Southern Caregiver Resource Center Caring for those who care for others

Fact Sheet: Selected Caregiver Statistics Definition The term caregiver refers to anyone who provides assistance to someone else who is in some degree incapacitated and needs help: a husband who has suffered a stroke; a wife with Parkinson's disease; a mother-in-law with cancer; a grandfather with Alzheimer's disease; a son with traumatic brain injury from a car accident; a child with muscular dystrophy; a friend with AIDS. Informal caregiver and family caregiver are terms that refer to unpaid individuals such as family members, friends and neighbors who provide care. These individuals can be primary or secondary caregivers, full time or part time, and can live with the person being cared for or live separately. Formal caregivers are volunteers or paid care providers associated with a service system.1,2 Who Are the Caregivers? Magnitude There is wide latitude in the estimates of the number of caregivers in the U.S., depending on the definitions and criteria used. See citations below for source information. •

52 million informal and family caregivers provide care to someone aged 20+ who is ill or disabled.3

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25.8 million family caregivers provide personal assistance to adults (aged 18+) with a disability or chronic illness.4

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Nearly one out of every four households (23% or 22.4 million households) is involved in caregiving to persons aged 50 or over.5

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By the year 2007, the number of caregiving households in the U.S. for person's aged 50+ could reach 39 million.6

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5.87 - 78 million people (family, friends and neighbors) provide care to persons 65+ who need assistance with everyday activities.9

San Diego Main Office: 3675 Ruffin Road, Suite 230 • San Diego CA 92123 (858) 268-4432 • (800) 827-1008 • (858) 268-7816 Fax • E-mail: [email protected] Web Site: www.caregivercenter.org El Centro Office: 119 South Fifth Street • El Centro CA 92243 (760) 352-2588 • (760) 352-2583 Fax

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5 million informal caregivers provide care for someone aged 50+ with dementia.10

Gender •

Approximately 75% of those providing care to older family members and friends are female.11,12

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Even though some studies show a relatively equitable distribution of caregiving between men and women, female caregivers spend 50% more time providing care than male caregivers.13

Age •

The average age of family caregivers caring for someone aged 20+ has been estimated at 43.14

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Of those caring for someone aged 50+, the average age of family caregivers is estimated at 46.15

Ethnicity •

Family caregiving differs across ethnicities and cultures. For example, a study of Americans between the ages of 45 and 55 - the "baby boomers" - found that a much higher percentage of Asian Americans provide care for older relatives than do white, nonHispanic Americans: % of Individuals Aged 45 - 55 Caring for Parents by Ethnicity16 % Providing Care 19% 28% 34% 42%

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Ethnicity White African Americans Hispanic Americans Asian Americans

A similar trend was found in a study looking at family caregivers of adults aged 50+ although this study found caregiving to be more prevalent among African Americans than Hispanics: % of Individuals Aged 18+ Caring for Someone 50+ by Ethnicity17 % Providing Care 24% 29% 27% 32%

Ethnicity White African Americans Hispanic Americans Asian Americans

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About 43% of baby boomers born outside of the U.S. - compared to 20% of boomers born in the U.S. - provide care for older relatives.18

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Ethnic differences are also found with regard to the care recipient. Among people aged 70+ and who require care, whites are the most likely to receive help from their spouses; 2

Hispanics are the most likely to receive help from their adult children; and African Americans are the most likely to receive help from a nonfamily member.19 Relationships Between Caregivers and Care Recipients •

The person most likely to be providing care to an older person is a daughter:20 Relationship to Older Person Wife Husband Daughter Son Other Female Relative Other Male Relative Other Female Nonrelative Other Male Nonrelative

% of all Caregivers 13.4% 10.0% 26.6% 14.7% 17.5% 8.6% 5.7% 1.8%

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Other studies have found that a much higher percentage, 15%21- 24%22, of caregivers were caring for a friend or neighbor as opposed to a family member.

