Care for older adults with chronic, disabling health conditions has entered a new chapter, one with far-ranging implications for families, communities, health care, and even the economy. The current system does not adequately support the needs of those routinely providing extensive help with daily activities, delivering complex medically-related services, and coordinating health care and long-term services and supports.
To explore the issues and various initiatives aimed at addressing the needs of caregivers and the ones they provide care for, Grantmakers In Health (GIH) and Grantmakers in Aging (GIA) cohosted a strategic conversation focused on how philanthropy can play a critical role in meeting the needs of caregivers, older adults, and the communities they work and live in.
|Activities of Daily Living (ADLs): Those daily activities a person normally does for self-care (e.g., feeding, bathing, dressing, grooming).
Instrumental Activities of Daily Living (IADLs): Those life functions necessary for maintaining a person’s immediate environment (e.g., housework, cooking, managing finances).
Medical/Nursing Tasks: Care activities typically performed by medical or nursing professionals (e.g., injections, tube feedings, colostomy care).
An Issue for All Funders
Caring for older adults is a growing issue affecting millions of people. In addition to more than 2 million professional home health care workers, there are approximately 17.7 million family members, partners, neighbors, and friends acting as caregivers for older adults. The need for family caregivers will continue to rise, as there will be an estimated 72.8 million Americans over the age of 65 by 2030. Communities of color will be particularly affected as nearly 30 percent of all older adults will be people of color. Furthermore, these older adults of color will be more likely to have functional impairments than their white counterparts (NASEM 2016).
Family caregivers come from every age, gender, racial, and socioeconomic group. While the typical caregiver is a 49-year-old female, the demographic is shifting younger. Millennials account for 25 percent of caregivers, and that number is expected to trend upward (Hunt 2016). Unfortunately, the pool of potential caregivers will not keep pace with the growing number of older adults (NASEM 2016). Thus, a growing number of older adults will likely be without a family care support system.
Family caregivers are a critical component of the health care workforce. They provide important long-term services and supports (LTSS) for older adults, in many cases without formal training. On average, caregivers perform two activities of daily living and four instrumental activities of daily living (Hunt 2016). Roughly 46 percent of all family caregivers also perform medical/nursing tasks for their care recipients (Reinhard et al. 2012). However, despite their important role, family caregivers are typically marginalized or ignored by the health care system and LTSS delivery system. They are often excluded from the decisionmaking, care planning, and treatment processes, and are ignored by public policy, even though these very systems and providers assume their availability to perform caregiving tasks (Fulmer 2016; Hunt 2016; NASEM 2016).
Caregivers face numerous physical, emotional, and financial challenges in finding a healthy balance between their normal daily lives and caregiving roles (Fulmer 2016; Levine et al. 2016). About 60 percent of caregivers are employed at some point during the year, and many—especially higher-hour caregivers—report that their caregiving responsibilities negatively impact their work performance. Typical issues include arriving at work late, leaving work early, taking time off, taking leaves of absence, reducing work hours, turning down promotions, retiring early, losing job benefits, and leaving the workforce entirely. Roughly 34 percent of caregivers reported insufficient work supports, such as the lack of flexible work hours or inability to afford paid assistance, as a primary reason for leaving their job. In 2013 alone, family caregiving issues cost employers an estimated $33.6 billion in lost productivity (Hunt 2016).
For many caregivers, these responsibilities weigh heavily on their health and well-being. Caregivers are more likely than their non-caregiving counterparts to report their health as poor or fair (17 percent vs 10 percent). Furthermore, 20 percent of caregivers report high levels of physical strain because of their caregiving duties, 40 percent report high levels of stress associated with their caregiving situations, and an additional 25 percent report moderate levels of stress. Many of these indicators are closely tied with whether the caregiver felt they had any choice in their caregiving role (Hunt 2016). Not surprisingly, caregivers’ stress and anxiety significantly affect family dynamics and caregiver-care recipient relationships (Levine et al. 2016).
Funder Support for Programs and Innovations
Several foundations have identified caregiver support as a priority. Their grantmaking experience highlights both the challenges of this funding area and promising ways forward.
In 2014, Archstone Foundation provided a two-year grant to the Family Caregiver Alliance in San Francisco to support the creation of a caregiver assessment tool called Care Compass (Caregiver Assessment 2.0). Care Compass is an innovative online portal that enables family caregivers to access information, training, resources, and services through a personalized dashboard. Currently, the Family Caregiver Alliance is exploring expanded testing of the Care Compass pilot. It is also conducting a formal evaluation of caregivers of adults with Alzheimer’s disease and related dementias.
Last year, in partnership with AARP California, Archstone Foundation made a two-year grant to the University of Southern California for the California Task Force on Family Caregiving. Appointed by the California Legislature, the 12-member task force seeks to improve outcomes for California’s family caregivers and their care recipients. It will examine challenges faced by family caregivers and opportunities to improve caregiver support; review the current network and the services and supports available to caregivers; and make policy recommendations to the state legislature. The foundation hopes that the lessons from this experience will serve as an example to other states interested in supporting a task force or coalition on family caregiving.
Another California funder, the Santa Barbara Foundation, has launched a “Community Caregiving Initiative” to increase awareness and advance support for caregivers within the community. The initiative focuses on providing supports and services to family caregivers, such as helping identify caregiving roles, and developing health and social systems that better integrate and accommodate family caregivers (Friss Feinberg 2016).
