The High Costs of Caregiving

Especially with dementia, caregiving takes health toll.

What the Research Shows

Elder-careCaring for loved ones with chronic disease such as dementia can be exhausting. Just how exhausting, psychologists have discovered by reviewing dozens of studies on caregiver health. Thanks to studies like these, health-care and social-services providers have turned their attention to helping caregivers stay healthy and strong.

It's estimated that informal caregivers, typically spouses or adult children, provide 80 percent of the long-term care in the case of diseases such as Alzheimer's. The care, which until the late stages is usually home-based with little respite, can be required for many years. Caregivers who are old are likely to be dealing with their own health problems; caregivers who are adult children (usually age 45 and up) may suffer serious disruption at work and home.

Given the ongoing rise in dementia cases and reports of caregiver burnout, psychologists and other health professionals started collecting data about the link. By 2003, psychologist Peter Vitaliano, PhD, and his colleagues were able to look at 23 studies involving 3,072 participants aged 55 to 75 years old. When they matched caregivers to non-givers in 11 health categories, the researchers found a number of significant differences.

Caregivers had a 23 percent higher level of stress hormones and a 15 percent lower level of antibody responses than non-caregivers. Over time, elevated stress hormones can lead to high blood pressure and glucose levels, increasing the risk of hypertension and diabetes. Poorer immune response can make people more vulnerable to infections such as the flu, even after a flu shot.

To single out key studies in this area, psychoneuroimmunology pioneers Janice Kiecolt-Glaser, PhD, and Ronald Glaser, PhD, found that caring for family members with dementia can weaken the immune system for years after caregiving ends, raising the odds of a caregiver developing chronic illness. The pair compared former caregivers who had lost their spouse at least three years earlier with ongoing caregivers and found no difference in immune status or any evidence of recovery in the former group.

The costs are high, especially for older people who care for their husbands or wives. Caregivers with their own history of chronic illness who have caregiving-related stress have been found to have a 63 percent higher mortality rate than their non-caregiving peers.

Caregiving also takes a psychological toll. According to the National Family Caregivers Association, the roughly one out of four caregivers who care for a family member for at least 36 hours a week - basically making it a full-time job -- are more likely to show signs of depression or anxiety. Relative to peers who don't provide ongoing care, spouses can be depressed or anxious six times more often; adult children suffer these problems twice as often.

What the Research Means

Informal caregivers, who were estimated as of the year 2000 to number between 25 and 29 million - more than one out of every 10 Americans -- are a significant sub-population whose health is now known to be at risk. In addition, because they are more likely to be women than men, they face greater vulnerability in terms of both health and financial loss. Solid evidence of the health impact of caregiving gives psychologists and doctors insight into the close links between chronic stress and physical health. It also underscores the urgent need to support caregivers, not only to alleviate their suffering but also to reduce the cost to society as a whole.

How We Use the Research

Public policy and the health-care system now formally acknowledge the role played by informal caregivers, who until recently were the invisible, untrained, unpaid "frontline" workers of dementia care. Organizations such as the Alzheimer's Association provide support groups and training; state and local agencies are developing respite-care programs to provide essential breaks; caregivers are encouraged to practice relaxation techniques, attend to their health and cope actively with stress.

In 2000, the U.S. Administration on Aging created the National Family Caregiver Support Program. Through this program, states are expected to work with local area agencies on aging and community-based services to offer caregivers information about available services; help in gaining access to services; counseling, support groups and training; respite care; and limited supplemental services.

Cited Research

Arno, P. S. (2002, February 24). Economic value of informal caregiving: 2000. Presented at the American Association for Geriatric Psychiatry, Orlando, Fla. Available: http://www.thefamilycaregiver.org/pdfs/pa2000.ppt#1.

Cannuscio, C.C., Jones, C., Kawachi, I., Colditz, G. A., Berkman, L., & Rimm, E. (2002). Reverberation of family illness: a longitudinal assessment of informal caregiver and mental health status in the nurses' health study. American Journal of Public Health, 92, 305-1311.

Kiecolt-Glaser, J., & Glaser, R. (2003, June 30). Chronic stress and age-related increases in the proinflammatory cytokine IL-6. Proceedings of the National Academy of Sciences, 100, 9090-9095.

Schulz, R., & Beach, S. R. (1999, December 15). Caregiving as a risk factor for mortality: the caregiver health effects study. Journal of the American Medical Association, 282(23).

Vitaliano, P. P., Scanlan, J. M., & Zhang, J. (2003). Is caregiving hazardous to one's physical health? A meta-analysis. Psychological Bulletin, 129(6), 946-972.


American Psychological Association, June 26, 2006