Caregiver Fact Sheet

Fact Sheet: Selected Caregiver Statistics

Courtesy of Family Caregiver Alliance

Definitions

The term caregiver refers to anyone who provides assistance to someone else who needs it: 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; or a child with muscular dystrophy. Informal caregiver is a term used to refer to unpaid individuals such as family members and friends who provide care. These persons 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. (Notes: 1,2 below)

Magnitude

How many family caregivers are there in the U.S.?

	Estimates vary on the number of caregivers in the U.S., depending on the definition used.
	Nearly one out of every four U.S. households (23% or 22.4 million households) is involved in caregiving to persons aged 50 or over. 31
	An estimated 15% of U.S. adults are providing care for seriously ill or disabled relatives. 3
	There are an estimated 13.3 million Americans who have a parent or spouse who is elderly and disabled and have the potential responsibility for their care. 5
	More than 7 million spouses, adult children, other relatives, and friends or neighbors provide unpaid help to disabled older adults living in the community. 5

Long-distance caregiving

	Nearly 7 million Americans are long-distance caregivers for older relatives (i.e., a travel distance of one hour or more between the caregiver and older adult needing assistance). 34
	The average travel time for these caregivers to reach their relatives is 4 hours. 34

How many persons are being cared for?

	Nearly 100 million Americans have one or more chronic conditions. 33
	An estimated 12.8 million Americans of all ages need assistance from others to carry out every day activities (such as eating, dressing, bathing). Of those, about 57% are aged 65 and older (7.3 million); 40% are working-age adults aged 18-64 (5.1 million); and 3% are children under age 18 (400 thousand). 6
	Between 10.3 and 14.7 million Americans age 18 and over are afflicted with adult-onset brain disorders1.2 to 1.8 million of these adults reside in California. 7

Who Are the Caregivers?

	85% of all home care is provided by family members and friends; 71% of all long-term care is provided in the community. Only 14% of home care is rendered by paid providers. 6
	About 70% of all caregivers are married. However, female caregivers are twice as likely as their male counterparts to be widowed. 8

Age and Gender

	The average age of a caregiver is 57 years old, however, one quarter are between 65 and 75 years of age and another 10% are 75 and older. 10
	One recent national survey found the average caregiver of a loved one 50 years and older to be 46 years of age. 31
	Approximately 72% of caregivers are female. 10
	When considering family caregivers who live with the care recipient, about 53% of primary caregivers (those with the principal responsibility to provide care for a family member) and 45% of secondary caregivers are female. 4

Ethnicity

	Research suggests that for African-American and Latino families, adult children comprise about 75% of caregivers compared to 40% to 60% in white families. 48
	A recent survey indicates that caregiving may be more prevalent in non-white families ranging from 32% of Asian families to 29% for African Americans and 27% for Latinos compared to 24% for white families. 31

Kin relationship

	85% of care recipients are relatives of the caregiver. 9
	Approximately 23% of caregivers are the wives of the care recipient while 13% are husbands, 29% are daughters, and 9% are sons. 10
	In a national sample of caregivers who live with their care recipient, spouses accounted for about 62% of primary caregivers while adult children comprised 26%. Secondary caregivers were more likely to be adult children (46%) than spouses (16%). 4
	One-third of primary caregivers assume the role because they live closer to the care recipient than other family members. 1

Working caregivers

	An estimated 14.4 million full- and part-time workers are balancing caregiving and job responsibilities. 36
	About one-third to nearly two-thirds of family caregivers are employed outside the home. 8,9,10,11
	Between 7.4% to 11.8% of the workforce is involved in providing care for an older person. 35
	33% of full-time employees and 37% of part-time workers have lost time from work due to caregiving responsibilities. In addition, 15% of caregivers previously employed chose early retirement and 12% reported giving up work entirely while they were helping their older relative. 9
	In California, over half (53%) of family caregivers under the age of 65those most likely to be in the labor force—juggle work and caregiving responsibilities. 18% of not-employed caregivers of brain-impaired adults had quit their jobs in order to provide care for their family member. Another 42% reduced their work hours in the previous year to provide care for their relative. 30

The "Sandwich Generation"

	Between 20% and 40% of caregivers have children under age 18 to care for in addition to their disabled relative. 1, 10, 12
	About 60% of adult child caregivers live with their disabled parent and 20% of all adult child caregivers have both their disabled parent and at least one child under the age of 18 living in their home. 10

How long are they caregivers?

