Caregiver Stress: Is There Help for the Helpers? - Minding Your Mind - Harvard Commentaries

Do you take care of a loved one who is severely ill? A spouse, a parent or a child? Then you know how stressful it can be. In an important study published in 2006 in the New England Journal of Medicine, researchers confirmed what experts long suspected: Stress can be tough on your health.

Researchers at Harvard Medical School and the University of Pennsylvania discovered that in the months and years after a spouse is hospitalized, the risk of death goes up for a partner thrust into the caregiver role. Drs. Nicholas A. Christakis and Paul Allison found evidence of this phenomenon by looking at a remarkably large number of records — nine years of Medicare data for half a million couples over the age of 65. They validated the well-known bereavement effect (the increased risk of death after the death of a spouse). But they also found that a spouse's illness in some cases is almost as risky for the partner as the spouse's death.

In the study, hospitalization was used as an indicator of severe illness. Overall, after a spouse goes in the hospital, the caregiver's risk of death rises somewhat, but not as much as it does after the death of a spouse.

After a spouse's hospitalization, the first month is the riskiest. Presumably the stress of the life change can be similar to the stress of a spouse's death. The risk decreases over a six-month period, then begins to climb again. Stress builds up over time if the caregiver loses social, emotional, economic or practical support. The stress is compounded if, as is common, the caregiver has his or her own health problems to manage.

Of great practical significance, the risk varies with the burden of the spouse's illness, the researchers learned. When a spouse is more debilitated, the risk of death goes up for the caregiver.

Illnesses like cancer are scary, but people with cancer often can continue their daily activities without help. In most cases, cancer does not put as much stress on caregivers as, for example, a hip fracture. In the latter case, if the spouse is severely compromised, the caregiver may need to take over running the household or provide direct physical care, such as bathing and toileting.

When a caregiver is dealing with a spouse suffering from dementia or psychiatric illness, the risk of death is highest of all.

When severely stressed, caregivers may lose energy to take care of themselves. Depending on their proclivities, they may turn to drinking, pay less attention to good nutrition, or stop taking care of their own medical needs.

Dementia care has been studied frequently. Here is what experts already know about the effects of stress on the physical and mental health of these caregivers:

They have higher levels of circulating stress hormones (similar to what is found in patients with severe depression).
Lymphocyte activity is blunted — lymphocytes are blood cells that work as part of the immune system.
Caregivers may be at more risk for developing higher blood pressure and heart disease.
Their cognitive or intellectual functioning is more likely to decline.
They have higher levels of depression, anxiety, anger and hostility.

An Italian study of dementia caregivers estimated that three-quarters of a caregiver's day is devoted to patient care. As patients get worse, more pressure is put on the caregiver. At the end stages of the disease, the caregiver may have as little as two hours per week of free time. So it should not be surprising that caregivers also have a relatively low quality of life.

Family members of people with severe and chronic mental illnesses are similarly stressed. As in the case of people with dementia, a spouse may be the only one available to compensate for a loved one's limitations, provide emotional support, or cope with unmanageable behavior. Psychiatric illnesses also carry an extra burden of shame and stigma.

Although the New England Journal of Medicine study did provide clear evidence of the harm of stress to caregivers, it still did not establish which approaches are most helpful for relieving that stress. And, it's likely to be a long time before we see changes in the health care system that might provide adequate help to caregivers.

Certainly, caregivers need support and sometimes need respite. Resources in the form of home health aides and nursing support are not always readily available, especially for seniors with fixed, low incomes. Before a patient is sent home from the hospital, more emphasis can be placed on training caregivers to manage predictable problems with confidence. If the spouse is in pain, is depressed, or is agitated, these problems should be evaluated and treated.

For some caregivers, stress management programs, problem solving training and even such techniques as meditation and yoga may help them cope with the stress. To be sure, the best caregivers are those who can find a way to take care of themselves, too.

Michael Craig Miller, M.D. is the editor in chief of the Harvard Mental Health Letter. He is also associate physician at Beth Israel Deaconess Medical Center and assistant professor at Harvard Medical School. He has been practicing psychiatry for over 25 years at Beth Israel Deaconess Medical Center. He teaches in the Harvard Longwood Psychiatry Residency Program.