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The Patient's Patients

Caring for the caregiver

Caring for a chronically ill loved one literally can make you sick. The AMA is helping physicians help overwhelmed caregivers.

Depression. Sleeplessness. Anxiety. Lack of concentration.

These aren’t the symptoms of a patient, but of a patient’s exhausted caregiver. With people living longer but not necessarily better, the number of people caring for a chronically ill family member or friend is on the rise. Unfortunately, caregivers can be so focused on providing for their loved one’s needs that they completely neglect their own.

“They don’t think of themselves as a resource that needs to be protected,” said Cheryl Woodson, MD, a Chicago geriatrician and internist. “Here they are protecting the finances, health and everything else for their loved one, but they are woefully neglecting the one resource that makes it all possible.”

The good news is that physicians are in a unique position to help because of their routine contact with chronically ill patients as well as caregivers themselves. Recognizing the important role physicians can play in helping the patients behind the patients, the AMA is offering a mini-kit to help physicians provide preventive services to this at-risk but hidden population. “Caregiver Health: Self-Assessment Questionnaires and Resources for Physicians” briefly describes the issue, lists caregiver resources, and provides a short self-evaluation for caregivers.

According to the Family Caregiver Alliance, an estimated 15 percent of adults in the U.S. provide care for seriously ill or disabled relatives, and that number is only going to grow in the coming years. Medical advances mean more elderly people are living longer, but also that more face chronic illnesses and disabilities. In 1996, about 33.9 million people in the United States, about one in eight, were age 65 or over. By 2030, there will be about 20 million older adults — more than twice their number in 1996.

Caring for a loved one at home is not a responsibility to be taken lightly. From common problems like a broken bone to more serious, long-term conditions such as Alzheimer's disease or stroke, knowing how to provide skilled care can speed a loved one's recovery or give him or her a better quality of life. The "American Medical Association Guide to Home Caregiving" offers practical tips and essential advice to home caregivers.

“Truly overwhelmed caregivers face increased morbidity and mortality, family conflicts, and failure to meet one’s personal and emotional needs,” said Joanne Schwartzberg, MD, AMA’s director of Aging and Community Health. Taking the time to assess the caregiver as well as the patient may seem like a luxury for most time-strapped physicians, but recognizing and dealing with caregiver stress is just as important for the patient’s health as the caregiver’s.

“Whatever perfect plan you put together for your patient, you can’t implement it without a healthy caregiver,” said Dr. Woodson, who worked closely with the AMA to develop its caregiver resource. “They’re the ones responsible for medication compliance, follow-up and nutrition. If a caregiver isn’t healthy, it’s very hard for the patient to be healthy.”

Manifestations of caregiver stress include burnout, self-neglect, excessive use of drugs or alcohol, depression, and neglect, abuse and premature institutional placement of the patient. By taking the self-evaluation provided by the AMA, caregivers can recognize and head off such problems before they start. But they may need a little nudge first.

In many cases, caregivers will not take action on their own, or even recognize the need for it, unless prodded by a physician. With help from the AMA’s caregiver resource, it takes only moments for physicians to ask, “How are you doing?” and to offer the questionnaire, which helps stressed-out caregivers acknowledge the pressures they face and plan out “next steps” to take care of themselves.

While the resource only is meant to serve as a guide, simply acknowledging caregiver stress is a critical first step. “People have a hard time admitting they feel frustration or fatigue or resentment,” Dr. Woodson said. “We need to point out that it’s okay to voice those feelings. That first conversation can open an avenue to activate a cascade of support.”