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Among adults aged 20-75 providing informal care to a family member or friend of any age, 38% provide care to aging parents and 11% provide care to their spouse.23

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In a national sample of caregivers who live with their care recipients, spouses account for about 62% of primary caregivers while adult children comprise 26%. Secondary caregivers are more likely to be adult children (46%) than spouses (16%).24

Employment Status •

25% of all workers provide elder care (65+).25

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Just over half of all caregivers for persons aged 50+ are employed full-time and almost two-thirds are employed either full- or part-time:26 Employment Status Employed full-time Employed part-time Retired Not employed

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% of all caregivers 51.8% 12.3% 15.9% 19.7%

Among working caregivers caring for a family and friend aged 65+, two-thirds report having to rearrange their work schedule, decrease their hours or take an unpaid leave in order to meet their caregiving responsibilities.27

Time Spent Caregiving Hours •

Caregivers of people aged 50+ spend an average of 17.9 hours per week providing care. This figure increases to 20 hours per week among those providing care for individuals aged 65+.29 3

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20% (4.5 million out of 22.4 million) of those caring for family or friends aged 50 and older spend over 40 hours per week providing care, with some providing constant care.30

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Ethnic differences exist in the number of hours of care provided per week to individuals aged 50+: African Americans 20.6 hours; Hispanics 19.8 hours; Whites 17.5 hours; and Asians 15.1 hours.31

Years •

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The duration of caregiving can last from less than a year to over 40 years. The majority of caregivers provide unpaid assistance for one to 4 years; 20% provide care for 5 years or longer.32 Caregivers spend an average of 4.5 years proving care.33

Distance •

Nearly 7 million Americans are long-distance caregivers for older relatives (i.e., travel a distance of one hour or more between the caregiver and older adult needing assistance).34

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The average travel time for these caregivers to reach their relatives is 4 hours.35

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One study found that 19% of caregivers for the elderly lived with the person they were caring for, 46% percent lived 20 minutes or less from the elderly person needing care, and 18% lived over one hour away.36

Impact on Physical Health •

A study of elderly spousal caregivers (aged 66-96) found that caregivers who experience mental or emotional strain have a 63% higher risk of dying than noncaregivers.37

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31% of those caring for persons aged 65+ describe their own physical health as "fair to poor".38

Mental and Emotional Effects •

Caregiving can be an emotional roller coaster. On the one hand, caring for our loved ones demonstrates our love and commitment. On the other hand, exhaustion, inadequate resources, and continuous caring can lead to burn out, stress and depression. Feelings Reported by People Caring for Their Parent39 Feeling loving appreciated proud worried frustrated sad or depressed overwhelmed

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% Reporting 96% 90% 84% 53% 37% 28% 22%

Older persons who lose a spouse respond differently based on whether or not they had cared for their spouse. Those who had provided care and suffered from stress as a result 4

of their caregiving actually showed improved health behaviors and no increase in distress as a result of their spouse's death. Those who had not acted as a caregiver responded to their spouse's death with an increase in depression and weight loss.40 •

Studies show that among caregivers, an estimated 46%-59% are clinically depressed. Approximately 49% of female caregivers and 31% of male caregivers experience depression as a result of caregiving. Among spouse caregivers, 21-25% of husbands and 50-52% of wives are depressed.41,42,43

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Caregivers use prescription drugs for depression, anxiety and insomnia two to three times as often as the rest of the population.44

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A number of studies have found that female caregivers are more likely than males to suffer from anxiety, depression, and other symptoms associated with emotional stress.45

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Stress in family caregivers is inversely correlated to income: the less income a caregiver has, the more stress he or she is likely to experience.46

Value and Costs of Informal Caregiving •

What is the estimated value of informal caregiving? If the services provided by informal caregivers (i.e. family, friends, neighbors) had to be replaced with paid services, it would cost an estimated $196 billion.47

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In 1997, $83 billion were spent on nursing home care compared to $32 billion for home care. As can be seen by the estimate above, the value of informal caregiving exceeds expenses for nursing home care and home care combined by $81 billion.48

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Researchers estimate that the cost of informal caregiving in terms of lost productivity to U.S. businesses is $11.4 billion annually.49

