Caregiver

Definition

A caregiver (or carer in the United Kingdom and Australia) is someone who is responsible for the care of another person. In terms of elder care, a more adequate definition for a caregiver is someone who provides unpaid care for an elderly or infirm family member, spouse or friend. Although some people use such phrases as “voluntary caregiver” or “informal caregiver” to distinguish between unpaid relatives or friends and paid health care workers or care assistants (also called formal caregivers), many caregivers dislike these phrases because they minimize the impact caregiving may have on the giver's life, and because caregiving may not be truly voluntary but rather, accepted from a sense of duty.

Description

Background

Much of the discussion of caregivers in Canada and the United States is the result of major social and economic changes since World War II. Otto von

Bismarck established the world's first social security system in Germany in 1889. He established 70 as the retirement age (it was lowered to 65 in 1916) because few people born in the nineteenth century lived that long. Americans (of either sex and all races) born in 1970 had already attained an average life expectancy of 70 and those born in 2004 have an average life expectancy of 78. This longer life span means that many seniors will be dependent on the care of others for a longer period of time than was the case a century ago.

In addition to increasing longevity, there are other factors that have contributed to the pressure on contemporary caregivers:

• The entry of women into the workforce in large numbers since the 1950s, which has decreased the traditional pool of caregivers. This includes older women: The number of working women over the age of 55 is projected to increase by 52% between 2000 and 2010, from 6.4 million to 10.1 million.
• Smaller families, which means fewer adult children to share the care of elderly parents. Almost one-quarter of American households provide care to relatives or friends age 50 or older as of 2008.
• A high divorce rate, which leaves fewer women without a spouse to help them care for an elderly parent. Divorce and remarriage tend to weaken people's sense of duty toward their biological parents; if a man has remarried and has children by the second wife, his children by his first wife may feel little sense of obligation toward him when he is old.
• An increased number of seniors with Alzheimer's disease and other long-term dementias, which extends the time period that these seniors require care.
• The rising cost of health care, including home health care services as well as medications, assistive devices, and surgical procedures. As a measure of the economic costs of unpaid caregiving, it is estimated that the services of family caregivers in the United States are worth $306 billion per year. Family caregiving is worth more than the costs associated with home health care ($32 billion) and nursing home care ($92 billion) combined.

Despite the economic burden of family caregiving, 65% of the elderly in the United States rely on unpaid caregivers (family and friends) for long-term care; another 30% have paid caregivers in addition to family care. Having a family caregiver often determines whether a senior can remain in his or her home; 50% of seniors without a caregiver are in nursing homes , compared to only 7% of seniors with caregivers.

Caregiver statistics

According to the American Association of Retired Persons (AARP ), the statistically average caregiver in the United States is a married 46-year-old woman caring for her widowed mother who does not live with her. She is employed in addition to serving as an unpaid caregiver. Approximately 60% of family caregivers are women as of the early 2000s.

Other statistics about caregivers in the United States:

• 30% of caregivers for the elderly as of 2008 are themselves 65 or older
• family caregivers represent 13% of the adult American workforce
• more than 50 million Americans provide care for an elderly, chronically ill, or disabled family member in any given year
• 41% of caregivers for seniors are adult children; 23% are spouses
• American businesses lose as much as $34 billion each year because of employees' need to take off time to care for a spouse or family member over the age of 50

Viewpoints

The aging of the American population has led to greater recognition of the needs of caregivers as well as the needs of those they care for. Several major organizations that offer information about caregiving resources and emotional support for caregivers were founded in the 1980s and early 1990s.

Stresses on caregivers

The impact of stress on family caregivers is reflected in the fact that caregivers have higher mortality rates (44% for women, 35% for men) than noncaregivers. One study estimated that high stress levels can shorten a caregiver's life by as much as 10 years.

Caregiver stress has a number of different aspects:

• Financial. Two-thirds of working caregivers of seniors over 65 reported that they worked fewer hours, gave up opportunities for promotion, or took unpaid leave to care for the senior. Lost income hits women caregivers particularly hard; when they do return to the workforce, they often are offered lower wages and reduced retirement benefits. It is not unusual for an older woman to care for an elderly husband and then discover that there are few financial resources when she needs care.
• Loss of privacy. Caregivers who take an elderly parent into their home often find that they have no place in the house to retreat for time alone.
• Loss of leisure time. Caregiving is time-consuming.
• Family conflict. In some cases this results from disagreements among adult siblings over responsibility for the senior's care. In other families, the conflict is intergenerational, as when middle-aged adults are caring for a senior and rearing their own children in the same house.
• Physical illness. Caregivers are often sleep-deprived and emotionally exhausted; they may adopt unhealthy eating habits and stop exercising. The resulting strain on the immune system and other body systems can lead to such stress-related disorders as high blood pressure, heart disease, chronic headaches, and susceptibility to infections.
• Depression and anxiety disorders. Between 20% and 50% of caregivers develop depression, with the rate particularly high among those caring for a senior with dementia. Another common cause of depression in caregivers is unresolved relationship issues with the senior; many adult children become angry and depressed when caring for a parent who may have rejected or abused them when they were younger.

