The Invisible Caregiver

How Can Doctors Care for Them, Too?

By Delia O’Hara / American Medical News correspondent

America’s stealth weapon against chronic illness is a 46-year-old woman with a family, a high-school degree, a full-time job and a household income of $35,000. She has no particular training in health care. And, to tell you the truth, sometimes she doesn’t feel that great herself.

That is the profile of the typical unpaid caregiver — one of the many who provide an estimated 80% of the day-to-day tending the country’s chronically ill receive, according to a 1997 survey conducted by the National Alliance for Caregiving and AARP.

Because unpaid caregivers — men and women, relatives, neighbors or friends of the grievously ill — are not counted in the health care ranks, they might as well be invisible. Their needs are seldom considered. Their ideas about what is going on with the patient are rarely solicited.

Frequently, nobody even bothers to show them how to do the tasks they have taken on out of love and a sense of responsibility — often at a huge cost in terms of time, money (not only in outlay but also in lost wages, pension credits and career opportunities), their own interests and health.

But whether we admit it or even realize it, the American system of long-term care would collapse without them.

A recent study by the United Hospital Fund of New York found that if these 25 million caregivers were compensated at the market rate, their services would cost nearly $200 billion per year — about 20% of what the nation now spends on health care, and nearly twice the amount that goes toward home-health and nursing-home care combined.

“We are not just asking these people to bring in some chicken soup. They are giving complex medical care, operating medical machinery, giving medications,” says Carol Levine, director of the UHF’s Families and Health Care Project, which conducted the group’s study. Levine herself cares for her husband, who suffered a traumatic brain injury 11 years ago, and she’s a long-distance caregiver for her ill mother as well.

Twenty-five million caretakers of the chronically ill (an estimated 80%) are unpaid.

“For many people, this goes on for years and years, and that in itself takes a tremendous toll that is not appreciated,” Levine says.

The individuals who make up this resource are exceedingly vulnerable, and while they are in and out of the health care system on a regular basis on behalf of the person they are tending, they often neglect their own well-being.

One study found that mortality rates for older caregivers was 63% higher than for non-caregiving spouses.

“Caregivers have worse health and are more negatively affected by their health problems than people who are not caregivers,” says Cheryl Woodson, MD, a geriatrician in Chicago Heights, Ill.

“For most people, they just get worn out. I see people giving excellent care but at great cost to themselves physically. They are trying to do what it takes three shifts of maybe three people to do in a nursing home,” Dr. Woodson says.  And, she notes, “affluence doesn’t help. Those caregivers are every bit as fried as the ones who don’t have much money.”

Often, though, Dr. Woodson says, caregivers’ health problems are “not a function of caregiving but of self-neglect.” She sees cutting through that self-neglect as an important task for a physician. “You have to give them permission to take care of themselves,” she says.

That means not just getting medical care but getting a break once in a while, taking time off on a regular basis to have some fun, to visit a beauty salon, to get their own lives in order.


Until recently, there has been no concerted effort to reach out to caregivers, but as the population rapidly ages, that is beginning to change.

The National Family Caregiver Support Program, part of the Older Americans Act of 2000, will spend $125 million this year to deploy a national system, administered on the state and regional level, to provide help in getting services, counseling and the training of counselors, respite care and supplemental services such as day care.

In addition, the American Medical Association has developed a set of materials to strengthen the relationship between physician and caregiver. The packet revolves around a self-assessment questionnaire that helps the physician determine whether the caregiver is at risk for high stress and health problems.

In the past, caregivers’ needs may not have made it onto physicians’ radar screens. Caregivers often report that “doctors don’t give them any information about help that might be available, and routinely don’t recognize the kind of stress they’re under,” says Bonnie Lawrence, a spokeswoman for the Family Caregiver Alliance, a San Francisco-based resource center for caregivers of patients with brain disorders.

“It would help if the patient’s doctor would say, ‘How are you doing?’ ” she says.

Some groups that champion the interests of caregivers, hers included, have been trying to get physicians to notice caregivers and their needs for a while, says Gail Hunt, executive director for the National Alliance for Caregiving, based in Bethesda, Md.

“The response that most physicians give is, ‘I don’t have time. There’s no reimbursement code for talking with family members. I try to focus on the patient,’ ” Hunt says.

It might be more natural for the caregiver’s own physician to ask about the fallout from this extra “burden,” Hunt points out. But in her experience, physicians do not ask people as a routine matter if they are serving as an unpaid caregiver.

