Individuals need long-term care when a chronic condition, trauma, or illness limits their ability to carry out basic self-care tasks, called activities of daily living (ADLs), (such as bathing, dressing or eating), or instrumental activities of daily living (IADLs) (such as household chores, meal preparation, or managing money). Long-term care often involves the most intimate aspects of people’s lives—what and when they eat, personal hygiene, getting dressed, using the bathroom. Other less severe long-term care needs may involve household tasks such as preparing meals or using the telephone.
A report prepared by the U.S. Senate Special Committee on Aging (February, 2000) described long-term care as follows:
It [long-term care] differs from other types of health care in that the goal of long-term care is not to cure an illness, but to allow an individual to attain and maintain an optimal level of functioning….
Long-term care encompasses a wide array of medical, social, personal, and supportive and specialized housing services needed by individuals who have lost some capacity for self-care because of a chronic illness or disabling condition.
Because long-term care needs and services are wide-ranging and complex, statistics may vary from study to study. Sources for the following information are cited at the conclusion of this Fact Sheet. For additional information, see the Family Caregiver Alliance Fact Sheet on Selected Caregiving Statistics.
Annually 8,357,100 people receive support from the 5 main long-term care service; home health agencies (4,742,500), nursing homes (1,383,700), hospices (1,244,500), residential care communities (713,300) and adult day service centers (273,200).1[Updated February 2015]
An estimated 12 million Americans needed long-term care in 2007.2 [Updated February 2015]
Informal caregiver and family caregiver are terms used to refer to unpaid individuals such as family members, partners, friends and neighbors who provide care. These persons can be primary (i.e. the person who spends the most time helping) 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.15,16
Estimates vary on the number of family and informal caregivers in the U.S., depending on the definitions used for both caregiver and care recipient as well as types of care provided.
1 Center for Disease Control and Prevention (2013) Long- Term Care Services. Retrieved (January 2015) from http://www.cdc.gov/nchs/data/nsltcp/long_term_care_services_2013.pdf
2 Center for American Progress (2007) Caring about Long-Term Care. Retrieved (January 2015) from http://cdn.americanprogress.org/wpcontent/uploads/issues/2007/07/pdf/caregiving_report.pdf
3 Rogers, S., & H. Komisar. Who needs long-term care? Fact Sheet, Long-Term Care Financing Project. Washington, DC: Georgetown University Press, 2003
4 AARP. Beyond 50.2003: A Report to the Nation on Independent Living and Disability, 2003, <http://www.aarp.org/research/health/disabilities/aresearch-import-753.html> (11 Jan 2005).
5 U.S. Department of Health and Human Services, and U.S. Department of Labor. The future supply of long-term care workers in relation to the aging baby boom generation: Report to Congress. Washington, DC: Office of the Assistant Secretary for Planning and Evaluation, (2003). <http:aspe.hhs.gov/daltcp/reports/ltcwork.htm> (20 Jan 2005)
6 The Henry J. Kaiser Foundation. Long-term Care: Medicaid’s role and challenges [Publication #2172]. Washington, DC: Author, 1999.
7 Administration on Aging (2013) Aging Statistics. Retrieved (January 2015) from http://www.aoa.gov/Aging_Statistics/Profile/2013/docs/2013_Profile.pdf
8 The Retirement Project (2007) Meeting the Long-Term Needs of the Baby boomers: How Changing Families Will Affect Paid Helpers. Retrieved (January 2015) from http://www.urban.org/UploadedPDF/311451_Meeting_Care.pdf
10 U.S. Department of Health and Human Services. The Characteristics of Long-term Care Users. Rockville: Agency for Healthcare Research and Quality, 2001.
11 Federal Interagency Forum on Aging-Related Statistics. Older Americans 2004: Key indicators of well-being, Federal Interagency Forum on Aging-Related Statistics. Washington, DC: U.S. Government Printing Office, 2004.
12 Administration on Aging (2013) Aging Statistics. Retrieved (January 2015) from http://www.aoa.gov/Aging_Statistics/Profile/2013/docs/2013_Profile.pdf
13 U.S. Census Bureau. Statistical Abstract of the United States: 2000. Washington, DC: U.S. Census Bureau, 2000, <http://www.census.gov/prod/2004pubs/
04statab/pop.pdf> (11 Jan 2005)
14 The number is extrapolated by applying projected population estimates in 2050 to prevalence estimates of moderate to severe memory impairments in 2002.
15 Fradkin, L.G., and A. Heath. Caregiving of older adults. Santa Barbara, CA: ABC-CLIO, Inc., 1992.
16 McConnell, S., J.A. Riggs. A public policy agenda: Supporting family caregiving, in M. A. Cantor (Ed.) Family Caregiving: Agenda for the Future. San Francisco: American Society on Aging, 1994.
17 National Alliance for Caregiving and AARP (2009) Caregiving in the U.S, National Alliance for Caregiving, Washington D.C .
18 Coughlin, J. (2010) Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes and Insights in Health Management, Vol 2: Issue 1.
19 Alzheimer's Association (2011) Alzheimer's Disease Facts and Figures, Alzheimer's and Dementia. Vol. 7, Issue 2.
20 Arno, P. S., Well Being of Caregivers: The Economic Issues of Caregivers, in T. McRae (Chair), New Caregiver Research. Symposium conducted at the annual meeting of the American Association of Geriatric Psychiatry. Orlando, FL. Data from 1987/1988 National Survey of Families and Households (NSFH), 2002.
21 Spector, W. D. et al. The characteristics of long-term care users (AHRQ Publication No. 00-0049). Rockville: Agency for Healthcare Research and Policy, 2000.
22 See note 17 above.
23 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.