Recent legal developments

Amendments passed in 2000 to the Older Americans Act of 1965 established the National Family Caregiver Support Program, which requires each state to provide five basic services for caregivers: Information about available services; assistance in gaining access to these services; training and support groups to help caregivers improve their decision-making skills; respite care; and supplemental services on a limited basis.

Self-care for caregivers

The Administration on Aging (AoA) offers ten “survival tips” for caregivers:

• Plan ahead for the senior's care.
• Learn about available resources.
• Take one day at a time.
• Develop contingency plans in case the original care plan does not work.
• Be willing to accept help.
• Make your own health a priority.
• Get enough sleep.
• Make time for leisure activities.
• Eat wisely and get regular exercise; be good to yourself.
• Share your feelings with trusted others.

KEY TERMS

Formal caregiver —A phrase sometimes used to describe home health care workers or other paid caregivers.

Informal caregiver —A term sometimes used for an unpaid caregiver.

Respite care —Short-term inpatient or outpatient services intended to give the patient's primary caregiver temporary relief.

Resources

BOOKS

Mace, Nancy L., and Peter V. Rabins. The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life, 4th ed. Baltimore: JohnsHopkins University Press, 2006.

Mintz, Suzanne Geffen. A Family Caregiver Speaks Up: “It Doesn't Have to Be This Hard.” Sterling, VA: Capital Books, 2007.

Morris, Virginia. How to Care for Aging Parents, 2nd ed. New York: Workman Publishing Co., 2004.

PERIODICALS

Burridge, L., S. Winch, and A. Clavarino. “Reluctance to Care: A Systematic Review and Development of a Conceptual Framework.” Cancer Nursing 30 (March-April 2007): E9-E19.

Glendon, Mary Ann. “Discovering Our Dependence.” First Things October 2004. Available online at http://www.firstthings.com/article.php3?id_article=383&var_recherche=caregiving [cited February 19, 2008].

Schultz, R., and S. R. Beach. “Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study.”Journal of the American Medical Association 282 (December 15, 1999): 2215–2219.

Son, J., A. Erno, D. G. Shea, et al. “The Caregiver Stress Process and Health Outcomes.” Journal of Aging and Health 19 (December 2007): 871–887.

Vellone, E., et al. “Quality of Life for Caregivers of People with Alzheimer's Disease.” Journal of Advanced Nursing 61 (January 2008): 222–231.

Zivin, K., and N. A. Christakis. “The Emotional Toll of Spousal Morbidity and Mortality.” American Journal of Geriatric Psychiatry 15 (September 2007): 772–779.

OTHER

Administration on Aging (AoA) Fact Sheet. Family Caregiving. Washington, DC: Department of Health and Human Services, 2003. Available online at http://www.aoa.gov/press/oam/May_2003/media/fact_sheets/National%20Family%20Caregiver%20Support%20Program.pdf [cited February 19, 2008].

Older Americans Act of 1965. 2000. Available online at http://www.aoa.gov/about/legbudg/oaa/legbudg_oaa.asp [cited February 19, 2008].

ORGANIZATIONS

Administration on Aging (AoA), One Massachusetts Avenue, Washington, DC, 20201, (202) 619-0724, aoainfo@aoa.hhs.gov, http://www.aoa.gov.

American Association of Retired Persons (AARP), 601 E. Street NW, Washington, DC, 20049, (800) OUR-AARP (687-2277), http://www.aarp.org.

Family Caregiver Alliance (FCA) National Center on Caregiving, 180 Montgomery Street, Suite 1100, San Francisco, CA, 94104, (415) 434-3388, (800) 445-8106, info@caregiver.org, http://www.caregiver.org.

National Alliance for Caregiving, 4720 Montgomery Lane, 5th Floor, Bethesda, MD, 20814, info@caregiving.org, http://www.caregiving.org.

National Family Caregivers Association (NFCA), 10400 Connecticut Avenue, Suite 500, Kensington, MD, 20895, (301) 942-6430, (800) 896-3650, (301) 942-2302, info@thefamilycaregiver.org, http://www.nfcacares.org.

Rebecca J. Frey Ph.D.