“Typical” and “average” are words intended to draw an immediately recognizable picture of a population, trend, or statistical distribution. But sometimes these words conceal instead of clarify. Based on media reports and product ads, one might conclude that all family caregivers are women in their forties or fifties caring for mothers in their seventies and eighties while also holding down a job and raising children.

And while this is accurate “on average,” a substantial percentage of family caregivers do not fit this profile. Chief among them are spouses.

What does a “typical” caregiver do? Family caregiving is usually described in terms of assisting with Activities of Daily Living (ADLs), such as bathing and dressing, and Instrumental Activities of Daily Living (IADLs), such as shopping and transportation.

Again, the typical conceals the full range. While these measures describe a substantial portion of caregiver activities for people with chronic diseases or disabilities, they don’t include medical/nursing tasks like complex medication management, wound care, and operating medical equipment. All of these and more are commonly performed by unpaid, nonprofessional family members at home.

The Complex Reality of Spousal Caregiving

A new report, Family Caregivers Providing Complex Chronic Care to Their Spouses, reveals the complex reality behind “typical” conceptions of family caregiving. We hope that this report encourages health care and social service professionals to recognize and address the special needs of spousal caregivers. Produced by the United Hospital Fund (UHF) and the AARP Public Policy Institute, with funding from the John A. Hartford Foundation and the AARP Foundation, as well as staff support from the UHF, this report is a closer look at the subpopulation of spouses—20 percent of the total of 1,677 caregivers—in a nationally representative group of caregivers who participated in a December 2011 survey. The overall survey findings were reported in Home Alone: Family Caregivers Providing Complex Care, and a separate UHF/AARP paper compared employed and not employed caregivers.

The new report looks at who spousal caregivers are, what caregiving tasks they take on, and what they find difficult to do. It also digs into questions about who trains them and what help they get from professionals, family, or friends. The bottom line: compared with nonspousal caregivers (mostly adult children), spousal caregivers in the survey were older, poorer, less well educated, and less likely to be employed. Almost all lived with the ill spouse, making caregiving a 24/7 responsibility. They were more likely to feel that they had no choice in taking on these tasks and were more likely than nonspousal caregivers to report negative effects on the care recipient—for example, feeling that the medical/nursing tasks involved pain, discomfort, and embarrassment. They received very little training and, despite their economic and other disadvantages, they received less help from professionals and family than did nonspousal caregivers.

If spouses are so overwhelmed, why don’t they seek or accept more help? Our survey data did not answer that question, but I can offer some possibilities. Many couples close ranks in times of illness, not wanting to “burden the children,” fearful of losing independence, or suspicious of “strangers in the home.” They may take marriage vows—“in sickness and in health”—literally. Even if the family caregiver would accept help, the care recipient may refuse. Older caregivers may have limited financial resources and be unable or unwilling to hire in-home help or other services. The outside world may see none of this. Spouses may protect adult children from seeing the problems they face, and professionals may assume that all is well if there are no readily observable signs of trouble.

The Cumulative Impact of Grant Making

As a coauthor of the report, along with Susan Reinhard of the AARP Public Policy Institute and Sarah Samis of the UHF, I have a professional interest in these findings. But I also have a personal interest; for seventeen years I took care of my late husband, who suffered a traumatic brain injury and was left quadriplegic after an automobile accident. At the time of the accident I directed the New York City Citizens Commission on HIV/AIDS, and after it ended, I created the Orphan Project, focused on children left behind when a parent died of the disease.

But the problems I encountered caring for my husband overtook my professional commitment to HIV/AIDS work, to which the UHF had contributed as part of a consortium of funders. In 1996 I joined the UHF to create the Families and Health Care Project. Without a clear work plan or defined outcome, I wanted to find ways to make visible the challenges faced by the millions of lay people who were being expected to take on professional-level responsibilities at home with little preparation and support of any kind.

This was a new area for the UHF, a nonprofit, nonpartisan health services research organization with the broad mission of improving health care for all New Yorkers. Since then, it has used its grant-making capacity to support the development of partnerships between family caregivers and health care professionals and has also collaborated with many other individuals and groups.

The UHF itself has contributed significant resources to the Families and Health Care Project, but we are also dependent on foundation grants. We have benefited from the willingness of grantmakers to support what in the 1990s was a relatively new area of research and policy concern. Some funders saw it as a natural extension of their interest in aging or social justice; others saw the implications for meeting the health and long-term care needs of the growing population of older people.

In that sense, all our previous grantmakers have contributed to this project, whether in supporting work on family caregiving in general or in funding specific projects that led to the “Home Alone” study and this more specific report on spousal caregivers. For example, a project funded by the Robert Wood Johnson Foundation resulted in a book titled Family Caregivers on the Job: Moving Beyond ADLs and IADLs (United Hospital Fund, 2004). For that project, we invited Susan Reinhard, then at Rutgers University, whose background as a nurse led her to the same concerns that I had as a family caregiver, to look into the history of ADLs and IADLs. Susan’s chapter describes how these measures were created in the 1950s as a way to measure an older person’s road to recovery from a hip fracture and had nothing to do with chronic illness or family caregivers. Only when Medicare and Medicaid came on the scene in the 1960s, and policy makers started to worry that families were going to abandon their older relatives (which absolutely hasn’t happened). did ADLs and IADLs start to be used as criteria for eligibility for services and to describe what family caregivers do.

Our common interests resurfaced in 2011 when Susan, now head of the AARP Public Policy Institute, approached the UHF to collaborate on a national survey that would look, for the first time, at which medical/nursing tasks family caregivers provide. The survey was part of a larger AARP initiative, Professional Partners Supporting Family Caregivers, supported by the Hartford Foundation and the Jacob and Valeria Langeloth Foundation. It is not hyperbole to say that the results of the “Home Alone” survey stunned many people, even professionals who had not realized the extent or difficulty of the tasks routinely expected of family caregivers. The survey, which found that nearly half (46 percent) of all family caregivers performed medical/nursing tasks, in addition to ADLs and IADLs and care coordination, is a “game changer,” many people have told us.

A Personal Reflection

Among the many things I lost in my years as a spousal caregiver was my distinct identity. To my husband’s doctors and nurses, I was no longer Mrs. Levine, Ms. Levine, or even Carol. I became “The Wife,” as in “The Wife will do it.” No longer a caregiver, no longer a wife, I have carved out a new identity, different from the one I lost but satisfying on its own terms. Spouses need special attention, not assumptions that they are somehow already prepared and willing to do everything that needs to be done.

Related resources:

“Bridging Troubled Waters: Family Caregivers, Transitions, and Long-Term Care,” by Carol Levine, Deborah Halper, Ariella Peist, and David A. Gould, Health Affairs, January 2010.

“Getting Transition in Care Right: Two Agendas for Change,” by Carol Levine, Health Affairs Blog, September 3, 2013.

Read about the United Hospital Fund’s criteria for awarding its Health Care Improvement Grants: http://www.uhfnyc.org/grants/applications_and_criteria