Long-term care (LTC) is a variety of services which help meet both the medical and non-medical needs of people with a chronic illness or disability who cannot care for themselves for long periods of time.
It is common for long-term care to provide custodial and non-skilled care, such as assisting with normal daily tasks like dressing, and using the bathroom. Increasingly, long-term care involves providing a level of medical care that requires the expertise of skilled practitioners to address the often multiple chronic conditions associated with older populations. Long-term care can be provided at home, in the community, in assisted living facilities or in nursing homes. Long-term care may be needed by people of any age, although it is a more common need for senior citizens.
Types of long-term care
Long-term care can be provided formally or informally. Facilities that offer formal LTC services typically provide living accommodation for people who require on-site delivery of around-the-clock supervised care, including professional health services, personal care and services such as meals, laundry and housekeeping. These facilities may go under various names, such as nursing home, personal care facility, residential continuing care facility, etc. and are operated by different providers.
While the government has been asked with the LTC (Long term care) industry not to bundle health, personal care and services (e.g., meal, laundry, housekeeping) into large facilities, the US government continues to approve that as the primary use of taxpayers' funds instead (e.g., new assisted living). Greater success has been achieved in areas such as supported housing which may still utilize older housing complexes or buildings, or may have been part of new federal-state initiatives in the 2000s.
Long-term care provided formally in the home, also known as home health care, can incorporate a wide range of clinical services (e.g. nursing, drug therapy, physical therapy) and other activities such as physical construction (e.g. installing hydraulic lifts, renovating bathrooms and kitchens). These services are usually ordered by a physician or other professional. Depending on the country and nature of the health and social care system, some of the costs of these services may be covered by health insurance or long-term care insurance.
Modernized forms of long term services and supports (LTSS), reimbursable by the government, are user-directed personal services, family-directed options, independent living services, benefits counseling, mental health companion services, family education, and even self-advocacy and employment, among others. In home services can be provided by personnel other than nurses and therapists, who do not install lifts, and belong to the long-term services and supports (LTSS) systems of the US.
Informal long-term home care is care and support provided by family members, friends and other unpaid volunteers. It is estimated that 90% of all home care is provided informally by a loved one without compensation and in 2015, families are seeking compensation from their government for caregiving.
Long Term Services and Supports (LTSS)
Long-term services and supports (LTSS) are the modernized term for community services, which may obtain health care financing (e.g., home and community-based Medicaid waiver services), and may or may not be operated by the traditional hospital-medical system (e.g., physicians, nurses, nurse's aides).
The Consortium of Citizens with Disabilities (CCD)  which works with the U. S. Congress, has indicated that while hospitals offer acute care, many non-acute, long-term services are provided to assist individuals to live and participate in the community. An example is the group home international emblem of community living and deinstitutionalization, and the variety of supportive services (e.g., supported housing, supported employment, supported living, family support).
The term is also common with aging groups, such as the American Association of Retired Persons (AARP), which annually surveys the US states on services for elders (e.g., intermediate care facilities, assisted living, home-delivered meals). Long term services and supports are discussed in depth in the forthcoming, Public Administration and Disability: Community Services Administration in the US (Racino, in press, 2014)  The new US Support Workforce includes the Direct Support Professional, which is largely non or for-profit, and the governmental workforces, often unionized, in the communities in US states.
Needs for long-term care
Life expectancy is going up in most countries, meaning more and more people are living longer and entering an age when they may need care. Meanwhile birth rates are generally falling. Globally, 70 percent of all older people now live in low or middle-income countries. Countries and health care systems need to find innovative and sustainable ways to cope with the demographic shift. As reported by John Beard, director of the World Health Organization's Department of Ageing and Life Course, "With the rapid ageing of populations, finding the right model for long-term care becomes more and more urgent."
The demographic shift is also being accompanied by changing social patterns, including smaller families, different residential patterns and increased female labour force participation. These factors often contribute to an increased need for paid care.
In many countries, the largest percentages of older persons needing LTC services still rely on informal home care, or services provided by unpaid caregivers (usually nonprofessional family members, friends or other volunteers). Estimates from the OECD of these figures often are in the 80 to 90 percent range; for example, in Austria, 80 percent of all older citizens. The similar figure for dependent elders in Spain is 82.2 percent.
