance regarding accessing available community services. Stress Process and In-Home Respite 10 Additionally, and more importantly, a core component of this program is the provision of federally subsidized respite care. The primary goal of the current study is to better understand respite services as they are utilized within the community. An existing sample of community family caregivers currently receiving NFCSP in-home respite services through the Mid East Area Agency on Aging (MEAAA) (N = 154) was contacted via telephone and invited to participate in the study. Interested and eligible caregivers (N = 74) participated in telephone interviews lasting approximately one and one-and-one half hours and involving questions regarding care recipient problems (i.e., functional impairment, cognitive impairment, behavioral disturbance), family caregiver psychosocial variables (i.e., depression), and family caregiver use of respite time. Participants also completed mail-back questionnaires involving demographic questions and questions pertaining to care recipient functional ability. The MEAAA provided objective inhome service usage data for the three months following each participant’s telephone interview. It is hypothesized that the variables of family caregiver discretionary time and non-care related chore time on a typical respite day will be significantly related to family caregiver depressive symptoms, after controlling for relevant variables. Additionally, it is hypothesized that for family caregivers currently using in-home respite services, contextual variables (i.e., non-spousal caregivers and higher income) and elevated levels of care recipient problems will predict higher rates of respite utilization. Respite Services Formal respite care is a community resource in which paid professionals provide quality supervision for an impaired family member while offering the caregiver the opportunity for temporary leave from the caregiving situation. This resource is offered in three main formats: inStress Process and In-Home Respite 11 patient respite care, adult day care, and in-home care. In-patient respite care consists of a fixed, non-interrupted period of time (typically one to two weeks) in which the care recipient resides in a hospital, rehabilitation center, or skilled nursing facility (Gräsel, 1997). Compared to inpatient respite, adult day care (ADC) is a less intensive form of ongoing respite in which care recipients are transported one or more times per week to an agency within the community that provides day services such as supervision, meals, activities, health care, and various therapies (Gaugler, Jarrott, Zarit, Parris-Stephens, Townsend & Greene, 2003b). ADC services differ in the extent to which they are medically focused (i.e., focused upon medi