Several funders have also worked to include family caregiving as part of their broader health and aging funding strategies. The Tufts Health Plan Foundation, for example, has funded caregiver support programs as part of their “Purposeful Engagement” programming within their “Health and Wellness” program area. The Commonwealth Fund and The SCAN Foundation have incorporated family caregiving into their long-term service and supports (LTSS) programming. Both foundations funded the AARP Public Policy Institute’s State LTSS Scorecard, a state-level assessment tool that examines performance across five key dimensions of LTSS system performance, including supports for family caregivers (Friss Feinberg 2016).
Supporting family caregiving provides funders with many opportunities for working across sectors. One such innovative public-private partnership is the Health Resources and Services Administration’s Geriatrics Workforce Enhancement Program (GWEP). The John A. Hartford Foundation is one of the partners, providing support for the initiative’s national coordinating center. GWEP aims to integrate geriatrics into primary care through 44 academic-community partnerships across the country. This work includes training various members of the health care team alongside family caregivers. With additional funding, the program will be able to expand the trainings it offers and its geographic reach (NASEM 2016).
To meet the needs of the family caregivers and those they care for, funders and experts offer the following recommendations for grantmakers:
- Adopt or support policies that advance family caregivers. There are policy options at several levels that would significantly improve the lives of family caregivers. One example is social security credits for family caregivers who are forced to reduce their work hours or leave the workforce altogether to care for their loved ones. This policy change would protect family caregivers from being financially penalized when they reach retirement. Another policy option is caregiver-supportive workplaces. If employers offered flexible work hours, paid time-off for caregiving, and employee assistance benefits to pay for professional caregiving, it could dramatically reduce the stresses and economic burdens on family caregivers. Grantmakers can play an important role in helping to bridge relationships with employers, educating them on the potential health and economic benefits of these policies.
- Improve clinician education about caregivers. Clinicians are not typically educated about caregivers’ important role as part of the health care team, which contributes to caregivers being marginalized and overburdened by the health care system. Supporting programs that educate clinicians about the role of caregivers, their importance in the care process, and the challenges they face, and that provide strategies for incorporating them into the health care team can dramatically improve outcomes for caregivers and care recipients alike.
- Develop responsive and supportive programs for caregivers. The care system is fragmented and not designed to adapt to the individual needs of family caregivers and the family dynamics they operate within. The system rarely accounts for the limited bandwidth caregivers have because of the many demands they face in their roles. Funders can support initiatives and programs for family caregivers that are time-efficient, convenient, on-demand, and culturally sensitive. This extends to caregiver education, where traditional medical training approaches may not be the best approach. Grantmakers should consider supporting programs that adopt more modern learning pedagogies, such as flip classrooms, simulation centers, and online learning.
- Invest in “smart home” and remote care technologies. “Smart home” technology that addresses medical needs and functional limitations of older adults can potentially lighten caregiver workloads. Coupled with emerging care technologies like remote medication management and vitals monitoring, these advances can help address gaps in care and make virtual remote caregiving a reality. However, grantmakers are cautioned to also invest in evaluating the economic benefit of these technologies, which are still an emerging area of research. Funders should also ensure that a human-centered design approach is used to develop them.
- Support metrics, research, and data. Funders can support research efforts aimed at addressing the quality metrics gap. There are also many program and policy areas relating to family caregiving where grant support would help move the field, including care coordination and transition support, training caregivers for medical/nursing tasks, caregiver supportive technologies, dose interventions for caregivers, and the effects of interventions on caregiver health. Finally, while research and metrics remain a developing area, there is a great deal of program and model data that has yet to be examined in aggregate. Furthermore, there is no mechanism for interpreting the new data that is being collected as programs and technologies are implemented. Grantmakers could consider investing in efforts to collect and share data to reduce redundancy of efforts and address policy barriers to data collection (i.e., HIPPA and CARE Act signed consent requirements).
In addition to these recommendations, the grantmakers and experts attending this meeting suggest funders consider the recommendations outlined in the National Academies of Sciences, Engineering, and Medicine report, Families Caring for an Aging America.
Friss Feinberg, Lynn. Family Caregiving. Arlington, VA: Grantmakers In Aging, 2016. http://www.giaging.org/issues/family-caregiving
Fulmer, Terry. The John A. Hartford Foundation. “The Importance of Caregiving: A Funder’s Perspective.” Presentation at Grantmakers In Health-Grantmakers in Aging meeting, New York, New York, July 18, 2016.
Hunt, Gail. National Alliance for Caregiving. “Caregiving for Older Adults: The State of the Field.” Presentation at Grantmakers In Health-Grantmakers in Aging meeting, New York, New York, July 18, 2016.
Kelly, Kathy and Donna Wagner. Family Caregiver Alliance and College of Health and Social Sciences, New Mexico University. “Innovative Practices and Programs for Caregivers.” Presentation at Grantmakers In Health-Grantmakers in Aging meeting “Care for All: Supporting Older Adults, Family Caregivers, and the Home Health Care,” New York, New York, July 18, 2016.
Levine, Carol and Carol Rodat. United Hospital Fund and Paraprofessional Healthcare Institute. “Creating a Supportive System for Caregivers.” Presentation at Grantmakers In Health-Grantmakers in Aging meeting, New York, New York, July 18, 2016.
National Academies of Sciences, Engineering, and Medicine. Families Caring for an Aging America. Washington, DC: National Academies Press, 2016.
Reinhard, Susan, Carol Levine, and Sarah Samis. Home Alone: Family Caregivers Providing Complex Chronic Care. New York, NY: United Hospital Fund and AARP Public Policy Institute, October 2012. http://www.uhfnyc.org/publications/880853