	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. 10
	The average woman can expect to spend 17 years caring for a child and 18 years caring for an elderly parent. 13

Time spent caregiving

	80% of caregivers provide unpaid assistance 7 days a week. 10
	On average, caregivers provide personal care assistance and household maintenance chores for 12 hours per week. 28% give care for 8 hours or less, while 36% provide help for 21 hours or more. 11% provide "constant" care. 9
	Caregivers of persons living in institutions or residential care facilities provide an average of 36 hours per month or 8.5 hours per week of care, while caregivers of community-dwelling patients provide an average of 286 hours per month or 66.5 hours per week of care. 14
	Time spent caregiving varies by type of impairment. FCA's statewide study found caregivers of cognitively impaired adults spending an average of 13 hours per day providing care—more than a full-time job outside the home. 45

Extent of caregiving duties

	About 66% of caregivers assist older persons with activities of daily living (ADLs), such as bathing or dressing. Of these, approximately 68% assist with one or more ADL: about 19% assist with one ADL, 15% with two ADLs, and 33% assist with three or more ADLs. 9
	75% of all caregivers help with grocery shopping, transportation, and housework, and about 66% prepare meals or manage finances. 50% help administer medicines. 9

Age

	An estimated 40% of all Americans who need long-term care are under age 65.6
	14 million working age adults have "severe" disabilities. 47
	About two-thirds of caregivers help aging parents or others over age 65, but the remainder care for non-elderly persons such as children, spouses, or other relatives and friends. 15
	As more elderly persons live to "old old" age, more also face chronic illnesses and disabilities. There were 33.9 million Americans age 65 and over in 1996—about 1 in every 8 Americans. By 2030, there will be about 20 million older adults, more than twice their number in 1996. 46
	22% of persons 85 years and older live in a nursing home and 45% need help with everyday activities. Those 85 and over will be the fastest growing part of the elderly population in the next century. 16

Ethnicity

No ethnic group is exempt from needing care for its disabled, ill, or elderly family members. Recent research suggests that Alzheimer's disease, which affects at least one person in five after age 75, strikes with rates undifferentiated by ethnicity. 17

Caregiver Strain

Physical Health

	5% of care receivers either are bedridden or use wheelchairs. Their need to be lifted and carried can result in muscle strain and back pain for the caregiver. 9
	16% of caregivers indicate that their health has worsened since becoming a caregiver. Caregivers are more likely than other persons of the same age to report themselves as in poor health, and they are significantly less likely than other persons to report that their health is good or excellent. 24
	About 8% of primary caregivers who live with their care recipient are themselves limited in their ADLs or require ADL assistance. 4
	Working caregivers are especially prone to headaches, weight changes, frequent anxiety, and depression. 60% report physical strain as a result of caregiving. 25, 26, 37

Mental and Emotional Effects

	Up to half of primary caregivers caring for someone with Alzheimer's develop significant psychological distress. 43
	Studies show that among caregivers, an estimated 46% 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. 27,28
	Caregivers use prescription drugs for depression, anxiety and insomnia two to three times as often as the rest of the population. 29
	Approximately 80% of workers who also have responsibilities at home for caregiving reported experiencing emotional strain as a result of caregiving, with more than 10% reporting "a great deal" of emotional strain. 26

Financial Issues

	About 76% to 80% of caregiving costs for disabled older adults at home are attributed to unpaid labor by family members. 40
	Research findings suggest that unpaid caregiver support saves the American taxpayers $33.3 billion in the cost of caring for persons with Alzheimer's alone. 41
	When the combined costs of medical, long-term care, home care and lost productivity for caregivers are totaled, the direct and indirect costs of caring for persons with Alzheimer's approaches $100 billion. 41, 44
	The value of unpaid caregiving for someone with Alzheimer's disease is about $31,000 to $35,000 per year. 41, 42
	40% of caregivers incur additional financial expenses for care-related products, services, and activities. 26% of caregivers spend up to 10% of their monthly income on caregiving; 31% have incurred bills due to travel; 24% due to special diets for the care recipient; and 25% due to telephone and utility charges. 10
	The public sector currently is financing only a small proportion of the care for people with Alzheimer's disease12.5% of the care provided to community-based care recipients and 34% to residents in skilled nursing facilities. 14
	Medicare and private insurance pay less than five percent of the nation's long-term care bill. Under the current system individuals pay almost half of all nursing home costs out-of-pocket. 6
	The aggregate costs of caregiving in terms of lost productivity from caregivers who are employed full time is an estimated $11.4 billion per year. When part-time and long-distance caregivers are considered, this rises to an annual cost of $29 billion. 36

Caregiver Assistance

	About one-half of primary caregivers provide care with no outside assistance whatsoever. 9
	Contrary to popular belief, only an estimated 10% to 20% of family caregivers use formal services through public or private agencies. 9,21,22
	Support services for caregivers, including counseling, information and on-going support, have been shown to deter institutionalization of care recipients with moderate dementia by nearly a year. 32

Notes
1. Fradkin, L.G. & Heath, A. (1992). Caregiving of Older Adults. Santa Barbara, CA: ABC-CLIO, Inc..