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As a result of their caregiving, informal caregivers are estimated to each lose an average of $25,494 in Social Security benefits, an average of $67,202 in pension benefits and an average of $566,433 in wage wealth. Combined, the result is a loss of $659,139 over the lifetime.50,51

Caregiver Assistance •

About one-half of primary caregivers provide care with no outside assistance whatsoever.52

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Contrary to popular belief, only an estimated 10% to 20% of family caregivers use formal services through public or private agencies.53,54,55

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Support services for caregivers, including counseling, information and ongoing support, have been shown to deter institutionalization of care recipients with moderate dementia by nearly a year.56

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Caregivers of persons with dementia who use adult day services experience less stress and better psychological well-being than those who don't use the service.57

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Footnotes 1

Fradkin, L.G. and Heath, A. (1992). Caregiving of Older Adults. ABC-CLIO, Inc., Santa Barbara, CA. 2

McConnell, S. and Riggs, J.A. (1994). A Public Policy Agenda: Supporting Family Caregiving. In M.A. Cantor (Ed.) Family Caregiving: Agenda for the Future. American Society on Aging, San Francisco, CA 3

Health and Human Services (June, 1998). Informal Caregiving: Compassion in Action. Department of Health and Human Services, Washington, DC. Based on data from the National Survey of Families and Households (NSFH). 4

Arno, P. S., Levine, C. and Memmott, M. M. (1999). The Economic Value of Informal Caregiving. Health Affairs, Vol. 18, No. 2, pp. 182-188. Data from 1987/1988 National Survey of Families and Households (NSFH). 5

National Alliance for Caregiving and AARP (June, 1997). Family Caregiving in the U.S.: Findings From a National Survey, National Alliance for Caregiving, Bethesda, MD and AARP, Washington, DC. 6

National Alliance for Caregiving and AARP (June, 1997). Family Caregiving in the U.S.: Findings From a National Survey, National Alliance for Caregiving, Bethesda, MD and AARP, Washington, DC. 7

Spector, W. D. et al. (September, 2000). The Characteristics of Long-Term Care Users (AHRQ Publication No. 00-0049). Agency for Healthcare Research and Policy, Rockville, MD. 8

Health and Human Services (June, 1998). Informal Caregiving: Compassion in Action. Department of Health and Human Services, Washington, DC. 9

Both of these reports used data from 1994 National Long-Term Care Survey. The Health and Human Services report also incorporated data from the 1982 National Long-Term Care Survey and the Informal Caregiver Supplement to the 1989 National Long-Term Care Survey. 10

National Alliance for Caregiving and AARP (June, 1997). Family Caregiving in the U.S.: Findings From a National Survey, National Alliance for Caregiving, Bethesda, MD and AARP, Washington, DC. 11

Health and Human Services (June, 1998). Informal Caregiving: Compassion in Action. Department of Health and Human Services, Washington, DC. Based on data from the National Survey of Families and Households (NSFH). 12

National Alliance for Caregiving and AARP (June, 1997). Family Caregiving in the U.S.: Findings From a National Survey, National Alliance for Caregiving, Bethesda, MD and AARP, Washington, DC. 13

Health and Human Services (June, 1998). Informal Caregiving: Compassion in Action. Department of Health and Human Services, Washington, DC.

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14

Health and Human Services (June, 1998). Informal Caregiving: Compassion in Action. Department of Health and Human Services, Washington, DC. 15

National Alliance for Caregiving and AARP (June, 1997). Family Caregiving in the U.S.: Findings From a National Survey, National Alliance for Caregiving, Bethesda, MD and AARP, Washington, DC. 16

AARP (July, 2001). In the Middle: A report on Multicultural Boomers Coping with Family and Aging Issues. AARP, Washington, DC. 17

National Alliance for Caregiving and AARP (June, 1997). Family Caregiving in the U.S.: Findings From a National Survey, National Alliance for Caregiving, Bethesda, MD and AARP, Washington, DC. 18

AARP (July, 2001). In the Middle: A report on Multicultural Boomers Coping with Family and Aging Issues. AARP, Washington, DC. 19