The US Centers for Medicare and Medicaid Services estimates that about 9 million American men and women over the age of 65 needed long-term care in 2006, with the number expected to jump to 12 million by 2020. It is anticipated that most will be cared for at home; family and friends are the sole caregivers for 70 percent of the elderly. A study by the U.S. Department of Health and Human Services says that four out of every ten people who reach age 65 will enter a nursing home at some point in their lives. About 10 percent of the people who enter a nursing home will stay there five years or more.
Long-term care costs
A recent analysis indicates that Americans spent $119 billion on long-term care services for the elderly in 2009. Nursing home spending accounts for the majority of long-term care expenditures, but home and community based care expenditures have increased over the past 25 years.
In 2012, the average annual cost of nursing home care in the United States was $81,030 for a semi-private room. The average annual cost for assisted living was $42,600. Home health aides were paid on average $21 per hour and homemaker services averaged about $20 per hour. The average cost of a nursing home for one year is more than the typical family has saved for retirement in a 401(k) or an IRA. As of 2014, 26 states have contracts with managed care organizations (MCO) to deliver long-term care for the elderly and individuals with disabilities. The states pay a monthly capitated rate per member to the MCOs that provide comprehensive care and accept the risk of managing total costs.
When the percentage of elderly individuals in the population rises to nearly 14% in 2040 as predicted, a huge strain will be put on caregivers' finances as well as continuing care retirement facilities and nursing homes because demand will increase dramatically.
Long-term care funding
Governments around the world have responded to growing long-term care needs to different degrees and at different levels.
Most Western European countries have put in place a mechanism to fund formal care and, in a number of Northern and Continental European countries, arrangements exist to at least partially fund informal care as well. Some countries have had publicly organized funding arrangements in place for many years: the Netherlands adopted the Exceptional Medical Expenses Act (ABWZ) in 1967, and in 1988 Norway established a framework for municipal payments to informal caregivers (in certain instances making them municipal employees). Other countries have only recently put in place comprehensive national programs: in 2004, for example, France set up a specific insurance fund for dependent older people. Some countries (Spain and Italy in Southern Europe, Poland and Hungary in Central Europe) have not yet established comprehensive national programs, relying on informal caregivers combined with a fragmented mix of formal services that varies in quality and by location.
In the 1980s, some Nordic countries began making payments to informal caregivers, with Norway and Denmark allowing relatives and neighbors who were providing regular home care to become municipal employees, complete with regular pension benefits. In Finland, informal caregivers received a fixed fee from municipalities as well as pension payments. In the 1990s, a number of countries with social health insurance (Austria in 1994, Germany in 1996, Luxembourg in 1999) began providing a cash payment to service recipients, who could then use those funds to pay informal caregivers.
In Germany, funding for long-term care is covered through a mandatory insurance scheme (or Pflegeversicherung), with contributions divided equally between the insured and their employers. The scheme covers the care needs of people who as a consequence of illness or disability are unable to live independently for a period of at least six months. Most beneficiaries stay at home (69%). The country's LTC fund may also make pension contributions if an informal caregiver works more than 14 hours per week.
In Canada, facility-based long-term care is not publicly insured under the Canada Health Act in the same way as hospital and physician services. Funding for LTC facilities is governed by the provinces and territories, which varies across the country in terms of the range of services offered and the cost coverage.
Long-term care is typically funded using a combination of sources including but not limited to family members, Medicaid, long-term care insurance and Medicare. One of these includes out-of-pocket spending, which often becomes exhausted once an individual requires more medical attention throughout the aging process and might need in-home care or be admitted into a nursing home. For many people, out-of-pocket spending for long-term care is a transitional state before eventually needing Medicaid coverage. Personal savings can be difficult to manage and budget and often deplete rapidly. In addition to personal savings, individuals can also rely on an Individual retirement account, Roth IRA, Pension, Severance package or the funds of family members. These are essentially retirement packages that become available to the individual once certain requirements have been met.
In 2008, Medicaid and Medicare accounted for approximately 71% of national long-term care spending in the United States. Out-of-pocket spending accounted for 18% of national long-term care spending, private long-term care insurance accounted for 7%, and other organizations and agencies accounted for the remaining expenses. Moreover, 67% of all nursing home residents used Medicaid as their primary source of payment.
Currently, Medicaid is one of the dominant players in the nation’s long-term care market because there is a failure of private insurance and Medicare to pay for expensive long-term care services, such as nursing homes. For instance, 34% of Medicaid was spent on long-term care services in 2002.
