Bridging the Family Care Gap

Bridging the Family Care Gap explores expected future shortages of family caregivers of older persons and identifies potential solutions. The book examines the sustainability and availability of care management models and whether they can be effectively scaled up to meet community needs. It identifies newly emerging policy initiatives at local, state, and federal levels. The book addresses the state of family caregiving science, dissemination and implementation of promising programs and supports, technological innovations, and other strategies to offset the family care gap. This edited volume also explores lay healthcare workers as guides, interpreters, and advocates in healthcare systems that provide continuity of contact for family caregivers.

• Details threats to family caregiving-sociodemographic, chronic disease, and socioeconomic challenges
• Presents solutions to the caregiving gap in a systematic, synthesized manner
• Addresses the intersection of family caregiving and technology
• Discusses chronic disease management to offset and reduce the need for family caregiving
• Describes models of caregiver support in work settings
• Reimagines the delivery of long-term services and supports with novel initiatives

• Language: English
• Publisher: Academic Press
• Release date: Jan 9, 2021
• ISBN: 9780128138991

Book preview

Bridging the Family Care Gap

First Edition

Joseph E. Gaugler

Division of Health Policy and Management, School of Public Health, University of Minnesota, Minneapolis, MN, United States

Table of Contents

Cover image

Title page

Copyright

Contributors

Foreword

Family caregiving on the precipice

Delving deeper: Key trends and their influence on family care for older persons

Family Caregiving in the New Normal

Section I: The contexts of the family care gap

Chapter 1: Public health perspectives on the family care gap

Abstract

Section I: Caregiving as a public health issue

Section II: A public health approach to addressing the family care gap: The Healthy Brain Initiative Road Map

Section III: Conclusion

Supplementary material

Chapter 2: Diverse, culturally rich approaches to family care in the United States

Abstract

Introduction

Definition of culture

How culture can impact caregiving

The need for cultural tailoring of caregiving programs

Informing culturally adapted programs/interventions

Examples of culturally tailored caregiving programs

Beyond cultural tailoring of interventions

Conclusion

Chapter 3: Caregiving in a rural context: Challenges and recommendations

Abstract

Introduction

Rural context

Caregiving in rural areas

Policy & programmatic considerations

Conclusion

Section II: Leveraging the past to inform the future

Chapter 4: A systematic review of interventions that reduce family caregiving time

Abstract

Present study

Method

Results

Discussion

Conclusion

Chapter 5: Recommendations for the future science of family caregiving services and supports: A synthesis of recent summits and national reports

Abstract

National efforts to guide the future of caregiving research

Section III: Getting the best evidence into the real world

Chapter 6: Implementing and sustaining family care programs in real-world settings: Barriers and facilitators

Abstract

Acknowledgments

Introduction

Organizing frameworks

Search procedures

Results

Discussion

Conclusion

Chapter 7: Unique models and initiatives that states are working on to close the family care gap

Abstract

Overview and purpose of interventions

Types of interventions/terminology associated with interventions

Current interventions to support caregivers

Challenges and successes with translation

Recommendations for closing the family care gap

Chapter 8: Update on the status of effective programs to help dementia family caregivers in the United States: Observations from the search for programs to include in Best Practice Caregiving

Abstract

Acknowledgments

How organizations and funders have learned about existing programs for dementia family caregivers

Inclusion criteria for programs in Best Practice Caregiving

Procedures we used to find and review programs for inclusion in Best Practice Caregiving

Seven observations about the current status of programs for dementia family caregivers in the United States

Two difficult issues that require more attention going forward

Conclusion

Section IV: Innovative solutions

Chapter 9: Driving change: Advancing policies to address the escalating complexities and costs of family care

Abstract

Supporting family caregivers providing complex care

Supporting family caregivers with workplace leave policies

Chapter 10: Developing a quality home care workforce to complement family caregivers and bridge the emerging care gap

Abstract

Overview of the home care workforce

The home care workforce

The home care workforce roles and responsibilities

Challenges to the development of a quality home care workforce

Affordability challenges

Opportunities for change

Long-term care financing

Conclusion

Chapter 11: Identifying, assessing, and supporting family caregivers in health and long-term care: Current progress and future opportunities

Abstract

Acknowledgments

The impact of demographic, chronic illness, and health system trends on family involvement in health care processes

Person- and family-centered care

Family caregiver assessment

Conclusion

Chapter 12: Technology-based solutions to address the family care gap challenge

Abstract

Telehealth systems

Smart homes

Conversational agents

Robotics

Implications of technology based solutions for family caregivers

Conclusion

Chapter 13: Leveraging volunteers to support dementia family caregivers: An innovative approach to care and support

Abstract

Background

Unique needs of ADRD caregivers

Volunteerism in the United States

Existing programs

Innovative strategies

Conclusion

Chapter 14: Health information technology and family caregiving: Policy initiatives

Abstract

The need for HIT in family caregiving

Early HIT policies

Legislation regarding the adoption and use of HIT

Policy outcomes on HIT adoption

Persisting challenges

Conclusion

Section V: Conclusion

Chapter 15: Supporting family care for older adults: Building a better bridge

Abstract

The family care gap imperative

Conclusion

Index

Copyright

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Contributors

Elena M. Andresen     School of Public Health and Executive Vice President and Provost, Oregon Health & Science University, Portland, OR, United States

Zachary G. Baker     Division of Health Policy and Management, School of Public Health, University of Minnesota, Minneapolis, MN, United States

David M. Bass     Benjamin Rose Institute on Aging, Center for Research & Education, Cleveland, OH, United States

Laura J. Bauer     Mattie J.T. Stepanek Foundation, Georgia Southwestern State University, Americus, GA, United States

Erin D. Bouldin     Public Health Program, Department of Health and Exercise Science, Appalachian State University, Boone, NC, United States

Rita B. Choula     AARP Public Policy Institute, Washington, DC, United States

George Demiris     School of Nursing, University of Pennsylvania, Philadelphia, PA, United States

Valerie J. Edwards     Alzheimer's Disease and Healthy Aging Program, Centers for Disease Control and Prevention, Atlanta, GA, United States

Lynn Friss Feinberg     AARP Public Policy Institute, Washington, DC, United States

Noelle L. Fields     School of Social Work, The University of Texas at Arlington, Arlington, TX, United States

Joseph E. Gaugler     Division of Health Policy and Management, School of Public Health, University of Minnesota, Minneapolis, MN, United States

Laura N. Gitlin     College of Nursing and Health Professions, Drexel University, Philadelphia, PA, United States

Carrie Henning-Smith     Rural Health Research Center, University of Minnesota, Minneapolis, MN, United States

Nancy Hodgson     School of Nursing, University of Pennsylvania, Philadelphia, PA, United States

Christine J. Jensen     Riverside Center for Excellence in Aging and Lifelong Health, Williamsburg, VA, United States

Eric Jutkowitz     Department of Health Services, Policy and Practice, School of Public Health, Brown University, Providence, RI, United States

Justin P. Kearley     Public Health Program, Department of Health and Exercise Science, Appalachian State University, Boone, NC, United States

Megan Lahr     Rural Health Research Center, University of Minnesota, Minneapolis, MN, United States

Katie Maslow     Gerontological Society of America, Washington, DC, United States

Lisa C. McGuire     Alzheimer's Disease and Healthy Aging Program, Centers for Disease Control and Prevention, Atlanta, GA, United States

Lauren L. Mitchell     School of Science & Health, Department of Psychology, Emmanuel College, Boston, MA, United States

Manka J. Nkimbeng     School of Public Health, University of Minnesota, Minneapolis, MN, United States

Lauren J. Parker     Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, United States

Nia Reed     Alzheimer's Disease and Healthy Aging Program, Centers for Disease Control and Prevention, Atlanta, GA, United States

Susan C. Reinhard     AARP Public Policy Institute, Washington, DC, United States

Julie H. Rentsch

Benjamin Rose Institute on Aging, Center for Research & Education, Cleveland

Public Health and Aging Consultant, Middleburg Heights, OH, United States

Catherine A. Riffin     Division of Geriatrics and Palliative Medicine, Weill Cornell Medical College, New York, NY, United States

Erin M. Roark     School of Social Work, The University of Texas at Arlington, Arlington, TX, United States

Nicole Ruggiano     School of Social Work, University of Alabama, Tuscaloosa, AL, United States

Robyn Stone     LeadingAge LTSS Center, University of Massachusetts Boston, Boston, MA, United States

Jennifer L. Wolff     Department of Health Policy and Management, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, United States

Ling Xu     School of Social Work, The University of Texas at Arlington, Arlington, TX, United States

Foreword

Richard Schulz, Distinguished Service Professor of Psychiatry, School of Medicine, Director Emeritus, University Center for Social and Urban Research, Director, Center for Caregiving Research, Policy and Training, Director, Geriatric Education Center of Pennsylvania, University of Pittsburgh, Pittsburgh, PA, United States

For anyone familiar with the National Academies of Sciences, Engineering and Medicine report on family caregiving, Families Caring for an Aging America (Schulz & Eden, 2016), or the previous book edited by Gaugler and Kane, Family Caregiving in the New Normal (2015), this is the sequel you’ve been waiting for. Both volumes are strong on identifying problems and challenges with existing caregiver practice and policy that make family caregiving unsustainable. The strength of this book is that it brings together eminent scientists, policy experts, and practitioners able to provide a detailed roadmap for supporting family caregivers now and in the future.

The underlying premise of Bridging the Family Care Gap is that existing strategies of supporting older adults and their families are inadequate and unsustainable and will worsen as the need for care among older adults increases and the availability of family members providing care decreases. The availability of family caregivers in the future is threatened by the higher rates of childlessness among baby boomers, smaller and more geographically dispersed families, the increase in nontraditional family structures, and increasing participation of women in the labor force. At the same time, advances in medicine that save and extend lives and the changes in healthcare practices increase the duration, complexity, and technical difficulty of care required by individuals with serious illness and disability. Family caregivers will continue to play a vital role in existing healthcare and long-term services and supports (LTSS) systems. Their willingness to provide care and their effectiveness in doing so will depend on fundamental changes in the extent to which we formally recognize them as key contributors to the health of their relatives, integrate them into formal provider systems, and support them to do their job.

Families Caring for an Aging America and Family Caregiving in the New Normal identify a litany of structural and process barriers that impede effective partnerships between family caregivers and providers of health care and LTSS. Family caregivers are often marginalized or ignored by providers and systems of care; we fail to address the needs of diverse older populations; we lack an adequately trained workforce; payment rules discourage providers from spending time to communicate with caregivers; privacy regulations are misinterpreted and inappropriately applied; and health insurance models are typically limited and oriented to individual coverage.

The National Academies of Sciences, Engineering, and Medicine report on family caregiving calls for transformation in the policies and practices affecting the role of families in the support and care of older adults, stating that today's emphasis on person-centered care needs to evolve into a focus on person- and family-centered care, where family-centered care is defined as care that is centered in collaborative partnerships among patients, their defined family, and providers of care.

These broad stroke recommendations, although generally endorsed by family members and service providers, have seen limited implementation in part because we lack a clear roadmap for how to do this. Bridging the Family Care Gap aims to draw a map for us. The eminent contributors to this book provide multiple complementary strategies for navigating the future. They acknowledge the diverse contexts within which caregiving occurs; show us how to leverage existing caregiving science and evidence to inform real-world implementation, and provide a broad array of specific strategies for addressing key caregiving challenges.

We are in the midst of the COVID-19 pandemic impacting individuals of all ages around the globe. Given its disproportionate impact on older adults and their caregivers, the recommendations and solutions provided by this book should be front and center.

References

Gaugler J.E., Kane R.L.Family caregiving in the new normal. San Diego, CA: Elsevier; 2015.

Schulz R., Eden J., eds.Families caring for an aging America. Washington, DC: The National Academies Press; 2016.

Family caregiving on the precipice

Joseph E. Gaugler, Division of Health Policy and Management, School of Public Health, University of Minnesota, Minneapolis, MN, United States

Abstract

The evolution of residential and community-based long-term care services, the graying of the American population, sociodemographic changes in labor force participation and family structures, and radical changes in the delivery of healthcare have dramatically changed the availability and provision of family care to older persons. However, families remain the cornerstone of a fragmented, inconsistent long-term care system. Can we continue to rely on families to assume this crucial role? There is a tightening family care gap in terms of the ratio of family caregivers available to provide help to older adults in need. This edited volume, Bridging the Family Care Gap, focuses on available and potential solutions to sustain family caregivers now and in the future via the following sections: (I) The Contexts of the Family Care Gap; (II) Leveraging the Past to Inform the Future; (III) Getting the Best Evidence into the Real World; and (IV) Innovative Solutions. Although no one solution will ever suffice for the incredibly complex, heterogeneous nature of family care in the United States, Bridging the Family Care Gap strives to offer a more cohesive set of solutions to supplement, if not substitute for, the extensive help that families provide to older adults in need in the United States.

Keywords

Caregiving; Long-term care; Policy; Future; Long-term services and supports; Informal; Family; Policy

There is a persistent belief in the United States that families are not as close as they used to be. When it came to caring for older relatives in need, families provided the assistance required with little complaint and no need for help (please note that here and throughout this volume, family caregivers refer to unpaid care providers that are kin, friends, or neighbors of older care recipients). Historical analyses of long-term care in the United States, however, paint a very different picture. Before the availability of widespread public programs that offered new options for long-term care provision both at home and in other settings (Medicare, Medicaid, Social Security, the Older Americans Act), families and older persons had few options at their disposal outside of kin. Formal community-based or residential long-term care was either nonexistent or bleak prior to the middle of the 20th century (see Gaugler, 2016). As the United States evolved from an agrarian to an industrial society, several historical trends converged to make the landscape of family care for older adults far different than the mythical, halcyon days of a preindustrial America. For example, the evolution of residential and community-based long-term care services, the graying of the American population, sociodemographic changes in labor force participation and family structures, and radical changes in the delivery of healthcare have dramatically changed the availability and form of various types of long-term care for older persons.

There is little doubt that families want, and do, care for their elderly relatives in need of help, but the notion that this is just something families should and are supposed to do is embedded in much of the long-term care policy framework of the United States (if there is one). Families are often left on their own to navigate an increasingly complex and bureaucratic healthcare system on behalf of their relatives, while at the same time providing the bulk of care at-home. Much of this care is more technical than ever before due to public and private insurance payers’ emphases on truncated hospital discharge (where persons with more complex care needs are sent home) and cost containment.

In the face of this increasingly complex family caregiving context, families often struggle with where to turn for support. These challenges are compounded if the caregiver is balancing multiple life responsibilities (work, child rearing), does not live with the relative, and the health condition of the relative is chronic and requires ongoing attention (Feinberg & Levine, 2016). There is little doubt that for many families their caregiving situation is complex and challenging; it has been this way for some time as the concurrent trends of an aging population and greater chronic disease prevalence at home affect families who must often shoulder the majority of care.

However, there is change in the air when it comes to family caregiving. For those of us who have either dedicated our professional careers to the study of family care for older adults, and/or spent a large part of our lives providing such care to a relative/acquaintance, the past 20 years have yielded a number of significant developments. Before the mid-1990s, there were no federal programs in existence to directly support family caregivers, and the level of supportive services available for family caregivers of older adults varied widely by state. Those states that had developed family caregiving services became the basis for the National Family Caregiver Support Program, which was initiated in 2000 (Gibson Hunt, 2016). Since then, family caregiving has emerged as an issue of national importance and has garnered public attention. In addition to the National Family Caregiver Support program, other federal efforts to support family caregivers have emerged including the Lifespan Respite Program and the Veterans Caregiver Support Program, although the reach of these programs to family caregivers in need is questionable (Doty & Spillman, 2015). While state-level support still varies, Area Agencies on Aging as well as Aging Disability Resource Centers have expanded their services and reach to include family caregiving support. Employers have begun to identify family caregiving issues as important (e.g., the ReACT coalition; see https://respectcaregivers.org/). Family caregiving has also evolved as a core research priority in various national agencies, including the National Institute on Aging (https://aspe.hhs.gov/national-research-summit-care-services-and-supports-persons-dementia-and-their-caregivers), the National Cancer Institute (Kent et al., 2016), and the National Institute of Nursing Research as well as in the various recommendations outlined in the National Alzheimer's Plan (https://aspe.hhs.gov/national-plans-address-alzheimers-disease) (see chapter by Mitchell and Gaugler in this volume).

The essential roles that family caregivers occupy when delivering ongoing, complex, and intensive help to older persons in the United States with one or more chronic conditions are now acknowledged. The calls to recognize the primacy of family caregivers in long-term care have culminated in reports in prestigious academic journals, federal organizations that shape policy and funding decisions, and innumerable media reports (e.g., Adelman, Tmanova, Delgado, Dion, & Lachs, 2014; Schulz & Eden, 2016). In some ways, family caregiving's time has come as a pivotal public health and social issue facing our society.

When we now think of long-term care in the United States, we are not simply referring to nursing homes or other types of formal/paid services. We also think about, or should think about, families. Indeed, 83% of all older adults in need receive help from family members (Gitlin & Schulz, 2012). Moreover, the importance of family caregiving is embedded in current definitions of long-term care. Long-term care is understood as an array of informal and formal community-based and residential services offered to those with chronic conditions over time (Gaugler, 2016, p. 422). Depending on the data source, anywhere from 21 million to over 50 million family members provide care to an adult relative in need. To place an economic value on this care: if one were to replace family caregivers of persons with Alzheimer's disease or a related dementia with a home health aide alone, the value of dementia family care would be 244 billion dollars, which is 11 times the annual revenue of McDonald's and almost half the sales of Walmart in 2019 (The Alzheimer's Association, 2020).

More recent attention from advocacy organizations, researchers, and now various funding agencies aside, family caregiving remains largely ignored within the larger framework of healthcare policy, particularly at the federal level. Instead, family caregiving is viewed more as a personal matter and private responsibility (one often borne by women) (Feinberg & Levine, 2016), although as indicated above the shared value of family care for older persons means that if anything families are the cornerstone of the long-term care system in the United States. This has led to a fragmented, inconsistent long-term care system (also called long-term services and supports, or LTSS) that does not effectively nor comprehensively support families in their essential role of providing help to older relatives who need it.

However, can we continue to rely on families to assume this crucial role?

As Robyn Stone, PhD argued in our edited book, Family Caregiving in the New Normal (Gaugler & Kane, 2015a; Stone, 2015), there are a number of trends that suggest we cannot. A widely cited statistic and figure published by the American Association of Retired Persons (AARP) illustrates an increasingly tightening family care gap in terms of the ratio of family caregivers available to provide help to older adults in need (from 7:1 in 2010 to 4:1 in 2030; (Redfoot, Feinberg, & Houser, 2013). A number of trends help to explain the impending family care gap, including sociodemographic (a declining fertility rate; delayed marriage among younger cohorts; an increase dual worker households; geographic mobility; more diverse family structures), health (the aging of the Baby Boom cohort as well as the greater number of persons aged 85 and older along with the concurrent increase in chronic disease prevalence among these individuals); and structural (the ongoing shortages in the geriatric care workforce) (Gaugler & Kane, 2015a). Such trends were also highlighted in a chapter from the seminal 2016 report from the National Academies of Sciences, Engineering, and Medicine (Schulz & Eden, 2016).

Delving deeper: Key trends and their influence on family care for older persons

As gerontologists and others have long noted, the baby boomer population is getting older, such that by 2030 over 20% of the US population will be 65 years of age and over (Ortman, Velkoff, & Hogan, 2014). Perhaps more importantly, older persons are living much longer than in the past; in 2030 approximately 19 million older adults in the United States will be over the age of 80. This number will increase to a staggering 30 million + in 2050. Given that age is a consistent, and in some cases the most potent, predictor of chronic disease prevalence as well as co-occurring conditions (Bayliss et al., 2014; Boyd & Fortin, 2010; Fortin, Stewart, Poitras, Almirall, & Maddocks, 2012; Marengoni et al., 2011; Northwood, Ploeg, Markle-Reid, & Sherifali, 2018), the tightening family caregiver/older adult ratio is of great concern.

The graying of the US population is also becoming more diverse than at any time in the United States’ history. For example, the number of Hispanic older adults will have tripled from 2000 to 2030 to include 8 million individuals; this number will exceed the number of older African Americans by 2030 (Frey, 2014). Similarly, non-Hispanic Asian older adults will more than double in number over the same time period to 3.5 million. The rapidly diversifying aging US population will likely influence how family caregiving is perceived and delivered, as well as how formal/paid LTSS are utilized. As LTSS strive to become more person-centered (supporting the rights, values, and beliefs of the individual; involving them and providing unconditional positive regard; entering their world and assuming that there is meaning in all behavior, even if it is difficult to interpret; maximizing each person's potential; and sharing decision making; see Edvardsson, Winblad, & Sandman, 2008) if not family-centered (an approach to the planning and delivery of care across settings and time that is centered in collaborative partnerships among individuals, their defined family, and providers of care; National Quality Forum, 2014), how the preferences and values of black, indigenous, and older persons of color as well as their families will change the landscape of family caregiving as well as LTSS remains unknown.

The changing structure of the American family over the past 60 years has also reduced the number of individuals available to help aging relatives. A decreasing birthrate, greater divorce rates, delayed marriage, and an increase in combined/less traditional/geographically dispersed family structures have all contributed to the family care gap. For example, increasing labor force participation of women may reduce the number of adult daughters as potential caregivers. The second most common kin caregiver-care recipient relationship is a wife of an aging husband with a health need, but the increased divorce rate apparent over the past half-century may further influence family caregiver availability in the near future if it has not done so already (Schulz & Eden, 2016). Potential reduced feelings of filial or kin obligation to provide care in less traditional family structures pose further threats to family caregiver availability for older Americans in need. Similarly, the number of Americans living in multigenerational households is increasing from 17% of the US population (51.5 million people) in 2009 to 20% in 2016 (64 million people). Although this increase is due to the rise in the number of Asian and Hispanic families in the United States (among whom multigenerational households are more common) as well as the number of millennials (ages 25–29) living in multigenerational households, 24% of those aged 55 to 64 and 21% of those over the age of 65 are currently living in multigenerational households (Ramirez, 2018).

Although women's increasing role in the workforce is suggested as a possible threat to the sustainability of family caregiving, one could argue that the idyllic one-wage earner household that could support family caregiving of older relatives was never truly the norm, particularly among families of lower socioeconomic status (Abel, 1995). Nonetheless, a significant majority of family caregivers in the United States are currently employed, and thus are experiencing increasing pressures to balance work demands with family caregiving (although, again, the empirical associations between employment and caregiver distress are more complicated than they appear; see Gaugler et al., 2018; Stephens & Franks, 2009). In particular, women of the ages of 50–64 are more likely to be employed; it is this segment of the population that is also most likely to be in family caregiving roles (Feinberg & Levine, 2016). There is a flipside to the focus on women as family caregivers; 40% of family caregivers are men (National Alliance for Caregiving & American Association of Retired Persons, 2020), and among all caregivers who provide more than 21 hours of help to a relative in need per week, 39% are men. These gender differences, and how current LTSS are delivered and tailored for men remain an important gap in both research and practice.

Healthcare has transformed in the past century with the advancement and refinement of pharmacological treatments, the massive expansion of the American hospital system following World War II, technological achievements, and the oversized influence of public and private healthcare insurers that dictate how healthcare is organized and delivered (Feinberg & Levine, 2016). Although the availability of care options has expanded greatly, whether they are accessible is arguable; moreover, the focus on acute care at the expense of effective chronic disease care (the latter being the context that family caregivers most often find themselves in) likely drives costs upward in the American healthcare system (Gaugler, 2016; Kane, Priester, & Totten, 2005; Lubkin & Larsen, 2013). As Susan Reinhard, Lynn Friss Feinberg, Carol Levine, and others at the American Association of Retired Persons have forcefully argued, such changes have resulted in an oft-unrecognized trend: an elevated expectation that families will provide more and more complex care at home. This often occurs in the shadow of expedited discharge from hospitals or other care settings to reduce costs and the general lack of community-based services and supports that are accessible or affordable (Feinberg & Levine, 2016; Reinhard & Feinberg, 2015). At present, 58% family caregivers are providing technical care requiring considerable skills, including medication management, wound care, and technology use to ensure care regimens are carried out as prescribed (National Alliance for Caregiving & American Association of Retired Persons, 2020), and they often lack the information or resources necessary to manage complex medication regimens (Alsaeed, Jamieson, Gul, & Smith, 2016; Gillespie, Mullan, & Harrison, 2014). Increasingly complex care tasks, on top of traditional family care responsibilities (e.g., basic and instrumental activity of daily living assistance), are placing further strains on the family caregiving system in the United States.

A another complicating factor is that health care providers tend not to acknowledge or understand families’ provision of intensive, long-lasting care at home, nor how to effectively incorporate family caregivers into effective chronic disease care regimens. Health care providers often do not assess family caregivers in terms of their knowledge, their understanding of what care tasks they are being asked to perform as part of their relative's regimen, or whether family members are even able to provide such assistance (Adelman et al., 2014; Wolff, Feder, & Schulz, 2016; Wolff & Jacobs, 2015). Similarly, family caregivers may be uncomfortable asking for such assistance from providers, further raising the specter of possible errors in care. Other barriers impede the inclusion of family caregivers in effective care management; for example, the emphasis on privacy of information often means that family caregivers cannot effectively access healthcare data that can be used to coordinate care across specialty providers and systems (Wolff et al., 2016). The type and intensity of healthcare delivery is driven by reimbursement, and since engaging with family caregivers is often not reimbursed there is no financial incentive for healthcare systems or providers to create family-engaged delivery models. Thus, family caregivers are often at the margins when it comes to how healthcare is delivered, creating a silo between the formal care provider system and the family care context.

Clearly, family caregiving has changed in the past few decades due to the various trends summarized above, but does this tell us the whole picture? A very interesting study by Jennifer Wolff and colleagues attempted to answer that question by using nationally representative data profiles of family caregivers over the past 20 years (e.g., 1999, 2004, 2011, and 2015) (Wolff et al., 2018). Older care recipients who received help from family members were generally younger, more diverse, and better educated by 2015. Although the findings related to education and diversity are perhaps not that surprising as they match overall demographic trends, the fact that care recipients are younger than in the past suggests the possibility that family caregivers are providing assistance earlier and thus may have to provide assistance longer than in previous cohorts. Over 60% of caregivers in 2014 helped a care recipient for more than 4 years when compared to 45% in 1999. Several aspects of family caregiving have remained similar: the overwhelming majority of family caregivers are either spouses or adult children, and on average caregivers provided assistance for 30 hours or more per week. One interesting trend occurred among spouse caregivers; these individuals were twice as likely to be employed in 2014 than 1999, provided fewer hours of care, and were less likely to indicate emotional, physical, or financial challenges due to caregiving. Prior research has found that employment, particularly full-time work, is a potential buffer to negative caregiving outcomes and may explain this finding (see Gaugler et al., 2018). Among adult children, time spent caregiving and care-related challenges appeared largely unchanged in the past two decades. Family caregivers appeared more likely to utilize respite care since 1999 (almost doubling from 8.5% to 15.7%), suggesting either greater availability of these services, or greater awareness/willingness among family members to access community based LTSS. Overall, trends suggest that families have been able to manage their care situations more effectively than in the past to some extent; this occurred within specific disease contexts as well, such as dementia. Although the hours of help provided by dementia caregivers increased from 45 to 48 hours per week on average from 1999 to 2015 (and decreased for caregivers of persons without dementia from 34 to 24 hours in the same time period), several more positive trends for dementia caregivers were apparent. Over the 1999–2015 time period, dementia caregivers experienced decreased physical (30%–17%) and financial (22%–9%) challenges. As among caregivers overall, dementia caregivers doubled their use of respite care from 1999 to 2015 (13%–27%) (The Alzheimer's Association, 2020; Wolff et al., 2018).

Family Caregiving in the New Normal

In 2015, my departed colleague Robert L. Kane, MD and I coedited a book called Family Caregiving in the New Normal (Gaugler & Kane, 2015a, 2015b). Our goal with Family Caregiving in the New Normal was to specify the trends and factors that threaten the sustainability of family care for older adults in the United States. In many ways, long-term care policy in the United States is largely based on a heavy reliance on family caregivers, and operates under the assumption that the status quo will continue indefinitely. There is a clear economic incentive to do so; without families, the long-term care system in the United States would likely collapse given the enormous burden on taxpayers or other entities that would have to substitute home-based or even residential long-term care for lost family time.

With these challenges in mind, a core objective of Family Caregiving in the New Normal was to not simply highlight trends, but also describe emerging care models, technological innovations, and information resources that could help navigate the perfect storm that is gathering to disrupt family caregiving in the United States (Gaugler & Kane, 2015b). Dr. Kane and I also wanted to implore a sense of urgency, given the impending family care gap. Due to the various innovations in research, practice, and to some extent policies related to family caregiving since the 1970s, Family Caregiving in the New Normal sought to provide a road map to address the challenges facing how we provide family care to older persons.

In reflecting on Family Caregiving in the New Normal, the strengths of the book rest in its effective summary of challenges, including policy roadblocks that make the current status quo of our over-reliance on family caregivers as unsustainable. In addition to the various trends highlighted above, political dynamics at the various levels of government have influenced affordability and accessibility of community-based services to help support families. The aftershocks of the Great Recession, coupled with the massive changes to how healthcare will be delivered and paid for, will further influence how family caregiving is provided in the United States (e.g., Doty & Spillman, 2015; Lipson, 2015; with more changes likely due to the COVID-19 pandemic). Increasing duration and prevalence of chronic illnesses among both older adults and younger populations (e.g., diabetes) may also intensify the pressures family caregivers face in the future. Since it was published, Family Caregiving in the New Normal and its specific chapters have been cited in several important reports, including the landmark 2016 report from the National Academies of Sciences, Engineering, and Medicine, Families Caring for an Aging America as well as the annual Alzheimer's Disease Facts and Figures report disseminated by the Alzheimer's Association.

My own assessment of Family Caregiving in the New Normal is that its recommendations for how to address the various threats and challenges to family caregiving sustainability were piecemeal. Although the chapters in the latter portion of the book were excellent and timely, I fault myself as Editor for not providing a more cohesive, integrated set of solutions to address the family caregiving gap. Perhaps such self-flagellation is unnecessary, as there likely is no integrated solution. Nonetheless, the goal of Bridging the Family Care Gap is to attempt to complement and build upon Family Caregiving in the New Normal. More specifically, Bridging the Family Care Gap focuses on available or potential solutions to support and sustain family caregivers now and in the future.

Section I: The contexts of the family care gap

The case will be made that the family care gap, and how we approach family caregiving in the future, is a public health imperative. In addition, the increasing diversification of the United States in terms of race and ethnicity requires greater attention when considering the family care gap. The chapters in this section examine innovative and novel family caregiving approaches through a public health lens. An overarching emphasis of these chapters is that our perspectives should be shaped not only by the challenges of family caregiving in various communities, but also by the important, innovative approaches of these communities, many of which can likely benefit all family caregivers.

Section II: Leveraging the past to inform the future

The science of family caregiving has evolved considerably over the past four decades. However, is there wisdom in this research that can effectively address the family care gap? The chapters in this section review existing interventions (or, programs, services, or therapies designed to benefit family caregivers and/or older adult with health needs) to ascertain whether particular strategies actually modify perhaps the most critical outcome when considering the family care gap: caregiving time. In addition, the chapters in this section synthesize the multiple national summits and reports that have emerged over the past several years (see above) to highlight research recommendations that would help to bridge the family care gap.

Section III: Getting the best evidence into the real world

The next section of Bridging the Family Care Gap addresses a core concern that has long impeded the ability of families to sustain support for relatives in ways that potentially alleviate the negative health ramifications of caregiving: namely, the uptake of evidence-based solutions that address their everyday, real-world concerns. Each of the chapters in this section summarizes key models, efforts, and emerging innovations that have or could truncate the traditional, unnecessarily long timeline from research to real-world dissemination and implementation.

Section IV: Innovative solutions

This section is in some ways an update and extension of those that constituted a similar section in Family Caregiving in the New Normal, but with a more focused emphasis on the impending family care gap. Although there is little doubt about the potential of various technologies to support family caregivers, what can we say about whether these technologies work or not, and what steps are needed to achieve such knowledge? In addition, although bridging the family care gap will no doubt involve strengthening, expanding, and improving supports to a dwindling number of available family caregivers, alternative sources of support (e.g., volunteers) and strengthening the healthcare workforce in innovative ways are likely required and are the respective foci of chapters in this section.

