What is Caregiving? 1

FCS2082 What is Caregiving? 1 Suzanna Smith 2 Who Are the Caregivers? Albert is 75 and lives with his 76-year-old wife Helen in their own home. Helen suffered a stroke several years ago. Albert helps Helen move from the bed to a chair, bathes her, and prepares her meals. A neighbor comes by twice a week to give Albert some time to relax. Albert's out-of-town children call regularly. His daughter who lives in town comes by once a week to do laundry. Luisa's 85-year-old widowed mother, Doña Margarita, lived alone until she suffered several health problems, including deteriorating eyesight and a fall. Because of these problems, Doña Margarita moved in with her daughter's family several years ago. Until recently, Doña Margarita was able to care for herself during the day while her daughter and son-in-law were at work. However, her health has worsened and she suffers some mental confusion. Luisa is concerned about leaving her mother at home alone during the day. She is thinking about quitting her job to provide full-time care. This is a difficult decision because she has been progressing toward a promotion since returning to work after her last child entered school. Like many Americans over 65, these elders need some help with routine daily tasks. These informal caregivers are a son or daughter, spouse, other relative, or a friend who help with at least one activity of daily living. An elder may live with the caregiver, or receive help from someone who lives close by or many miles away. In most cases, a single individual carries most of the burden of caregiving responsibilities the primary caregiver. Usually the caregiver is a family member, almost always a spouse or an adult child. Other family members, such as siblings, provide care when a spouse or adult child is not able. About three-fourths of family caregivers are women--wives, daughters, and sisters. However, many men do provide direct care or they help their caregiving wives. Women are more likely than men to do the "hands on" care, such as bathing, feeding, and toileting; and to help with laundry and cooking. Men are more likely to take charge of transportation as well as car and home repairs. Family caregivers spend 20-40 hours a week caring for a family member, over an average period of 4 to 5 years 1. This document is Fact Sheet FCS 2082, a series of the Department of Family, Youth and Community Sciences, Florida Cooperative Extension Service, Institute of Food and Agricultural Sciences, University of Florida. Publication date: August 1999. First published: November 1991. Revised July 2005. Please visit the EDIS Web site at http://edis.ifas.ufl.edu 2. Suzanna Smith, associate professor, Human Development, Department of Family, Youth and Community Sciences, Cooperative Extension Service, Institute of Food and Agricultural Sciences, University of Florida, Gainesville FL 32611. Appreciation is given to Jeff Dwyer, associate professor, College of Nursing, and Nayda Torres, professor, Department of Family, Youth and Community Sciences, University of Florida, for their review and helpful comments. The Institute of Food and Agricultural Sciences (IFAS) is an Equal Opportunity Institution authorized to provide research, educational information and other services only to individuals and institutions that function with non-discrimination with respect to race, creed, color, religion, age, disability, sex, sexual orientation, marital status, national origin, political opinions or affiliations. U.S. Department of Agriculture, Cooperative Extension Service, University of Florida, IFAS, Florida A. & M. University Cooperative Extension Program, and Boards of County Commissioners Cooperating. Larry Arrington, Dean