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

3. Otten, A. (1991). About 15% of U.S. Adults Care for I11 Relatives. Wall Street Journal, April 22, B1.

4. Kennedy, J. & 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.

5. Stone, R.I. & Kemper, P. (1989). Spouses of Disabled Elders: How Large a Constituency for Long-Term Care Reform? The Milbank Quarterly, 67:485-506.

6. U.S. General Accounting Office, Long-Term Care: Diverse, Growing Population Includes Millions of Americans of All Ages, GAO/HEHS-95-26, November 7, 1994.

7. Family Caregiver Alliance (1996). Incidence and Prevalence of the Major Causes of Adult-Onset Brain Impairment in the United States and California. San Francisco, CA.

8. Schulz, R. (1990). Theoretical Perspectives on Caregiving: Concepts, Variables, and Methods. In D.E. Biegel, & A. Blum (Eds.). Aging and Caregiving: Theory, Research, and Policy. Newbury Park, CA: Sage Publications.

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

10. Stone, R., Cafferata, G.L., & Sangl, J. (1987). Caregivers of the Frail Elderly; A National Profile. The Gerontologist, 27(5): 616-626.

11. Leadership Council of Aging Organizations (1992). Long-Term Care: A Family Crisis. Washington, DC.

12. Greenberg, J.S., Boyd, M.P., & Hale, J.F. (1992). The Caregivers Guide, For Caregivers and the Elderly. As cited by The Long-term Care Campaign (1993). What Is The Long-Term Care Campaign? Washington, DC.

13. The Long-Term-Care Campaign (1993). Women and Long-Term Care. Washington, DC.

14. Rice, D.P., Fox, P.J., Max, W., Webber, P.A., Lindeman, D.A., Hauck, W.W., & Segura, E. (1993). The Economic Burden of Alzlieimer’s Disease Care. Health Affairs, 12(2):164-176.

15. Otten, A. (1993). Role of Caregiver Pervades All Ages. Wall Street Journal, August 17, B1.

16. U.S. Bureau of the Census. Current Population Reports, Special Studies (1992). Sixty-Five Plus in America. Publications no. P-23-178. Washington, DC: U.S. Government Printing Office.

17. U.S. Department of Health and Human Services. Office of the Secretary. Administration on Aging (1992). Culture & Caregiving. Aging, (nos. 363-364):29-31.

18. Alzheimer’s Association (1993). The 1993 Alzheimer's Association National Program To Conquer Alzheimer's Disease. Chicago, IL.

19. American Heart Association (1995). 1995 Heart and Stroke Facts. Dallas, TX.

20. Sosin, D.M., Sneizek, J.E. & Thurman, D.J. (1996). Incidence of Mild and Moderate Brain Injury in the United States, 1991. Brain Injury, 10(1):47-54.

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

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

23. Clipp, E.C. & George, L.K. (1993). Dementia and Cancer: A Comparison of Spouse Caregivers. The Gerontologist, 33(4): 534-541.

24. U.S. Congress. House. Select Committee on Aging (1987). Exploding the Myths: Caregiving in America. Publication No. 99-611. Washington, DC: U.S. Government Printing Office. As cited by A.E. Scharlach, B.F. Lowe, & E.L. Schneider (1991). Elder Care and the Work Force: Blueprint for Action. Canada: Lexington Books.

25. Creedon, M.A. (1987). Issues for an Aging America: Employees and Eldercare. Bridgeport, CT: University of Bridgeport, Center for the Study of Aging.

26. Scharlach, A.E. (1988). Survey of Caregiving Employees. Los Angeles, CA: Transamerica Life Companies. Cited in A.E. Scharlach, B.F. Lowe, & E.L. Schneider, (1991). Elder Care and the Work Force: Blue-print for Action. Canada: Lexington Books.

27. Gallagher, D. Rose, J., Rivera, P., Lovett, S., & Thompson, L (1989). Prevalence of Depression in Family Caregivers. The Gerontologist, 29(4):449-456.

