Women Still Shouldering the Burden: Caregiving in the 21st Century.

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Women's Health Activist Newsletter
May/June 2006

By Kristen Suthers, PhD

The world is moved not only by the mighty shoves of the heroes, but also by the aggregate of the tiny pushes of each honest worker. – Helen Keller

What is caregiving?
In the summer of 2005, Justice Sandra Day O’Connor announced her retirement from the Supreme Court. Her reason? Justice O’Connor said that she needed to spend more time providing care for her husband, who suffers from Alzheimer’s Disease. For many women, Justice O’Connor’s decision resonated with their own circumstances and difficult decisions about work, life, and family.

Despite the significant strides the feminist movement has made over the last 50 years, women still shoulder a greater caregiving burden than men, not only as mothers, but also in their other roles as daughters, wives, sisters, and friends. In fact, female caregivers spend 50 percent more time providing care compared to male caregivers.(1) As the proportion of the population over age 65 increases, this phenomenon has become so common among women in their 40’s, 50’s, and 60’s that sociologists have coined the term “sandwich generation” to describe the squeeze many women feel as they care not only for their children, but also for their aging parents, siblings, and friends.

The term caregiver refers to anyone who provides assistance to someone else who is incapacitated and needs help. The National Center on Caregiving describes “informal caregiving” (that is, the care provided to a person in need by a family member or friend rather than a paid care worker) as the bedrock of the U.S. healthcare system. In this country, 52 million informal caregivers provide care an ill or disabled person aged 20 or older (there are, of course, also a multitude of people caring for disabled or ill children under age 20). The burden disproportionately is women’s: an estimated 59-75 percent of these caregivers are women.(1,2,3) The worth of these informal services provided by mostly female family members is estimated to be more than $257 billion annually; this is more than double the amount spent on paid home care and nursing home services combined.

Among the U.S. population over the age of 18, approximately one-fifth (21%) of both the White and African-American populations provide informal care, while a slightly lower percentage of Asian-Americans (18%) and Hispanic-Americans (16%) are engaged in caregiving.(4)

What are the health effects of caregiving on the caregiver?
Most people assume that caring for a family member is a fulfilling task, one that is motivated by loving relationships and loyalty. While caregiving can be a rewarding experience, it can also have a negative impact on a caregiver’s health, even under the best circumstances. Depression is a common experience. Between 20—50 percent of caregivers report depressive symptoms, and they consistently report having more such symptoms than their non-caregiving peers.(5,6) Not surprisingly, the lower a caregiver’s income, the more stressful the caregiving experience is.(7) In spite of these challenges, some caregivers also report beneficial effects of caregiving, including feelings of appreciation and an improved relationship with the care recipient.(8)

Providing care to a disabled or ill loved one can be not only mentally and emotionally taxing, but also physically challenging. Caregivers are more likely to have high blood pressure, elevated insulin levels, weak immune systems, and cardiovascular disease.(9,10,11) Among caregivers over age 65, 63 percent have a greater mortality risk than their non-caregiving peers.(12) In their own words, many caregivers describe their own health as being “fair to poor”. (1,13)

Resources & Solutions for Caregivers
As the Baby Boomers reach retirement age, policymakers are realizing the importance of proving supportive services to caregivers. Senator Kennedy recently introduced The Healthy Families Act (S. 1085) in the U.S. Senate. This legislation would mandate a General Accountability Office (GAO) study on the impact of caregiving on family members, and implement minimum standards of employment leave for caregivers. The legislation is especially important for working women who are also caregivers, since it offers job protections for employees who also provide family care.

Although legislative efforts are critical, public support for caregivers is likely to require a multi-faceted approach. One of the most critical elements will be to ensure that caregivers actually know about existing resources. A survey of caregivers in California found that 75 percent did not know where to access supportive services. Another study of Alzheimer’s caregivers found that 75 percent had “unmet needs”, that is, a problem that could be resolved through use of public resources, but is not being addressed.(14) Therefore, public health campaigns that educate caregivers about available resources in their community are an essential first step.

