Assessment of Dementia Family Caregivers 10 Carey Wexler Sherman, Louis D. Burgio, Jennifer D. Kowalkowski p0010 The integral role of the family caregiver (CG) is well established in the research and treatment literature (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; Feinberg, 2002; Schulz & Beach, 1999; Vitaliano, Zhang, & Scanlan, 2003). Such family care has been shown to be protective for care recipients with dementia who, as a result, remain longer in the community and delay institutionali- zation (Pruchno, Michaels, & Potashnik, AQ1 1990; Whitlatch, Feinberg, & Stevens, 1999). Extensive research demonstrates, however, that prolonged and challenging family caregiving can induce a litany of adverse physical and mental health effects (see reviews by Gaugler, Davey, Pearlin, & Zarit, 2000; Pinquart & Sorensen, 2003, 2005; Vitaliano, Zhang, & Scanlon, 2003). Public policy in the United States relies heavily on the provision of home-based intensive and long-term family care for relatives with chronic health concerns (Stone, 2000; Thompson, 2004). Family caregivers currently provide over $250 billion dollars in unpaid labor (Arno, AQ2 2002), and the numbers of families impacted by lengthy periods of caregiving will only increase as the population ages and dementia prevalence increases (Herbert, Scherr, Bienias, Bennett, & Evans, 2003). p0015 Negative physical health outcomes that have been associated with caregiving include weaker immune response (Kiecolt-Glaser, Glaser, Gravenstein, Malakey & Sehridan, AQ3 1996), chronic sleep disturbance (McCurry, AQ4 2006; Rausch, Baker, & Boonmee, 2007), cognitive decline (Caswell et al., 2003), and greater risk for morbidity and mortality (Schulz & Beach, 1999). Such adverse effects can also threaten the quality of care provided to the patient. Family caregiving has also been associated with deleterious mental health effects, including higher rates of depression and anxiety (Pearlin & Anes- hensel, 1994), caregiver burden and stress (Zarit, Davey, Edwards, Femia, & Jarrott, 1998; Vitaliano, Young & Russo, 1991), and increased isolation and loneliness (Beeson, Horton-Deutsch & Farran, AQ5 2001; Bergman-Evans, 1994). Research in recent years has also highlighted the positive outcomes of care- giving. Many caregivers report feelings of satisfaction, fulfillment and growth from their contributions to assuring the well-being of their care recipient (Buffum & Brod, 1998; Farran, Keane-Hagerty, Salloway, Kupferer, & Wilken, 1991; Roff, Burgio, Gitlin, Nichols, Chaplin & Hardin, AQ6 2004). p0020 Recent caregiving meta-analyses and reviews increasingly recognize and reflect the complex, transactional and multifaceted nature of the caregiving experience for patients and their family members (Pinquart & Sorenson, 2005). At the same time, a recent report by the National Center on Caregiving at the Family Caregiver Alliance ( AQ7 2006) reiterated concerns that systematic assessment of the circumstances or well-being of family caregivers in community settings is still underutilized and under-examined (Baxter, 2000; Feinberg, Whitlatch, & Tucke, 2000). Zarit, Femia, Kim and Whitlatch (in press) highlight the growing recognition that “caregivers possess unique combinations of risk factors and outcomes that suggest the need for individualized or tailored inter- ventions” (p. 2). Similarly, researchers have noted that the array of personal and situational stressors CHAPTER Handbook of Assessment in Clinical Gerontology. DOI: 10.1016/B978-0-12-374961-1.10010-7 Copyright Ó 2008 Elsevier Inc. All rights reserved. 241 10010-LICHTENBERG-9780123749611