Appendix Q:
Family Relationships and Caregiving

What is a Caregiver?

The term ìcaregiverî refers to anyone who provides assistance to someone else who needs it. A caregiver provides any or all of a range of help services: physical, household, medical, emotional, etc.

Since 1984, ìcaregiversî also refers to well-organized interfaith volunteer caregiver (IVCs) programs that provide a menu of services to the elderly and disabled in their homes. The whole purpose is to enable these persons to remain in their homes as long as possible with dignity, independence, and safety. Through a nation-wide grant program, Faith in Action, the Robert Wood Johnson Foundation has assisted more than 600 caregiver programs to be established. These caregiver programs provide services that include transportation to appointments, shopping, personal business, social contact and community involvement, and household assistance and respite care through referral to the family eldercare programs. Caregiver programs associated with the Foundation provide their services free of charge.

There are two types of caregiving: informal and formal. Informal care is help given by families. Formal care is professionally-rendered. Another way to think about the types of caregiving is to break it down into paid and unpaid sources. A personís long-term care needs are usually met through some combination of paid and unpaid sources.

Families and Caregiving

Families provide 80 to 90 percent of personal and instrumental help to older people. Since 1965 the assumption that modern families no longer take care of their elderly as they did in the past is wrong.

Caregivers tend to be family members who link their older member to the formal system, respond in emergencies, provide intermittent and acute care, share their homes and provide emotional support. About 66 percent of caregivers assist an older person with activities of daily living (ADLs). Of these approximately 19 percent assist with one or more ADL. Fifteen percent assists with two ADLs, and 33 percent assist with three or more ADLs.

Demographics of the Caregivers

Women, primarily wives, daughters, and daughters-in-law provide the bulk of long-term care for older people. Eighty-percent of caregivers are women; 41 percent spent more than forty hours a week providing care, yet 90 percent of those people worked outside the home for pay.

It is estimated that between one-third and one-half of caregivers are employed outside the home. Many caregivers, the ìsandwich generation,î have competing demands: between 20 and 40 percent of caregivers have children under age 18 to care for in addition to their disabled relative. The average woman can expect to spend 17 years caring for a child and 18 years caring for an elderly parent. On average, caregivers provide personal assistance and household maintenance chores for 12 hours per week per parent. Twenty-eight percent give care for eight hours or less, while 63 percent provide help for 21 hours or more care. Eleven percent provide constant care. Caregivers of non-community-dwelling patients provide an average of 286 hours per month or 66.5 hours per week of care.

Effects of Caregiving on Family Members

There are physical and mental effects of providing care to an older person or family member. Stress is a central issue in the discussion, and there is a growing awareness of the importance of caregiversí own support system. There are many resources designed to help caregivers cope with the demands and issues of caregiving. Caregivers receive their own support from formal sources and other family members and friends.

Is There Assistance Available?

Depending on your community, there are resources and support available to caregivers. You can contact your local Area Agency on Aging for information about referrals to educational programs, support groups, respite care services and counseling.

Resources

Children of Aging Parents (CAPS) 1/800 227-7294

National Alliance for Caregiving 303/718-8444

1. Internet Web Sites:

DHHS/Administration on Aging -ht://www.aoa.dhhs.gov/aoa.html

National Federation of IVCs, Kingston, NY - http://www.nfivc.org

National Council on Aging, Washington, DC - http://www.info/@ncoa org

References

Cardenas, Dan. 1996. Director, Volunteer Caregivers Association of Austin, Austin, Tx. Interview, March 31.

Family Caregiver Alliance. 1996. "Fact Sheet: Selected Caregiver Statistics." In Family Caregiver Alliance [electronic World Wide Web page]. San Francisco, California, 1977 [cited April 1977]. Available from http://www.caregiver.org

Kane, Rosalie A., and Joan Penrod. 1995. Family Caregiving in an Aging Society: Policy Perspectives. Thousand Oaks: Sage Publications, Inc.

Wolf, Douglas A., Beth J. Soldo, and Vicki Freedman. "The Demography of Family Care for the Elderly." In Aging and Generational Relations: Life Course and Cross-Cultural Perspectives. Edited by Tamara K. Hareven. New York: Aldinede Guyter.