Who Cares for Caregivers? Evidence-Based Approaches to Family Support

Currently, more than one in 10 Americans are caregivers, and projections suggest exponential increases in caregiving in the years ahead. Not only is the population growing older, but the spike, in particular, created by the aging of some 78 million baby boomers portends far greater demand. Families continue to represent the lion’s share of caregivers and their caregiving efforts are substantial in every sense of the word. Nationally, 15.4 million caregivers provide approximately 17.5 billion hr of unpaid care valued at more than $216 billion (Alzheimer’s Association, 2014). Estimates suggest that at least 90% of older adults who receive care obtain it from their families, either unaided or supplemented by paid care (Houser, Gibson, & Redfoot, 2010). Older adults who require caregiving receive, on average, 20 hr of assistance each week (MetLife Mature Market Institute, 2006).

Traditionally, family caregiving has involved assistance with daily activities (e.g., bathing, dressing) and household activities (e.g., shopping, managing finances). In recent years, the caregiver role has expanded to include performance of increasingly complex medical/nursing tasks for care recipients who have multiple chronic physical and cognitive conditions. These tasks include managing multiple medications, handling incontinence needs, helping with the adoption of assistive devices, and more (Reinhard, Levine, & Samis, 2012). Although this shift in the type of care families provide helps avoid institutionalization, it may also have profound effects on the quality of life for caregivers.

Families may take on the caregiving role willingly, but often at significant cost to the health and psychosocial well-being of the caregiver (Feinberg, Reinhard, Houser, & Choula, 2011). One-half (53%) of caregivers report their ability to continue providing care is affected by declines in their own health and the lack of time to care for themselves (National Alliance for Caregiving & AARP, 2009). Compared with noncaregivers, caregivers of people with dementia are at greater risk of chronic disease, increased health care use, and mortality (Alzheimer’s Association, 2014). In 2012, the impact of dementia-related caregiving was estimated at about $9.1 billion in health care costs in the United States (Feinberg & Houser, 2012).

This special issue of the Journal of Gerontological Social Work addresses the question “Who cares for the caregiver?” Accordingly, we highlight programs that support caregivers through varied approaches, providing comprehensive assessment and person-centered approaches to meet caregiver needs, as well as empirical evidence regarding improved caregiver outcomes (e.g., reduced burden, improved well-being). Despite growing awareness of the toll that caregiving can impose, until recently, caregiver support was largely comprised of information and referral and/or caregiver support groups.

In 2009, an $8.4 million national caregiver support initiative was launched by the Harry and Jeannette Weinberg Foundation to develop capacity for comprehensive approaches to caregiver programming. The 3-year initiative provided funding for 14 community-based projects in eight states to develop collaborative approaches to deliver comprehensive services (e.g., assessment and care management, respite, transportation, home care, etc.) to caregivers. Six articles in this special issue were funded through the Weinberg Caregiver initiative (Black, 2014; Iris, Berman, & Stein, 2014; Kally, Cherry, Howland, & Villarruel, 2014; Kally, Cote, et al., 2014; Rosenthal Gelman, Sokoloff, Graziani, Arias, & Peralta, 2014; Sundar, Fox, & Phillips, 2014). Together, the articles in this special issue provide a foundation for continuing to create services and support for caregivers. A brief overview of the key contributions from this issue is provided in the next section.

ASSESSING THE EVIDENCE

Two of the articles in this issue are systematic overviews. A well-done systematic review is often the basis for development or further refinement of evidence-based programs. First, Stenberg, Ekstedt, Olsson, and Ruland (2014) examine the international research literature dealing with family caregivers’ experiences in coping with cancer to identify how social workers may provide support in challenging situations. A second (Smith-Osborne & Felderhoff, 2014) systematic review addresses family caregivers in the sandwich generation caring for veterans with psychiatric and neurological disabilities. Although much of the caregiving literature has focused on dementia, relatively little is known about how to support caregivers who are raising children and caring for older adults simultaneously. A resilience framework is proposed to support adaptive coping and development of protective mechanisms needed to cope with the ongoing challenges associated with caregiving.

