Resilience and Family Caregiving
Coon, David W., Annual Review of Gerontology & Geriatrics
Family caregiving for people with dementia and grandparents raising grandchildren both remain critical issues for our increasingly diverse and aging society. Very little research has focused on the role of resilience in either of these caregiving literatures, thereby creating opportunities for researchers, practitioners, and policy makers to drive future agendas including the development, evaluation, and dissemination of caregiver interventions grounded in resilience frameworks. This chapter reviews key issues related to caregiver resilience and makes several recommendations to help move its study and application forward, including the use of mixed-methods and prospective longitudinal designs, the application and evaluation of relevant theoretical frameworks, and the examination of interventions at different levels that target both mental and physical health outcomes with diverse populations.
Family caregivers are the backbone of long-term care, with over 45 million Americans providing an average of 21 hours per week of unpaid care to impaired older adults (National Alliance for Caregiving [NAC] & AARP, 2009). However, family caregiving for older adults, particularly older adults with Alzheimer's disease or a related disorder (ADRD), comes with other price tags, including well- documented negative physical, emotional, and social outcomes ranging from depression and poor health to social isolation and increased risk of mortality (e.g., Coon, Ory, & Schulz, 2003; Sörensen & Conwell, 2011). To date, the vast majority of research on caregiving for older adults focuses on the negative outcomes associated with the caregiving role; as a result, a growing body of research in the last two decades has focused on the development, implementation, and evaluation of interventions to address these negative outcomes (Coon, Keaveny, Valverde, Dadvar, & Gallagher-Thompson, in press; Gallagher-Thompson & Coon, 2007).
Similarly, grandparent caregivers experience many negative physical and mental health consequences including personal (e.g., poor physical health, insomnia, depression, role overload), interpersonal (poor relations with adult children, struggles with parenting, social isolation, marital strife), and economic consequences. These negative outcomes are above and beyond those experienced by their noncaregiving grandparent peers (Hayslip & Kaminski, 2005; Goodman, Scorzo, Ernandes, & Alvarez-Nuñez, in press; Musil et al., 2010). The impact on grandparents continues to grow with the number of children younger than 18 years living with grandparents increasing from 8% in 2001 to 10% in 2010 totaling almost 7.5 million children living with their grandparents in 2010. Twenty-two percent of those children were living without one of their parents in the household (U.S. Bureau of the Census, 2010).
What Makes Caregiving Stressful?
For caregivers to impaired older adults, the stress often multiplies with cumulative disease progression, unpredictable care recipient moods and behaviors (particularly with ADRD patients), diminished social support and constriction of social outlets, and a lack of preparedness to meet demands (Coon et al., in press; Coon et al., 2003; Mausbach et al., 2007). For grandparents, their caregiver stress is often associated with their adult child including feelings of disappointment and resentment in addition to the various care demands of raising a grandchild, especially if that grandchild has developmental, emotional, or behavioral difficulties (Hayslip & Kaminski, 2005; Hayslip & Shore, 2000). Many grandparent caregivers take on the caregiving role while they are grieving the loss (e.g., death or incarceration of an adult child or child-in-law) that put them in the role. Typically, these stressors are magnified as they also deal with the grief or loss expressed by their grandchildren (Hayslip & Kaminski).
Researchers, practice professionals, administrators, and family caregivers themselves sometimes forget that caregiving occurs in a context. …