What is Caregiving? 2 (Crisst, 2005). If paid home care staff were to work these hours the estimated cost of caregiving would be between $45 and $94 billion a year! The odds of becoming a caregiver are increasing. Adult children are providing more care and more difficult care to more parents over much longer periods of time than ever before in United States history. For the first time in US history, the average American couple has more parents living (more than two) than children (less than two). American women spend more years caring for parents (18) than for children (17) and 25% of women caregivers are caring for both their parents and their children; these caregivers make up what is called the sandwich generation. On any given day, 12 million Americans are providing some kind of home care for an elderly parent or relative. As life expectancy increases, so does the need for help with the activities of daily life. What About Nursing Homes? Family members provide most of the nursing care for the elderly. Only about 5% to 7% of older adults are cared for in nursing homes at any one time. However, one in four elders will spend at least some time in a nursing home and the older the individual the more likely it is that they will need nursing care. This time usually occurs after the elder has been hospitalized for a fall, stroke, or some health problem that reduces the ability to function at home. Family members, together with the elder, usually decide on nursing home care.this often happens only after long and strenuous efforts to keep the elder at home. The 24-hour care that is required typically becomes too difficult for the caregiver to manage. In many instances, family members have been pushed to the limits of their endurance and their own health begins to suffer before they choose nursing home care. Who Receives Caregiving? People over 65 who need caregiving help are usually called "frail elders." These older people have difficulty with "activities of daily living," including at least one personal care task (e.g., bathing, toileting, eating, and dressing) or one "instrumental" activity, such as shopping, cooking, and transportation. An estimated 20 to 30 percent of those over 65 are considered frail. As people age, they are increasingly likely to suffer some kind of disability or impairment that leaves them in need of help. In the United States, women live longer than men, and are more likely to experience mental and physical impairments. Usually women are the recipients of care. Are You a Caregiver? Depending on the specific needs of the older person, caregiving responsibilities may include many different types of help, such as: round-the-clock supervision supervision of others who provide care shopping transportation lifting, bathing, dressing, and feeding financial and legal management and advice supervision of medication arranging for health care telephone reassurance listening, talking, and providing emotional support Caregiving may begin unexpectedly when the elder suffers a physical or mental illness or injury that limits his or her independence. Or, the responsibilities of a caregiver may develop gradually and increase over time as the elder's health declines. In either case, most carers are thrust into the situation without planning for it. They learn their skills "on the job." Caregivers frequently must change their lives in some major or minor way to help the elderly family member.

What is Caregiving? 3 The Stresses of Caregiving No matter how loving and rewarding the relationship, caregiving usually involves some personal sacrifice and stress for the caregiver. Caregiving needed by the chronically ill averages 25 to 30 hours per week for four or five years. It often leads to total care. When the elderly person becomes more dependent due to health problems or frailty in old age, caregiving usually becomes more difficult and begins to take a toll on the caregiver. In addition, most informal caregivers are employed full or part time, so the responsibilities of working and caregiving often conflict. Twelve percent of caregivers eventually quit their jobs due to work and caregiving demands. Fifty-five percent reduce their work hours. However, professional women are less likely to quit and are more inclined to hire help. Many employed women believe that it is better to pay someone to care for an elderly parent than to leave employment. Caregiving is a difficult job and many caregivers show symptoms of psychological stress and declines in physical and mental health, especially when caregiving continues over two years time. Here are some of the difficulties caregivers experience. Emotional Stresses Concern over the care recipient's health and safety Changes in household roles such as household financial management, meal preparation, and keeping in touch with friends and relatives. Change in identity due to the addition of a caregiving role and reductions in employment due to caregiving Loss of friends and supports due to increased time in caregiving Feelings of depression Feelings of anger and resentment about the change in the loved one and the caregiving role Feelings of guilt about wanting personal time or about feeling angry when the loved one needs care Physical Stresses Loss of sleep and fatigue from being constantly attentive and alert More health problems due to the caregivers aging and the demands of caregiving Financial Problems Worries about inadequate insurance coverage and about paying for nursing home care Leaving the labor force to care for elderly relatives and lost wages, lost opportunity to earn a higher income and lower retirement benefits. Husband's distress over the future impact of their illness on their wife. The Rewards of Caregiving Caregivers usually feel a responsibility and obligation to help an older family member and find many joys and rewards from caregiving. Spouses often feel that caregiving is part of the responsibility they accepted when they were married; it is an expression of love that is treasured by the care recipient. Husbands in particular may feel a need to express gratitude to their wives for their support and devotion to the home and family in the earlier years of the marriage. Couples can be drawn closer together through the expression of love, and the fulfillment of their commitment to care for their partner "in sickness and in health." Caregivers who master new tasks feel an increased sense of confidence and self-worth. For example, men may learn to cook and women may learn to make home repairs. Adult children who are caregivers usually help their parents willingly and feel satisfaction and a sense of accomplishment. Children may develop a closer relationship with their parents while sharing time and providing care; they may even be relieved to resolve old conflicts. Parents may express more appreciation of their adult children than they have in the past. Children may strengthen their relationships with brothers or sisters who are helping.