In fact, the caregiver’s own doctor should always ask about the caregiving process, specifically about stressors and other health problems that process might provoke.

Dr. Woodson advises physicians of older patients to seek a geriatric assessment for the patient and to make out a “level of care prescription” to give to the caregiver.

“You don’t want them to give too little care and commit neglect, and you don’t want them to give too much care and wear themselves out. You want them to understand how to give the appropriate amount of care,” she says.

For one thing, a detailed assessment is an important tool for the caregiver who needs to delegate tasks to others.

“They need to be able to say, ‘The doctor says Mom needs X. I’m doing Y. Can you do X?’ Otherwise, if it’s just them asking their brother or sister for help, they’ve got the same credibility they had when they were 7 years old,” Dr. Woodson says.

A geriatrician also knows about the agencies that provide respite help and other services. Every doctor who cares for older patients should have the number for the area agency on aging and the Eldercare Hotline.

“And get to know the caregiver. They often can give the best information about the patient’s health status,” Dr. Woodson says.

Physicians also should consider making house calls, says Edward Ratner, MD, president of the American Academy of Home Care Physicians.

Home visits foster a relationship that can’t occur in an office setting, allow assessments of the stressors that bedevil caregivers and create an “opportunity to meet all the caregivers [in a family], including those who may never come in for an office visit,” says Dr. Ratner, who has had caregiving experience with a child.

“Training programs over the past decades have not helped doctors to deal with caregivers,” says Ronda Talley, executive director of the Rosalynn Carter Institute for Human Development at Georgia Southwestern State University in Americus, Ga. In the present environment, though, physicians “can’t pretend it’s not part of their job” to look after the needs of the caregiver.

If caregivers are unable to provide the proper care, “then the medical plan, no matter how well it is implemented, is going to fail,” Talley says.

“We think [physicians] need to be much more aware of the caregivers’ stress. These people need to remain healthy, or you are looking at early institutionalization at great cost to the family or the state,” Lawrence says.

So important is the caregiver’s role that physicians should be prepared to go more than halfway to meet them.

“Caregivers are still incredibly intimidated in dealing with physicians,” Talley says. In the minds of the public, she says, “The honorific, esteemed figure from Marcus Welby is alive and well.”



Most unpaid caregivers receive little or no training in how to perform the often complex, sometimes arduous procedures that caring for loved ones requires, a new study shows.

Sixty percent of caregivers contacted in a random phone survey in New York said they had received no training from health care professionals in such basics as how to bathe a patient or move him from a chair to a bed.

The survey was conducted by the Families and Health Care Project of the United Hospital Fund of New York and the Visiting Nurse Service of New York, as part of a larger national study by the Harvard School of Public Health.

“The results we found in New York City don’t differ that much from the data that are coming in from around the country,” says Carol Levine, director of the Project and lead author of the New York report.

Techniques that professional caregivers learn as part of their training are never addressed with many unpaid caregivers. The survey found:

  • Thirty-eight percent of unpaid caregivers reported being given no training in how to change bandages and dressings.
  • Nearly one-fifth of caregivers said they were never taught how to operate essential medical equipment.
  • Sixteen percent said no one ever explained how to manage a prescription drug schedule.

Simple tasks can be daunting or even dangerous, Levine says.

“Transferring a disabled person from a bed to a chair can be extremely difficult. That’s how some of these people wind up with back trouble.”

This lack of preparation adds to the stress of the unpaid caregiver.

“These things are very daunting and very seldom addressed,” Levine says. “The attitude is, ‘You’ll figure it out,’ and people do, but there is a cost to be paid for this responsibility when you are not prepared to handle it all — a cost in terms of health, confidence and the ability to do other things in your life.”



Here are some steps a physician can take to help the unpaid caregiver:

  • Ask the caregiver at every visit, “How are you doing?”
  • Be an advocate for respite and well care, and for swift attention to any health problems caregivers have.
  • Make sure the caregiver knows how to do what’s necessary to care for the patient, and that the caregiver is able to do it.
  • Ask how caregivers think the patient is doing and if they have any suggestions.
  • Have referrals on hand to organizations that can help the caregiver — at least the phone number of agencies on aging and the Eldercare Hotline, (800) 677-1116. The hot line can access about 5,000 state and local service providers.
  • Consider making home visits.

American Medical News  9/17/01