24 Alzheimer’s Association and National Alliance for Caregiving. Families care: Alzheimer’s caregiving in the United States 2004. Washington, DC: Author, 2004.
25 National Alliance for Caregiving and AARP. Family caregiving in the U.S.: Findings from a national survey. Washington, DC: Author, 1997.
26 Doty, P. (2010) The Evolving Balance of Formal and Informal, Institutional and non-Institutional Long-Term Care for Older Americans: a Thirty- Year Perspective. Public Policy & Aging Report 20, no.1
27 Data based on analysis of data from the 1994 and 1995 National Health Interview Surveys on Disability by Health Policy Institute, Georgetown University.
28 See note 11 above.
29 See note 8 above.
30 AARP Public Policy Institute (2011) Valuing the Invaluable. http://assets.aarp.org/rgcenter/ppi/ltc/i51-caregiving.pdf.
31 Congressional Budget Office (2013) Rising Demand for Long-Term Services and Supports for Elderly People. http://www.cbo.gov/sites/default/files/44363-LTC.pdf
32 LaPlante, M.P., C. Harrington, and T. Kang. 2002. Estimating paid and unpaid hours of personal assistance services in activities of daily living provided to adults living at home. Home Services Research 327(2), 397-415.
34 See note 11 above.
35 Mollica, R. State Assisted Living Policy: 2002. Portland: National Academy for State Health Policy, 2002.
36 Hawes, R. M., & C.D. Phillips. A National Study of Assisted Living for the Frail Elderly: Results of a national survey of facilities. Beachwood: Myers Research Institute, 1999.
37Congressional Budget Office (2013) http://www.cbo.gov/sites/default/files/44363-LTC.pdf
38The Henry j. Kaiser Family Foundation (2011)Number of Nursing Facility Residents. Retrieved (January 2015) from http://kff.org/other/state-indicator/number-of-nursing-facility-residents/.
39Congressional Budget Office (2013) http://www.cbo.gov/sites/default/files/44363-LTC.pdf
40 National Center for Health Statistics. Health, United States, 2000. Hyattsville: U.S. Department of Health and Human Services, 2000.
41 See note 11 above.
42National Health Policy Forum (2014) The Basics: National Spending for Long-Term Services and Supports. Retrieved (January 2015) from http://www.nhpf.org/library/the-basics/Basics_LTSS_03-27-14.pdf
43The SCAN Foundation (2013) http://www.thescanfoundation.org/sites/thescanfoundation.org/files/who_pays_for_ltc_us_jan_2013_fs.pdf
44AARP Public Policy Institute (2011) Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving
45 Doty, P. Cost-effectiveness of Home and Community-based Long-term Care Services. Washington, DC: U.S. Department of Health and Human Services: Office of Disability, Aging and Long-Term Care Policy, 2000.
46 O’Brian, E., and R. Elias. Medicaid and long-term care. Washington, DC: Kaiser Commission on Medicaid and the Uninsured, (2004, May) <http://www.kff.org/
PageID=36296> (10 Jan 2004)
47 U.S. General Accounting Office. 2002. Aging Baby Boom Generation Will Increase Demand and Burden on Federal and State budgets [GAO-02-544T]. <http://www.gao.gov/new.items/d02544t.pdf> (10 Jan 2004)
48 Burwell, B., K. Sredl, and S. Eiken. Medicaid long-term care expenditures in FY 2003[Addendum]. Cambridge: The Medstat Group, 2004.
49 See note 45 above.
50 National Association for Home Care. Basic Statistics about Home Care. Washington, DC: Author. Findings based on Centers for Medicare and Medicaid Services, MSIS, 2004.
51 See note 30 above.
52 Kassner, E. Medicaid and Long-Term Services and Supports for Older People: Fact Sheet. Washington, DC: AARP Public Policy Institute, 2005.
53 Miller, N.A., C. Harrington, E. Goldstein. 2002. Access to community-based long-term care: Medicaid’s role. Journal of Aging and Health Volume 14, No. 1: 138-59.
54 Metlife Market Survey of Nursing Home and Home Care Costs, 2004.
55 See note 30 above.
56 Hoffman, C., D. Rice and H.Y. Sung. 1996. Persons with Chronic Conditions: Their Prevalence and Costs. JAMA 276 (18), 1473-1479.
57 Niefield, M., E. O’Brien, and J. Feder. Long-term care: Medicaid’s role and challenges. Washington, DC: Kaiser Commission on Medicaid and the Uninsured, 1999.
58 AARP. (2009) Perceptions of Long-Term Care and the Economic Recession. Retrieved (January 2015) from http://assets.aarp.org/ rgcenter/il/bulletin_ltc_09.pdf
59VanDerhei, J., and C. Copeland. Can America Afford Tomorrow’s Retirees: Results from the EBRI-ERF retirement security projection model [Issue brief # 263]. Washington DC: Employee Benefit Research Institute, 2003.
60 O’Brian, E., and R. Elias. Medicaid and long-term care. Washington, DC: Kaiser Commission on Medicaid and the Uninsured, 2004. <http://www.kff.org/medicaid/loader.cfm?url=/commonspot/
security/getfile.cfm&PageID=36296> (10 Jan 2004)
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.
Through its National Center on Caregiving, FCA offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.
For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, brain injury, Parkinson’s and other debilitating cognitive disorders that strike adults.
Prepared by Family Caregiver Alliance in cooperation with California’s Caregiver Resource Centers and funded by the California Department of Mental Health. Original reviewed by Robert B. Friedland, Ph.D., Center on an Aging Society, Georgetown University. © 2001 Family Caregiver Alliance. Revised 2005. All rights reserved. FS-SLTC200506