National Academy on an Aging Society (May, 2000). Challenges for the 21st Century: Chronic and Disabling Conditions: Number 7: Caregiving: Helping the Elderly with Activity Limitations. National Academy on an Aging Society, Washington, DC. 20

Spector, W. D. et al. (September, 2000). The Characteristics of Long-Term Care Users (AHRQ Publication No. 00-0049). Agency for Healthcare Research and Policy, Rockville, MD. 21

National Alliance for Caregiving and AARP (June, 1997). Family Caregiving in the U.S.: Findings From a National Survey, National Alliance for Caregiving, Bethesda, MD and AARP, Washington, DC. 22

Health and Human Services (June, 1998). Informal Caregiving: Compassion in Action. Department of Health and Human Services, Washington, DC. 23

Health and Human Services (June, 1998). Informal Caregiving: Compassion in Action. Department of Health and Human Services, Washington, DC. 24

Kennedy, J. and Walls, C. (1997). A National Profile of Intra-Household ADL/IADL Assistants: Population Estimates From the 1992 and 1993 Surveys of Income and Program Participation. Department of Community Health, University of Illinois at Urbana, Champaign, IL. 25

Bond, J. T., Galinsky, E. and Swanberg, J. E. (1998). The 1997 National Study of the Changing Workforce. Families and Work Institute, New York, NY. 26

National Alliance for Caregiving and AARP (June, 1997). Family Caregiving in the U.S.: Findings From a National Survey, National Alliance for Caregiving, Bethesda, MD and AARP, Washington, DC. 27

Health and Human Services (June, 1998). Informal Caregiving: Compassion in Action. Department of Health and Human Services, Washington, DC.

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28

National Alliance for Caregiving and AARP (June, 1997). Family Caregiving in the U.S.: Findings From a National Survey, National Alliance for Caregiving, Bethesda, MD and AARP, Washington, DC 29

Health and Human Services (June, 1998). Informal Caregiving: Compassion in Action. Department of Health and Human Services, Washington, DC. 30

National Alliance for Caregiving and AARP (June, 1997). Family Caregiving in the U.S.: Findings From a National Survey, National Alliance for Caregiving, Bethesda, MD and AARP, Washington, DC. 31

National Alliance for Caregiving and AARP (June, 1997). Family Caregiving in the U.S.: Findings From a National Survey, National Alliance for Caregiving, Bethesda, MD and AARP, Washington, DC 32

Stone, R., Cafferata, G.L., and Sangl, J. (1987). Caregivers of the Frail Elderly; A National Profile. The Gerontologist, Vol. 27, No. 5, pp. 616-626. 33

National Alliance for Caregiving and AARP (June, 1997). Family Caregiving in the U.S.: Findings From a National Survey, National Alliance for Caregiving, Bethesda, MD and AARP, Washington, DC. 34

Wagner, D.L. (Spring, 1997). Long-Distance Caregiving for Older Adults. Healthcare and Aging, National Council on the Aging, Washington, DC. 35

Wagner, D.L. (Spring, 1997). Long-Distance Caregiving for Older Adults. Healthcare and Aging, National Council on the Aging, Washington, DC. 36

Women's Bureau, U. S. Department of Labor (May, 1998). Work And Elder Care: Facts For Caregivers And Their Employers. U. S. Department of Labor, Washington, DC. 37

Schulz, R. and Beach, S. R. (December, 1999). Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study, JAMA, Vol. 282, No. 23, pp. 2215-2219. 38

Health and Human Services (June, 1998). Informal Caregiving: Compassion in Action. Department of Health and Human Services, Washington, DC. 39

Family Circle and Kaiser Family Foundation (September, 2000). The Family Circle/Kaiser Family Foundation National Survey on Health Care and Other Elder Care Issues: Summary of Findings and Chart Pack. The Henry J. Kaiser Family Foundation, Menlo Park, CA. 40

Schulz, R. et al. (June, 2001). Involvement in caregiving and Adjustment to Death of a Spouse. JAMA, Vol. 285, No. 24, pp. 3123-3129. 41

Gallagher, D. Rose, J., Rivera, P., Lovett, S., and Thompson, L (1989). Prevalence of Depression in Family Caregivers. The Gerontologist, Vol. 29, No. 4, pp.449-456. 42

Family Caregiver Alliance (December, 2000). California's Caregiver Resource Center System Annual Report Fiscal Year 1999-2000. Family Caregiver Alliance, San Francisco, CA.

