The economic value of family caregiving in 2006 was $350 billion, according to recent research, a figure that exceeded the total spending for either Medicaid ($342 billion) or Medicare ($300 billion) in 2005. Without the unpaid labor of family caregivers — provided at great physical, emotional and financial cost — the long-term care system in this country (if you can call it a “system”) would collapse. Nursing homes, far and away the most expensive form of care, would burst at the seams with elderly men and women who might otherwise have been supervised in the community by adult children and spouses.
There is widespread agreement that these devoted caregivers, thought to number about 33 million, are an essential national health care resource and will become increasingly necessary. The population of those ages 85 and above is soaring. Many will live for years unable to take care of their most basic needs. Hospital stays grow ever shorter, meaning that very sick people are sent home once their immediate health crises have passed.
And in an effort to rebalance institutional and community-based care, states are experimenting with reimbursement models that make it feasible for more people to stay home. While these are commendable pilot programs, family caregivers will continue to bear primary responsibility even when some subsidized home care is available. Currently, studies show, three-quarters of those who remain in their homes depend solely on family and friends to meet their day-to-day needs with no professional support whatsoever.
Yet these family caregivers — you and me — come to the task with no formal training, little in the way of help from medical professionals, scant information about how to find the services for their ailing loved one or for themselves, and no clue how to pay for it. When was the last time a doctors, nurse or social worker even inquired, “How are you doing?”
Rarely does anyone pay attention to the caregiver’s declining physical and emotional health, and many risk becoming patients themselves. Rarely does anyone tell us about hands-on care, about tube feedings, transferring bed-bound patients to wheelchairs or commodes, turning them to avoid bedsores, making judgments about which symptoms require immediate medical attention, and interacting with a cast of professionals often short on time, patience or shared information about the patient.
But at long last, this terrible disconnect is the subject of interest from many professional and advocacy organizations, which are conducting research on what sort of help caregivers need and how best to deliver it.
One of the most promising ideas is to assign the task of educating and supporting family caregivers to the geriatric nurses and social workers who already work most closely with families. For that to succeed, the nurses and social workers would themselves require additional training and reimbursement for the time they spend assessing the needs and capabilities of family caregivers and then teaching them necessary skills, giving them ongoing support and connecting them to additional resources.
How to engage nurses and social workers in this vital work was the subject of a symposium last January organized by AARP, the Family Caregiver Alliance, the Council on Social Work Education, the Rutgers Center for State Health Policy and the American Journal of Nursing.
“In policy and in practice, the U.S. long-term care system fails to recognize, respect, assess and address the needs of family caregivers,” wrote Lynn Friss Feinberg, deputy director of the National Caregiver Alliance in San Francisco, one of the symposium participants. “Practitioners must consider not only how the caregiver can help the care recipient, but also how the service provider must help the family. Are family members seen as ‘resources’ to the care recipient, or are they viewed as individuals with needs and rights of their own?”
Ms. Feinberg’s comments are included in a supplement to the September issue of the American Journal of Nursing, which has published the results of that symposium, including 17 essays by conference participants as well as accompanying research. The essays are designed so that professionals can use them to earn continuing education credits, but they are also accessible to the non-professional and a source of information, inspiration and hope for family caregivers who stand to benefit the most from this ambitious project.
The complete supplement is available, chapter by chapter, at this section of the journal’s Web site. Browse the table of contents; cherry-pick what interests you, or read it all. It will be time well spent.
Many of you, I’m sure, have stories of taking a loved one home from the hospital with no instructions on follow-up care and no one to call when you find yourself in trouble. What does it mean to be responsible for a sick, frail or demented loved one when you have no idea how to take care of them properly and nobody assigned to guide you, when you have no telephone assistance or home visits?
If you have thoughts on how the cracks in this part of our system should be filled, and in particular on how the expertise of nurses and social workers could be better utilized, please share them below.