Medicaid operates as distinct programs which involve home and community-based (Medicaid) waivers designed for special population groups during deinstitutionalization then to community, direct medical services for individuals who meet low income guidelines (held stable with the new Affordable Care Act Health Care Exchanges), facility development programs (e.g., intermediate care facilities for intellectual and developmental disabilities populations), and additional reimbursements for specified services or beds in facilities (e.g., over 63% beds in nursing facilities). Medicaid also fund traditional home health services and is payor of adult day care services. Currently, the US Centers for Medicaid and Medicare also have a user-directed option of services previously part of grey market industry.
In the US, Medicaid is a government program that will pay for certain health services and nursing home care for older people (once their assets are depleted). In most states, Medicaid also pays for some long-term care services at home and in the community. Eligibility and covered services vary from state to state. Most often, eligibility is based on income and personal resources. Individuals eligible for Medicaid are eligible for community services, such as home health, but governments have not adequately funded this option for elders who wish to remain in their homes after extended illness aging in place, and Medicaid's expenses are primarily concentrated on nursing home care operated by the hospital-nursing industry in the US.
Generally, Medicare does not pay for long-term care. Medicare pays only for medically necessary skilled nursing facility or home health care. However, certain conditions must be met for Medicare to pay for even those types of care. The services must be ordered by a doctor and tend to be rehabilatative in nature. Medicare specifically will not pay for custodial and non-skilled care. Medicare will typically cover only 100 skilled nursing days following a 3 day admission to a hospital.
A 2006 study conducted by AARP found that most Americans are unaware of the costs associated with long-term care and overestimate the amount that government programs such as Medicare will pay. The US government plans for individuals to have care from family, similar to Depression days; however, AARP reports annually on the Long-term services and supports (LTSS)  for aging in the US including home-delivered meals (from senior center sites) and its advocacy for caregiving payments to family caregivers.
Long-term care insurance protects individuals from asset depletion and includes a range of benefits with varying lengths of time. This type of insurance is designed to protect policyholders from the costs of long-term care services, and policies are determined using an "experience rating" and charge higher premiums for higher-risk individuals who have a greater chance of becoming ill.
Unfortunately, government funded aid meant for long-term care recipients are sometimes misused. A news story published in The New York Times explains how some of the businesses offering long-term care are misusing the loopholes in the newly redesigned New York Medicaid program. Government resists progressive oversight which involves continuing education requirements, community services administration with quality of life indicators, evidence-based services, and leadership in use of federal and state funds for the benefit of individual and their family.
- Activities of daily living
- Yung-Ping Chen, advocate for using Social Security to fund long-term care.
- Assisted living
- Caregiving and dementia
- Certified Medical Director
- Dynamic treatment regimes
- Geriatric care management
- Home care
- Long-term care insurance
- Options counseling
- List of companies operating nursing homes in the United States
- Transgenerational design
- "Defusing the demographic "time-bomb" in Germany." Bull World Health Organ 2012;90:6–7 | doi:10.2471/BLT.12.020112
- Health Canada. Long-Term Facilities-Based Care. Accessed 3 January 2012.
- O'Keefe, J. & Wiener, J. (2004). Public funding for long term care services for older people with residential care settings. In: J. Pynoos, P. Hollander-Feldman, & J. Ahers, Linking Housing and Services for Older Adults: Obstacles, Options and Opportunities, pp. 51-80. NY, NY: The Haworth Press.
- Saltman, R.B., Dubois, H.F.W. and Chawla, M. (2006). The impact of aging on long-term care in Europe and some potential policy responses, International Journal of Health Services, 36(4): 719-746.
- Centers for Medicare and Medicaid Services. (2011, May 5). HCBS waivers-Section 1915c. Washington, DC: Author. Retrieved in May 2011 from: http://www.cms.gov/MedicaidStWaivprogDemoPG1/05
- Kane, R. (2012). Thirty years of home and community-based services: Getting closer and cloer to home. Generations: Journal of the American Society for Aging, 1-5. Retrieved in August 2012 from: http://www.asaging.org/Blog/thirty-years-home-and-community-based
- Braddock, D. (2011). Long term care spending for disability. Disability Spending in States: 1997-2008. Boulder, CO: University of Colorado, Department of Psychiatry.
