A Brief Introduction to Long-Term Care

In its 2015 World Report on Ageing and Health, the World Health Organization defined long-term care as encompassing “activities undertaken by others to ensure that those with a significant ongoing loss of physical or mental capacity can maintain a level of ability to be and to do what they have reason to value; consistent with their basic rights, fundamental freedoms and human dignity.”[1]  According to the National Institute on Aging (“NIA”), “[l]ong-term care involves a variety of services designed to meet a person’s health or personal care needs during a short or long period of time … [and] help people live as independently and safely as possible when they can no longer perform everyday activities on their own”.[2]  While the NIA explained that the most common type of long-term care is personal care, assisting with the “activities of daily living” (e.g., bathing, dressing, grooming, using the toilet, eating, taking medications and moving around safely), the scope of services is often much broader and includes community services such as meals, adult day care and transportation services. 

Long-term care can be provided in a number of places and by different groups of caregivers ranging from care in the home from unpaid family members and friends (mostly female), which is the most common form of long-term care; home-based services provided by paid caregivers, including caregivers found informally or through home health care agencies and healthcare professionals (i.e., nurses, home health care aides and therapists)[3]; and services provided by health and care professionals in institutional settings such as nursing homes or community-based adult day centers.  In general, most older persons around the world are able to live independently or with minimal assistance from their communities; however, many of them require assistance in performing daily activities as they age into their 80s and beyond and their physical and cognitive abilities begin to deteriorate.  For these people, assistance is often provided by family members (generally women), neighbors, friends and local organizations while he or she remains in a home setting, but when the level of support required exceeds the resources and skills of these parties, persons in industrialized countries may move to a nursing home or other type of long-term care facility.  The need for long-term care can arise suddenly, such as when a person has a heart attack or a stroke, or may develop over an extended period of time as a person’s physical or mental capacities begin to deteriorate due to aging, illness or disability.[4]  The timing and intensity of the need for long-term care services will depend on a person’s social and economic experiences over his or her lifetime and the quality of health care that he or she has been able to access and receive.[5] 

Caregiving for older persons is an important issue, regardless of how and where the care is provided, since the data shows that the global population over age 65 will more than double over the next three decades, and steps need to be taken to determine the best means to fund and otherwise support the services that will be needed to maintain the physical and mental wellbeing of the most vulnerable members of this group.  Global multilateral institutions, such as the International Labour Organization, have declared that the universal human rights of social security and health care should also include the right to long-term care, thus placing the onus on governments to take the steps necessary, financially and otherwise, to provide a comprehensive long-term framework inside their borders.  However, the reality has been that “[i]n every country, to differing degrees, the underlying question of who is responsible for the provision of and financing of care for older persons is a negotiated balance that involves issues of cultural expectations and the specific political and social environment, as well as availability of funding”.[6]  According to the UN Department of Economic and Social Affairs (“DESA”), the global average public expenditure on long-term care is less than 1% of GDP, with the highest rates being found in Europe (although commitments vary significantly from 2% in the Netherlands and Norway to 0% in Slovakia) and rates in North America being 1.2% in the US and 0.6% in Canada.[7]

DESA has noted that “[w]ith increasing age and longevity, the risk of chronic disease rises along with that of age-related disabilities from chronic diseases such as pulmonary disease and diabetes to age-related loss of hearing, sight and movement (arthritis), cognitive illnesses such as dementia and Alzheimer’s to injuries from falls”, all of which leads to a significant increase in the need for long-term care for those aged 80 and over (a group that is projected to increase in size to 434 million worldwide by 2050, up from 125 million in 2015), particularly older women who live longer than men.[8]  States must plan for addressing and managing the coming surge in demand for long-term care services including allocating resources to improving healthcare services during the earlier stages of the life course in order to delay or mitigate the issues of disease and disability that compromise the ability of older persons to live without assistance.[9]

DESA explained that there are a handful of countries that have implemented mandatory public long-term care insurance systems including Germany, Japan, the Republic of Korea, