Winter 2003-04
Introduction

Family Caregiving:
Current Challenges for a Time-Honored Practice

By Carol Levine, guest editor

The last issue of Generations devoted to caregiving was published in 1985, not only in another century but, it sometimes seems, in another world. In the meantime, of course, articles relating to family caregiving have been published in other theme issues, so it is not that this journal has ignored family caregiving.

Nevertheless, this issue of Generations takes a major step forward in revisiting some of the conventional wisdom of the past few decades and in presenting a more up-to-date view of current practices and policies. There is much to be learned from past scholarship and experience, but one must always ask: How does this apply to the challenges that family caregivers face today? And what do we still need to learn and put into practice?

A BROADER VIEW

To understand family caregiving for older adults today, it is important to take a broad view of the types of physical and cognitive problems that create the need for assistance. Much of the early literature on caregiving (and much of it today) focuses on Alzheimer's disease and other dementias, which affect an estimated 4 million people. Dementia caregivers struggle with particularly difficult responsibilities and wrenching losses. As the population over the age of 85 increases, dementia will become more prevalent. Still, in terms of the health problems of older people, other conditions are far more prevalent and often more disabling. Cardiovascular diseases and stroke are the most common cause of death in the United States, and the American Heart Association estimates that 58 million Americans have some form of cardiovascular disease. Cancer is the second most common cause of death. Diabetes affects an estimated 17 million Americans, including 13 percent of African Americans. Diabetes can lead to heart disease, stroke, blindness, and amputation of limbs. Arthritis, while not a fatal disease, affects 60 percent of people over 65 and is the leading cause of disability among U.S. adults. Of course, people with dementias also may have medical conditions that require caregiver vigilance.

In an attempt to avoid the "medical model," understood as physician-controlled, body-part-oriented, and technologically driven care, many early practitioners and researchers focused on the social, relational, and emotional aspects of family caregiving. An emphasis on the whole person and the care recipient-caregiver relationship is critical, but this focus should not overshadow the reality that many older adults have serious medical problems that frame and color the caregiving experience.

A broader view of who takes on the role of family caregiver is also necessary. Caregivers are predominantly wives and daughters or daughters-in-law, but more and more men are becoming involved through necessity or choice. Caregivers are predominantly middle-aged or elderly themselves, but people of all ages, including teenagers and young adults, may find themselves in caregiving roles. Most caregivers are related by blood or marriage, but domestic partners, friends, and neighbors are also caregivers. The majority of caregivers are employed. All these characteristics make a difference, and even the "typical" caregiver may differ significantly from others in that category. Surveys and research studies present a panorama, not individual portraits.

Perhaps the most far-reaching change in the past few decades has occurred outside the family. The same advances in healthcare that have allowed people to survive infectious diseases, trauma, and chronic illness have led to their long-term disabilities. Cost containment in all phases of healthcare has drastically shortened hospital lengths of stay. According to the Centers for Disease Control and Prevention, the average hospital stay for people 65 and older in 2001 was 5.8 days, or less than half the 1970 figure (12.6 days). Patients today are routinely discharged home with the need for continued medical care. A burgeoning homecare technology industry is positioned to turn a home into a hospital. Medication regimens are now complex, expensive, and require sophisticated monitoring.

While families have been taking on extra responsibilities and costs, the amount of support available to them has been diminishing. After a period of explosive growth in the 1990s, Medicare-funded home healthcare has been placed under more restrictive prospective payment reimbursement rules. State budgets are also under severe strain, limiting Medicaid benefits. Despite their numbers (an estimated 25 million) and their contribution to the healthcare economy ($257 billion in 2000), family caregivers and their advocates have not yet become the powerful political force that is needed to bring about relief, respite, and reform. The federally funded National Family Caregiver Support program, described in this issue, is a first step toward that goal.

Finally, family caregiving is beginning to be seen as a global issue. Every country in the developed and developing worlds has to adapt to aging populations, record numbers of women in the labor force, and scarce resources. The World Health Organization and other international bodies have begun to address this problem. Here in the United States, family caregiver researchers and practitioners are beginning to make connections with their counterparts in other countries. In this issue, for example, there are three articles by Canadian, British, and Israeli coauthors that are pertinent to the American scene but also have an international dimension.

RESEARCH, PRACTICE, AND POLICY TODAY

The articles in this issue, written by experts in their fields, address these and other current challenges from a variety of perspectives. The articles fall into three broad categories: research, practice, and policy. The issue begins with three articles that address research findings and assumptions from both a historical and a current perspective. Based on in-depth interviews with thirteen pioneers in caregiving research, Marla Berg-Weger and Susan S. Tebb provide insights into the history, methodological issues, and future directions for the field. Practitioners need data from intervention research to develop individual, group, and community services that address the range of caregivers and caregiving situations.

The next article revisits the measures universally used to describe and analyze family caregiving-Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs). Carol Levine, Lynn Friss Feinberg, Susan Reinhard, Steven Albert, and Andrea Hart review the history of these measures, originally designed to apply to older adults, not their caregivers. They then compare these measures against the reality of family caregiving, as described in the literature, and propose a broader scheme to encompass the many responsibilities of family caregivers that ADLs and IADLs do not capture. The following article, by Lynn Friss Feinberg, takes this analysis one step further by describing the state of the art of caregiver assessment tools. She reports an array of instruments but no consistency in their use. Further efforts are essential to incorporate the caregiver's perspective in these assessments and to achieve a concensus on the most appropriate instruments for specific purposes.

Four articles discuss issues that arise in practitioners' interactions with family caregivers. The first, by Judith Dobrof and Helen Ebenstein, addresses a prior question: Why don't more caregivers self-identify and take advantage of the services that are available? Program planners and clinicians are often frustrated by family caregivers' reluctance to attend support groups or workshops, to "cross the threshold," as Beth McLeod puts it, taking on a new and often frightening role. Dobrof finds many reasons for this lack of self-identification. She describes a program developed at Mount Sinai Hospital in New York that is working to counter this resistance.

The second article in this section deals with aging and caregiving in ethnically diverse families. From a Quebecois perspective Nancy Guberman and Pierre Maheu acknowledge the importance of attending to specific cultural norms but stress the universality of caregiving experiences. Based on their studies of majority (French-speaking) and minority families (Chinese, Haitian, and Italian), the authors urge researchers and practitioners to develop approaches that place cultural factors within a larger sociopolitical and economic framework. Ethnicity is one factor among many that determines a particular family caregiver's needs.

Kenneth Doka next turns to one of the potential rewards of caregiving-an enhanced sense of spirituality. Distinguishing spirituality from religious belief or practices, Doka sees a caregiver's search for meaning and transcendence as a positive outcome. However, he notes that not all caregivers experience this sense of accomplishment and that insensitive religious platitudes can also add to caregivers' burdens.

Moving from the spiritual to the eminently practical, Marshall B. Kapp outlines family caregivers' legal concerns, including obligations to provide care, conditions under which neglect or abuse may be charged, decision-making authority, confidentiality, and other issues. The information in his article will be a helpful guide not only to family caregivers but also to practitioners who counsel them.

The next series of four articles addresses public policy starting from the global perspective. Based on their work at the World Health Organization, Miriam Hirschfeld and Daniel Wikler call for a space for ethical reflection in policy making around long-term care and family caregiving. Governments must take seriously questions of justice in allocating resources for long-term care and face squarely the gender inequities that have defined family caregiving everywhere.

In the United States and the United Kingdom, family-caregiver advocates have become more effective and forceful in the past few decades. While the basic systems of healthcare and social services are different, the challenges are similar. Anne Montgomery and her British colleague, Emily Holzhausen, present a revealing description of the paths each country has taken. While the U.K. has extensive family caregiver legislation unprecedented in the United States, services are still inadequate for the need.

Turning to domestic policy in the U.S., Judith A. Riggs urges family caregiver advocates to adopt a broad agenda for the future. While programs aimed at caregivers should be expanded and improved, a fundamental change in healthcare and long-term-care policy, particularly in regard to Medicare, must be the ultimate goal. The final article in this section takes up a specific policy question that has been discussed in this journal before: paying family caregivers. Utilizing the recent experiences of the federal Cash and Counseling Demonstration and Ohio's program for paying caregivers, Suzanne R. Kunkel, Robert A. Applebaum, and Ian M. Nelson find encouraging results. In the face of a growing shortage of direct-care workers, and budget shortages, this option will undoubtedly be even more attractive to public agencies.

The final section of this issue reports briefly on four innovative programs. Ernestine Williams and Pam Barton describe a culturally sensitive support-group program for assisting African American. Recognizing that family caregivers' health is often affected, the national Area Agencies on Aging created a program called "Making the Link: Connecting Caregivers with Services through Physicians." Adrienne Dern and Angela Heath demonstrate the creative ways the program is enlisting physicians and their staff. The Robert Wood Johnson Foundation's Faith in Action initiative supports volunteer programs across the country that provide assistance to caregivers and their family members. From North Carolina, Lesli Rowe describes the impact of one couple's involvement with another couple in need of support. And from California, Kathleen Kelly describes an online support service. A resource guide is also provided.

QUESTIONS FOR THE FUTURE

The test of a stimulating series of articles is not the answers they provide but the further questions they raise. And, as the guest editor of this issue, I believe it passes the test. Each reader will have different questions, different reactions, and different ideas about how to work with family caregivers or perhaps devise new research studies. All to the good. Perhaps in another few years another guest editor will take on this assignment and bring new insights and provocative suggestions to the field.

For now, here is a beginning, personal, list:

What do caregivers mean when they say they want "help"? Do they mean someone to offer comfort and advice, another person to take over some of the chores, or, more drastically, an acceptable way to extricate themselves from an unsupportable situation? Practitioners often respond to a plea for help with a menu of services that are available, rather than what caregivers might really want. There is certainly nothing wrong with information and referral, respite, and counseling-the services most often offered. They are essential. But they are based on the premise that the caregiver wants to and will continue caregiving and just needs a little reassurance and a referral to a support group or some other service. Can we accept and support the caregiver who wants to quit as readily as we do the one who is determined to carry on no matter the personal cost?

Can public policy and research take seriously the needs of the middle-income caregiver? When it comes to family caregiving, all else being equal, it is better to be very rich or very poor, and it is better to be very poor in a state with good Medicaid benefits than in one with meager ones. Adult children caregivers of people who are "dually eligible" for Medicare and Medicaid are in a favored position, especially if they are not poor themselves. But people in the middle-that is, most of us-are left to do for ourselves and pay our own way. An agenda for the future must confront the desire of people who need care to maintain independence while not being forced into impoverishment to receive care. Tax policies, not support groups, may turn out to be the most "help" for caregivers.

Who are the youngest caregivers and what do they need? Unlike the U.K., Australia, and New Zealand, where "young carers" are specific targets of research and programs, in the U.S. there has been little attention paid to this group of adolescents, preteens, and young adults. The aging field in particular has not addressed this group in any significant way, even though many youngsters are caring for grandparents and great-grandparents, perhaps after school while Mother, the primary caregiver, is at work. Grandparents raising grandchildren-one of the target populations of the National Family Caregiver Support Program-may in the not too distant future need caregivers themselves. Their grandchildren, by then teenagers or young adults, will in most cases become their caregivers. What does this mean for the educational and social development of these young people and for their future careers? If a teenager has a choice between an after-school job that has low pay but offers socialization and skill development and the nonpaying job of minding Grandma, which will she take? And will Grandma and her family allow her to make a voluntary choice? All the issues surrounding young caregivers are begging for research and program development.

Family caregiving is here to stay, but the way it is accomplished is still evolving. This issue of Generations provides a direction but not a map.

From Generations Winter 2003 issue, 27(4): 5-8. © 2003 American Society on Aging

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