Taken as a whole, these sections and chapters will attempt to provide a series of solutions to bridge the impending family caregiving gap in the United States. Although no one solution will ever suffice for the incredibly complex, heterogeneous nature of family care in the United States, it is my hope that Bridging the Family Care Gap can perhaps offer a more cohesive set of solutions to effectively supplement, if not substitute for, the extensive help that families provide to older adults in need in the United States.

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Section I

The contexts of the family care gap

Chapter 1: Public health perspectives on the family care gap

Erin D. Bouldina; Elena M. Andresenb; Valerie J. Edwardsc; Justin P. Kearleya; Nia Reedc; Lisa C. McGuirec    a Public Health Program, Department of Health and Exercise Science, Appalachian State University, Boone, NC, United States

b School of Public Health and Executive Vice President and Provost, Oregon Health & Science University, Portland, OR, United States

c Alzheimer's Disease and Healthy Aging Program, Centers for Disease Control and Prevention, Atlanta, GA, United States

Abstract

Caregivers provide a critical source of care for people living with disabilities and chronic conditions. They improve health outcomes among care recipients while risking negative health consequences themselves. Nevertheless, the need for more caregivers is substantial. Therefore, caregiving is a public health concern. Public health seeks to improve the health of populations in an equitable way. This chapter illustrates a public health approach to supporting caregivers of people with dementia using the Healthy Brain Initiative: State and Local Public Health Partnerships to Address Dementia, the 2018–2023 Road Map. It is framed using essential public health services and identifies 25 strategies for public health action to support caregivers. The Road Map could serve as a template for supporting caregivers more broadly. Addressing the anticipated family care gap requires that public health systems collaborate to collect data and equitably implement evidence-based policies and programs that support people providing care in their communities.

Keywords

Public health; Surveillance; Caregiving; Aging; Disability; Population health; Evidence-based interventions; Policy development

As described in this chapter, the family care gap refers to the anticipated shortfall between the number of people who will need care or assistance because of chronic conditions or disability and the number of family members and friends in the community available to provide that care. A variety of potential solutions to the family care gap are presented in later chapters of this book. In the current chapter, we detail the public health perspective on caregiving and strategies to reduce the impending family care gap. Subsequently, we refer to many of the individual approaches described in other chapters, as they are important components of a comprehensive public health strategy.

This chapter explains why caregiving is a public health issue and presents a framework for considering caregiving from a public health perspective. We discuss relevant aspects of public health research and practice related to aging and disability and how these inform public health efforts to improve the health of caregivers and care recipients. Next, we provide potential solutions to the family care gap using the Healthy Brain Initiative: State and Local Public Health Partnerships to Address Dementia, the 2018–2023 Road Map and the Healthy Brain Initiative: The Road Map for Indian Country as examples of how to employ a systematic public health approach to support caregivers. Finally, we include examples of groups and organizations that have already taken steps to improve the health and quality of life of caregivers using the approaches suggested in the Healthy Brain Initiative Road Map series.

Section I: Caregiving as a public health issue

The public health perspective

Public health is a broad and multidisciplinary field that is concerned with improving the health of groups of people—populations—in an equitable way and to assure that all members of the population experience benefits (CDC Foundation, n.d.; Institute of Medicine (US), 1988,2002). More specifically, public health efforts seek to eliminate health disparities, which are potentially preventable systematic differences in health between groups of people based on a number of sociodemographic characteristics or the amount of power they have in their communities (Braveman et al., 2011). Public health leaders not only consider vulnerable populations who encounter health disparities (e.g., low socioeconomic status/SES, women, Hispanics, African Americans, and American Indians/Alaska Natives) but utilize best practices in an effort to minimize the gap between those inequalities. Public health efforts are typically based on the social-ecological framework, which illustrates the multiple levels of influence on health (Fig. 1) (Centers for Disease Control and Prevention, 2019a; Institute of Medicine (US), 2002). This framework highlights the interdependence of individual, interpersonal, organizational, community, and societal factors that impact people's health. An implication of the social-ecological framework is that efforts aimed only at changing individual behaviors are unlikely to be successful in improving population health, as they are one component of the complex array of factors that influence health (e.g., SES, race/ethnicity, gender, and sexuality).

Fig. 1 Social-ecological framework.

Public health complements healthcare received in settings like hospitals and rehabilitation facilities and sometimes provides such care. For example, many local health departments offer vaccinations and provide nutrition services and some provide more comprehensive prenatal and preventive or primary care, e.g., as federally qualified health centers (Institute of Medicine (US), 2012a,2012b). Public health also includes efforts to combat disease or stop injury from occurring by assuring safe environments; providing clean air, food, and water; and assuring access to care and programs. Public health classifications are oftentimes incorrectly limited to specific diseases or health exposures. However, any condition, exposure, event, or experience that negatively impacts health or quality of life at a population level is a public health issue.

As described in this chapter, caregivers provide a vital source of community-based care for older adults and people with disabilities. They help with a range of tasks that might include shopping, paying bills,