TESTING EVIDENCE-BASED MODELS IN THE COMMUNITY

Evidence-based models are generally developed and tested in controlled research settings. As a result, successful program implementation of these service interventions at the community level can be fraught with challenges that include: limited resources and funding, establishing partnerships, outreach to targeted groups, training professionals, and ensuring fidelity in translation. In this issue, Black (2014) addresses fidelity in delivering an innovative model of care with caregivers by using a quasi-experimental design that demonstrated significant improvements in core caregiver outcomes. Another project by Paone (2014) evaluates the implementation of an evidence-based program with 14 organizations in Minnesota, and points to the challenges of ensuring adherence to program protocols. The use of the Reach Effectiveness Adoption Implementation Maintenance (RE-AIM) framework for evaluation illustrates the importance of a systematic approach in assessing interventions.

Several articles replicate evidence-based programs for dementia caregivers (Menne et al., 2014; Samia, Aboueissa, Halloran, & Hepburn, 2014). The University of Washington developed an in-home program for caregivers of older adults with dementia that was implemented in Ohio, with 219 caregivers (Menne et al., 2014). The multifaceted program includes an exercise program for persons with dementia, caregiver techniques for managing behavioral symptoms, and dementia education. The evaluation tests the feasibility of this caregiver intervention in a community setting. Similarly, a translational study of a psycho-educational program implemented in 16 counties in rural Maine identifies challenges that include adequate planning, trainers who are professionals, and the challenges of ensuring fidelity when adapting the program to the local contexts (Samia et al., 2014).

ADDRESSING DIVERSITY

Several articles focus on the impact of interventions for minority caregivers. The Caregiver Ombudsmen Outreach Program tests an innovative model of care management for an ethnically diverse population. Countering the assumption that minority caregivers are reluctant to use services, Rosenthal Gelman et al. (2014) find that ethnically diverse caregivers in a New York City neighborhood have significant stressors and want direct support and services and particularly, respite care. Kally, Cote, et al. (2014) assess the effectiveness with ethnically diverse caregivers of a caregiver training program (i.e., Savvy Caregiver Program) that has previously been used only with Caucasian caregivers. Finally, Internet access and use is pervasive and may make it easier for caregivers to access support. An evaluation of a bilingual and culturally appropriate international web site for Spanish-speaking dementia caregivers suggests the benefits of social media platforms and the accompanying challenges of assessing impact (Pagán-Ortiz, Cortés, Rudloff, Weitzman, & Levkoff, 2014).

COLLABORATIVE NETWORKS AND CAPACITY

Developing collaborative networks can increase capacity to support caregivers in a more comprehensive way by pooling of resources. The Dementia Care Network (DCN) is a well-established model for providing culturally-competent dementia care to underserved ethnic groups. This collaborative model, originally tested with Hispanic caregivers, is expanded to the Asian Pacific Islander (API) community (e.g., Chinese, Japanese, Filipino; Kally, Cherry, et al., 2014). The API-DCN develops capacity for dementia care and then ensures sustainability by embedding services within partner organizations. Similarly, Iris et al. (2014) focus on developing a network of faith-based organizations serving an African American population that mobilizes volunteers and increases capacity to address caregiver needs. The resulting network analysis and change stories offer a rich illustration of how an evaluation methodology can capture more elusive measures such as the impact of spiritual support and religiosity on caregivers. Lastly, Sundar et al. (2014) evaluate a multicomponent intervention for caregivers and find that a person-centered approach is key to address differences in the experience of burden by adult children and spousal caregivers.

The articles in this issue reemphasize the need to care for the caregivers. They also suggest that we are just beginning to understand what works and that many gaps remain in developing the necessary supports to enhance caregiving efforts and counter the stresses, strains, and burden of the caregiving experience. We do know that for caregiver programs to be most effective and sustainable, they need to commit themselves to building strong and lasting partnerships that reach out to both the formal and informal resources in a given community, engage stakeholders in meaningful ways (including caregivers themselves), respect the culture and traditions of those served, recognize the multidisciplinary supports (social service, long-term care, and health) that are likely to be needed over the life of the caregiving experience, and continuously assess the experience and document impact.

For over 3 decades, former First Lady Rosalynn Carter has called attention to the needs of family caregivers and cited the importance of programs that support caregivers and help prevent burnout. According to Carter (1997): “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” Her prescient words are as relevant today as they were spoken decades ago. As a society, we must do more to support the growing cadre of our nation’s caregivers. Furthermore, our programmatic efforts should demonstrate empirical results that enhance the caregiving experience. We believe this issue illustrates the most current programmatic thinking in the design and delivery of efficacious interventions meant to meet this important goal.