28. Cohen, D., Luchins, D., Eisdorfer, C., Paveza, G., Ashford, J., Gorelick, P., Hirschman, R., Freels. S,. Levy, P., Semia, T., & 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, 1(3), 171-82.

29. George, L.K., & 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., & Schneider, E.L. (1991). Elder Care and the Work Force: Blueprint for Action. Canada: Lexinton Books.

30. Family Caregiver Alliance (1997). Annual Report:California’s Caregiver Resource Center System Fiscal Year 1996-97, San Francisco, CA: Family Caregiver Alliance, March 1998.

31. National Alliance for Caregiving and the American Association for Retired Persons (AARP). Family Caregiving in the U.S.:Findings From a National Survey, June 1997.

32. 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, 276(21):1725-1731.

33. Hoffman, C., Rice D.A. & Sun, H.Y. (1996). Persons With Chronic Conditions:Their Prevalence and Costs. Journal of the American Medical Association; 276(18):1473-1479.

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

35. Goey, C.M., Rice, R.R. & Brace, G.C. (1992). The Prevalence of Elder Care Responsibilities Among the Workforce Population. Research on Aging, 14:399-417.

36. Metropolitan Life Insurance Company (1997). The Met Life Study of Employer Costs for Working Caregivers. Westport, CT:MetLife Mature Market Group, June 1997.

37. Fredman, L. & Daly, M.P. (1997). Weight Change:An Indicator of Caregiver Stress. Journal of Health & Aging, 9(1): 43-69.

38. Redinbaugh, E.M., MacCallum, R.C. & Kiecolt-Glaser, J.K. (1995). Recurrent Syndromal Depression in Caregivers. Psychology & Aging 10(3): 358-368.

39. Stommel, M., Collins, C. & Given, B.A. (1994). The Costs of Family Contributions to the Care of Persons With Dementia. The Gerontologist, 34(2):199-205.

40. Harrow, B.S., Tennestedt, S.L. & McKinlay, J.B. (1995). How Costly Is It to Care for Disabled Elders in a Community Setting? The Gerontologist, 35(6):803-813.

41. Ernest, R.L. & Hay, J.W. (1994). The U.S. Economic and Social Costs of Alzheimer’s Disease Revisited. American Journal of Public Health, 84(8):1261-1264.
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42. Max, W., Webber, P. & Fox, P. (1995). Alzheimer's Disease:The Unpaid Burden of Caring. Journal of Aging of Health 7(2):179-199.

43. Shultz, R., O'Brien, A.T., Bookwala, J. & Fleissner, K. (1995). Psychiatric and Physical Morbidity Effects of Dementia Caregiving: Prevalence, Correlates, and Causes. The Gerontologist, 35:771-791. Ascited in G. Small, et al. (1997). Diagnosis and Treatment of Alzheimer Disease and Related Disorders. Journal of the American Medical Association, 278(16):1363-1371.

44. National Institute on Aging (1996). Progress Report on Alzheimer's Disease 1996. Bethesda, MD:National Institute on Aging, NIH Publication 96-4137. As cited in G. Small et al. (1997). Diagnosis and Treatment of Alzheimer Disease and Related Disorders. Journal of the American Medical Association, 278(16):1363-1371.

45. Friss, L.R. & Whitlach, C.J. (1991). "Who's Taking Care:A Statewide Study of Family Caregivers," American Journal of Alzheimer's Care and Related Disorders and Research, 6:16-26.
46. American Association of Retired Persons (AARP) and the Administration on Aging (1997). A Profile of Older Americans. Washington, DC:AARP. PF3049(1297)D996.

47. Alliance for Health Care Reform (1997). Managed Care & Vulnerable Populations:Adults With Disabilities, Washington, DC:Alliance for Health Care Reform, November.

48. Montgomery P. (1996). The Influence of Social Context on the Caregiving Experience. In Z.S. Khachaturian & T.S. Radenbaugh (eds.) 1996. Alzheimer's Disease:Causes, Diagnosis, Treatment & Care. In CRC Press:New York, NY 313-321.

Resources

Family Caregiver Alliance
690 Market Street, Suite 600
San Francisco, CA 94104
(415) 434-3388 (800) 445-8106 (in CA)
Website: http://www.caregiver.org
E-mail: info@caregiver.org

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Provided as a supplement to House Call Physicians, PC press kit materials. For further information on House Call Physicians, PC contact Adrienne Lenhoff at Shazaaam! LLC at (248) 366-0388 or e-mail alenhoff@shazaaam.com or Melanie West at House Call Physicians, PC at (248) 559-3400.