What is Caregiving? 4 Clearly there are many positive aspects of caregiving. A key for both the caregiver and the recipient of care seems to be a positive family relationship. Feelings of closeness and love, sharing humor and fun, and the pleasure of knowing someone well all seem to make receiving and giving care easier. Keeping these positive things in mind also seems to ease the strains of caregiving. In addition, caregivers seem to do better when they are supported by others. This may be informal support such as reassurance and help from friends and family. Or, it may be formal help through agencies that provide direct assistance such as meals and health care. It may be particularly important for caregivers of family members with difficult behavioral problems to get help from the community. In any case, having emotional support or more free time is vital to caregivers. Conclusions Most caregivers don't want a way out of caregiving. They see this as a responsibility, a time to repay their spouse or parents for the support and care provided in earlier years. However, caregiving places numerous emotional, physical, and financial demands on caregivers. In addition, employed caregivers often feel that they are holding two full-time jobs, their eight-to-five employment and their caregiving. To protect their personal health and economic resources, caregivers must find ways to reduce stress and to cope with caregiving so that they will be able to meet their caring, work, and family demands, and to enjoy the many parts of their lives. For more information about coping with caregiving, ask your Cooperative Extension Service agent for other publications in this series. Related publications on stress management, financial management, and nutrition are also available. References Administration on Aging. (2000). Elder action: Action ideas for older persons and their families. Retrieved July 8, 2003, from http://www.aoa.dhhs.gov/aoa/eldractn/caregive.html Administration on Aging. (n.d.) Family caregiving. Retrieved July 8, 2003, from http://www. aoa.gov/may2001/factsheets/family-caregiving.html AARP. (1995-2003). Balancing work and caregiving. Retrieved July 8, 2005 from http://www.aarp.org/money/careers/flexiblework/ a2003-10-27-caregiving-balancingwork.html Brody, E. M. & Schoonover, C. B. (1986). Patterns of parent care when adult daughters work and when they do not. The Gerontologist, 26, 372-381. Brody, E., Kleban, M., Johnsen, P., Hoffman, C., & Schoonover, C. (1987). Work status and parent care: A comparison of four groups of women. The Gerontologist, 27, 201-208. Caregiving can happen from many miles away. (2003, May 5). Crains Cleveland Business, 24, 20. Chio, A. Gauthier, A., Calvo, A., Ghiglione, P., & Mutani, R. (2005). Caregiver burden and patients perception of being a burden in ALS. Neurology, 64, 1780-1782. Clyburn, L. D., Stones, M. J., Hadjistavropoulos, T., & Tuokko, H. (2000). Predicting caregiver burden and depression in Alzheimers Disease. Journal of Gerontology: Social Sciences, 55B(1), S2-S13. Crist, J. D. (2005). The meaning for elders of receiving care. Journal of Advanced Nursing, 49, 485-493. Coward, R., & Dwyer, J. (in press). Demographic perspectives on family caregiving. In J. Dwyer & R. Coward (Eds.), Gender, Families, and Elder Care. Newbury Park, CA: Sage Press. Dwyer, J. & Coward, R. (in press). Gender, family, and long-term care of the elderly. In J. Dwyer & R. Coward (Eds.), Gender, Families, and Elder Care. Newbury Park, CA: Sage Press. Horowitz, A. (1985). Sons and daughters as caregivers to older parents: Differences in role performance and consequences. The Gerontologist, 25, 612-617.

What is Caregiving? 5 Montgomery, R. (in press). Gender differences in patterns of child-parent caregiving relationships. In J. Dwyer & R. Coward (Eds.), Gender, Families, and Elder Care. Newbury Park, CA: Sage Press. Musil, C. M., Morris, D. L., Warner, C. B., Saeid, H. (2003). Issues in caregivers stress and providers support. Research on Aging, 25, 505-526. Ostercamp, L. (1988). Family caregivers: America's primary long-term care resource. Aging, 358, 3-6. Stoller, E. (in press). Gender differences in the experiences of caregiving spouses. In J. Dwyer & R. Coward (Eds.), Gender, Families, and Elder Care. Newbury Park, CA: Sage Press. Sorenson, S., Pinquart, M., Habil, D., & Dubrstein, P. (2002). How effective are interventions with caretivers? An updated meta-analysis. The Gerontologist, 42(3), 356-372. Stone, R., Cafferata, G., & Sangl, J. (1987). Caregivers of the frail elderly: A national profile. The Gerontologist, 27, 616-626. Velkoff, V. A. & Lawson, V. A. (1998). Caregiving. Gender and Aging International Brief. Washington DC: U. S. Department of Commerce Bureau of the Census.