In 2000, the Older Americans Act Amendments established a program called the National Family Caregiver Support Program (NFCSP), which was modeled on a handful of successful State-level programs. This program provides supportive services for caregivers of adults over age 60 and for grandparents caring for children under age 18. Examples of services include: respite care, adult day services, home modifications, and emergency assistance systems. Everyone caring for an older adult should also know about State and Area Agencies on Aging (AAA). These are local agencies in communities across the country that serve as resource centers for aging services. Although some services are provided directly through AAA’s, the organizations also serve as referral systems for older adults.

Caregiving can be a challenging and difficult experience, especially for women who are caring for multiple people with little help; yet, at the same time, caregiving can be a rewarding experience when feelings of self-efficacy develop. Progress demands that women be supported in these efforts through more equitable distribution of caregiving between men and women, as well as the availability of adequate community resources.

For more information on caregiving resources, see: http://www.aoa.gov/prof/aoaprog/caregiver/caregiver.asp and http://www.caregiver.org/caregiver/jsp/home.jsp

References
(1) Family Caregiver Alliance Website, Accessed: (May 24, 2006) http://www.caregiver.org/caregiver/jsp/print_friendly.jsp?nodeid=439; U.S. Department of Health and Human Services (HHS). Informal Caregiving: Compassion in Action. Washington, DC: HHS. 1998.
(2) U.S. Department of Health and Human Services (HHS) and Assistant Secretary for Planning and Evaluation (ASPE). The Future Supply of Long-term Care Workers in Relation to the Aging Baby Boom Generation. Report to Congress. Washington, DC, HHS and ASPE. 2003.
(3) The Henry J. Kaiser Family Foundation (KFF), Harvard School of Public Health, United Hospital Fund of New York, and Visiting Nurse Service of New York. The Wide Circle of Caregiving: Key Findings from a National Survey: Long-Term Care from the Caregiver’s Perspective. Menlo Park: KFF, 2002.
(4) National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National Alliance for Caregiving, and Washington, DC: AARP, 2004.
(5) Schulz, R., A.T. O-Brien, J. Bookwals et al. Psychiatric and Physical Morbidity Effects of Dementia Caregiving: Prevalence, Correlates, and Causes. The Gerontologist 35:771-791. 1995.
(6) Cohen, D., D. Luchins, C. Eisdorfer et al. Caring for Relatives with Alzheimer’s Disease: The Mental Health Risks to Spouses, Adult Children, and other Family Caregivers, Behavior, Health and Aging 1:171-182. 1990.
(7) American Association of Retired Persons (AARP). In the Middle: A Report on Multicultural Boomers Coping with Family and Aging Issues. Washington, DC: AARP, 2001.
(8) Beach, S.R., R. Schulz, J.L Yee et al. Negative and Positive Health Effects of Caring for a Disabled Spouse: Longitudinal Findings from the Caregiver Health Effects Study. Psychology and Aging 15:259-271. 2000.
(9) Cannuscio, C.C., J. Jones, I. Kawachi et al. 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. 2002.
(10) Kiecolt Glaser, Ja., and R. Glaser. Chronic Stress and Age-Related Increases in the Proinflammatory Cytokine IL-6. Proceedings of the National Academy of Sciences, 2003.
(11) Lee, S, G.A. Colditz, L. Berkman et al. Caregiving and Risk of Coronary Heart Disease in U.S. Women: A Prospective Study. American Journal of Preventive Medicine 24: 113-119. 2003.
(12) Schulz, R. and S. R. Beach, Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study, JAMA 282 (1999): 2215-2219.
(13) Navaie-Waliser, M., P.H. Feldman, D.A. Gould et al. When the Caregiver Needs Care: The Plight of Vulnerable Caregivers. American Journal of Public Health 92:409-413. 2002.
(14) Scharlach, A., B. Sirotnik, S. Bockman et al. A Profile of Family Caregivers: Results of the California Statewide Survey of Caregivers. Berkeley: Center for the Advanced Study of Aging Services, U.C. Berkeley Press, 2003; Alzheimer’s Association and the National Alliance for Caregiving, Families Care: Alzheimer’s Caregiving in the United States. Chicago, IL: Alzheimer’s Association and Bethesda: National Alliance for Caregiving, 2004.