- Consortium of Citizens with Disabilities. (2014). Long-Term Services and Supports Taskforce. Washington, DC: Author.
- Johnson, K. & Traustadottir, R. (2005). Deinstitutionalization and People with Intellectual Disabilities. London, UK: Jessica Kingsley Publishers.
- Racino, J. (2014) ""Public Administration and Disability: Community Services Administration in the US."" NY, NY: CRC Press, Francis and Taylor.
- World Health Organization. Ageing and Life Course. Accessed 3 January 2012.
- London School of Economics and Political Science. Ageing and long-term care. Eurohealth 2011, 17(2–3).
- OECD (2005). Long Term Care for Older People. Paris: OECD.
- Costa-Font, J., and Patxot, C. (2005). The design of the long-term care system in Spain: Policy and financial constraints. Soc. Society 4:1, 11–20.
- U.S. Department of Health and Human Services. AHCPR Research on Long-term Care
- Kaye, H. S., Harrington, C., & LaPlante, M. P. (2010). Long-term care: who gets it, who provides it, who pays, and how much? Health Affairs, 29(1), 11-21.
- Stone, R.I., & Benson, W.F., Financing and organizing health and long term care services. In Prohaska, T. R., Anderson, L. A., & Binstock, R. H. (Eds.). (2012). Public Health for an Aging Society. Boston. Johns Hopkins University Press.
- 2012 MetLife Market Survey of Nursing Home, Assisted Living, Adult Day Services, and Home Care Costs, Metlife Mature Market Institute
- George Washington University. (2004). Retirement saving and long-term care needs: An overview. The Retirement Security Project.
- "States Turn to Managed Care To Constrain Medicaid Long-Term Care Costs". Agency for Healthcare Research and Quality. 2014-04-09. Retrieved 2014-04-14.
- Waters, R. (2009, 07 20). Elerly to Double to 14% of Global Population by 2040. http://www.bloomberg.com/apps/news?pid=newsarchive&sid=axV6K65QoAg8.
- Gale, W.G., Iwry, M., Orszag, P., Ahlstrom, A., Clements, E., Lambrew, J., Yumlinson, A. (2004) Retirement Saving and Long-Term Care Needs: An Overview.
- Lewin Group. (2010). Individuals living in the community with chronic conditions and functional limitations: A closer look. Report prepared under contract #HHS-100-95-0046 for the U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation.
- Gregory, S. R., & Gibson, M. J. (2002). Across the States: Profiles of Long-Term Services and Supports (5th ed.). Washington, DC: AARP Public Policy Institute.
- O'Brien, E., & Elias, R. (2004). Medicaid and long-term care. Kaiser Commission on Medicaid and the Uninsured, Henry J. Kaiser Family Foundation.
- Mulvey, J., & Li, A. (2002). Long Term Care Financing: Options for the Future. Benefits Quarterly, 18(2), 7-14.
- AARP Press Center. Long-term care report
- AARP. (2012). Long-Term Services and Supports in the US. Washington, DC: Author.
- Amaradio, L. (1998). Financing Long-Term Care for Elderly Persons: What Are the Options? Journal of Health Care Finance, 25(2). 75-84.
- "Requirements for States and Long Term Care Facilities". ELECTRONIC CODE OF FEDERAL REGULATIONS. U.S. Government Printing Office. Retrieved 15 May 2014.
- Bernstein, Nina (8 May 2014). "Medicaid Shift Fuels Rush for Profitable Clients". The New York Times. Retrieved 15 May 2014.
- US Government: Medicare - Long-term care.
- AMDA - Dedicated to Long Term Care Medicine
- California Partnership for Long-Term Care
- Medicare Part D Information University of Florida/IFAS Extension Department of Family, Youth and Community Sciences
- The SCAN Foundation (US-based foundation)
- Family Factors Involved in Making Long-Term Care Financing Decisions University of Florida/IFAS Extension Department of Family, Youth and Community Sciences
- Family Caregiving Financial Resources List of county/state departments or local agencies for long-term caregivers in the US
- Long Term Care Medical Directors Association of Canada - Association canadienne des directeurs médicaux en soins de longue durée Canadian-based association of medical directors in the Long Term Care setting
- How much does long term care cost?
- Latest Cost of long term care survey conducted for Genworth Financial
- Health-EU Portal Long-term Care in the EU
- Cost of care calculator for UK residents