Caregiver stress: When helpers need help

A study published in the New England Journal of Medicine (February 16, 2006; Vol. 354, pp. 719–30) has called attention to the stress that results from caring for family members with medical and psychiatric illnesses. The evidence comes from an unusually large sample — nine years of Medicare records for a half-million couples over age 65. Researchers at Harvard Medical School and the University of Pennsylvania found that in the months and years after a wife or husband was hospitalized (often a sign of severe illness), the risk of death for a caregiving spouse rose. In some situations, having an ill partner was as risky as losing a spouse.

The danger was greatest in the first months after hospitalization, declined for six to nine months, then began to climb again. The authors of the article theorize that the effects of stress accumulate when caregivers lose social, emotional, economic, or practical support — and especially when, as is common, they have health problems of their own. Apart from the direct health effects of stress, they may also stop taking care of their own medical and nutritional needs, or fall back on maladaptive ways of coping such as excessive drinking.

The more disabled or debilitated a wife or husband was, the greater the risk to the caregiver. Cancer, for example, was less stressful than a hip fracture, which usually demands more direct physical care and interferes more with everyday activities.

The risk of death was greatest of all for people caring for a husband or wife with dementia or a psychiatric disorder. This result confirms what other studies have suggested. In their stress hormone levels, caregivers for people with dementia resemble severely depressed patients. Their lymphocytes — blood cells in the immune system — become less active, and their risk for high blood pressure and heart disease rises. They often have high levels of depression, anxiety, and anger. Even their intellectual functioning may decline.

An Italian study found that the average caregiver devoted three-fourths of his or — more commonly — her time to a patient with dementia. At the end stage, caregivers might have as little as two hours a week of free time. So their low quality of life is not surprising.

The families of people with severe and chronic mental illness undergo similar stress. Often a spouse is the only person available to compensate for the patient’s limitations, provide emotional support, and cope with unmanageable behavior. Psychiatric illnesses may also carry an extra burden of shame and stigma for the family.

The evidence in the New England Journal of Medicine study should help policymakers push for changes in the health care system. But it will take time to find out which approaches are most effective. Certainly caregivers, especially seniors with low incomes, would benefit from a greater availability of home health aides, visiting nurses, and social workers to provide practical support, ongoing education, encouragement, and help in solving practical problems. Caregivers may be less stressed if they understand the disease better or learn routines or strategies to cope with predictable problems. Health aides can provide respite from burdensome physical tasks like bathing, toileting, and dressing. Social workers may help the caregiver locate community resources and support networks, or advocate for services.

Equally important, caregivers must be able to take care of themselves. Some researchers have begun exploring whether such approaches as stress management, meditation, or yoga can reduce the burden and therefore the risk. A caregiver’s depression or other psychiatric symptoms should, of course, be evaluated and treated. This study may focus attention on all these ways of providing more help for the helpers