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43

Cohen, D., Luchins, D., Eisdorfer, C., Paveza, G., Ashford, J., Gorelick, P., Hirschman, R., Freels. S,. Levy, P., Semia, T., and Shaw, H. (1990). Caring for Relatives With Alzheimer's Disease: The Mental Health Risks to Spouses, Adult Children, and Other Family Caregivers. Behavior, Health and Aging, Vol. 1, No. 3, pp. 171-182. 44

George, L.K., and Gwyther, L.P. (1986). Caregiver Well-Being: A Multidimensional Examination of Family Caregivers of Demented Adults. The Gerontologist, 26(2), 253-260. As cited by Scharlach, A.E., Lowe, B.F., and Schneider, E.L. (1991). Elder Care and the Work Force: Blueprint for Action. Lexington Books, Canada. 45

Yee, J. L. and Schulz, R. (2000). Gender Differences in Psychiatric Morbidity Among Family Caregivers: A Review and Analysis. The Gerontologist, Vol. 40, No. 2, pp. 147-164. 46

AARP (2001). In the Middle: A Report on Multicultural Boomers Coping with Family and Aging Issues, Executive Summary. AARP, Washington, DC.

47

Arno, P. S., Levine, C. and Memmott, M. M. (1999). The Economic Value of Informal Caregiving. Health Affairs, Vol. 18, No. 2, pp. 182-188. 48

Arno, P. S., Levine, C. and Memmott, M. M. (1999). The Economic Value of Informal Caregiving. Health Affairs, Vol. 18, No. 2, pp. 182-188. 49

Metlife Mature Market Group (June, 1997). The Metlife Study of Employer Costs for Working Caregivers. Metlife Mature Market Group, Westport, CT. 50

Metlife Mature Market Institute (November, 1999). The Metlife Juggling Act Study: Balancing Caregiving with Work and the Costs Involved. Metropolitan Life Insurance Company, New York, NY. 51

Wage wealth is defined as the current value of life-time wages calculated as of the date of retirement. 52

American Association of Retired Persons (AARP) and The Travelers Foundation (1988). A National Study of Caregivers: Final Report. AARP, Washington, DC. 53

Brody, E.M. (1990). Women in the Middle: Their Parent Care Years. Springer Publishing Co., New York, NY. 54

Gwyther, L.P. (1990). Clinician and Family: A Partnership for Support. In N.L. Mace (Ed.), Dementia Care: Patient, Family and Community. The Johns Hopkins University Press, Baltimore, MD. 55

American Association of Retired Persons (AARP) and The Travelers Foundation (1988). A National Study of Caregivers: Final Report. AARP, Washington, DC. 56

Mittelman, M., et al. (1996). A Family Intervention to Delay Nursing Home Placement of Patients with Alzheimer's Disease. Journal of the American Medical Association, vol. 276, No. 21, pp. 1725-1731.

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Zarit, S.H., Stephens, M.A.P., Townsend, A. and Greene, R. (1998). Stress Reduction for Family Caregivers: Effects of Adult Day Care Use. Journal of Gerontology: Social Sciences, Vol. 53B, No. 5, pp. S267-S277.

Resources Southern Caregiver Resource Center 3675 Ruffin Rd Ste 230 San Diego CA 92123 (858) 268-4432 (800) 827-1008 (in CA) E-mail: [email protected] www.caregivercenter.org The Southern Caregiver Resource Center offers services to family caregivers of brain-impaired adults or of the frail elderly, and is for residents of San Diego and Imperial counties. Services include: information and referral, counseling, family consultation and case management, legal and financial consultation, respite care, education and training, and Link2Care Internet site.

Prepared by Family Caregiver Alliance. Funded by the Archstone Foundation. Revised October, 2001. © All rights reserved.

SCRC Fact Sheet/Rev.12-08

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