Caring for the caregiver: AMA resource shows how doctors can take active role

Physicians should focus attention on the well-being of this hidden, at-risk population, as well as the patient they are treating.

Editorial. Nov. 24, 2003.

You see them often -- but they are rarely the focus of the office visit. They bring a parent, a spouse, or other relative who is living with Alzheimer's disease, cancer, the ravages of a stroke or a debilitating disease. And they see to it, day in and day out, that your patient receives the medicines, treatments and other care you prescribe.

Frequently, they cast aside their own health and well-being in the process.

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They are caregivers, and they serve a vital role in the American health system. Approximately 80% of home care services in this country are provided by them. If tallied, the value of their services would exceed $200 billion a year.

Generally, these caregivers are women, either elderly themselves or daughters or daughters-in-law juggling multiple responsibilities -- a job, children, financial pressures. But they also have a responsibility to themselves to which physicians can help them attend.

They are the hidden patients, according to the AMA, and their physical and emotional health is at risk -- marked by increased morbidity and mortality associated with burnout, self-neglect, excessive use of drugs or alcohol, and depression. Often they are so focused on the patient, the person for whom they provide care, that they fail to recognize that they need help, too.

Therefore, physicians who want to reach them must take the initiative and ask them how they are coping. To this end, AMA policy encourages training at the medical school and residency program level to prepare physicians to assess and manage caregiver stress and burden.

The AMA also offers doctors a useful tool to facilitate dialogue in the practice setting. It's a caregiver self-assessment questionnaire that can help busy doctors better identify and link this at-risk group with the services they need. It can also help improve communication and enhance the physician-family caregiver partnership.

The document is designed to take something that all doctors want to be able to do and make it more doable.

It begins with the addition of a simple question to the family or patient history: "Do you have responsibility for caregiving?"

If the response is positive, the caregiver should be encouraged to fill out an additional questionnaire.

From there, the questions are straightforward.

The document asks, "How are you?" and follows with this explanation -- "Caregivers are often so concerned with caring for their relative's needs that they lose sight of their own well-being." It also inquires about whether the caregiver feels overwhelmed, useful, needed; whether he or she has sleep disturbance or crying spells, or if he or she has had back pain or felt ill with stomach problems or headaches.

These queries are not meant to provide any specific diagnosis but to serve as an index of distress, to assist physicians in more completely understanding families' circumstances and to help caregivers realize that options exist to ease their burdens.

This AMA resource first became available in 2001. Earlier this year, it was incorporated into the National Assn. of Area Agencies on Aging's "Making the Link" program. This program works through local community agencies to empower physicians to know where to turn to begin the process of linking these families to community and support services. Sometimes, all it takes is a call to the eldercare locator, a national toll-free number listed on the back of the questionnaire, for caregivers and patients to begin to find the assistance they need.

In our health care system, we count on family members -- often elderly -- to care for each other. They want to. And physicians want to be able to help them. The AMA caregiver self-assessment questionnaire and other resources provide them with the tools they need to achieve this important goal. Physicians are encouraged to take advantage of their availability. After all, it will make a big difference in treating all patients facing these difficult situations -- both the obvious patient and the hidden one.

ADDITIONAL INFORMATION:

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AMA information on the health risks of caregiving, including links to the Caregiver Self-assessment Tool and other resources and journal articles (www.ama-assn.org/ama/pub/printcat/8802.html)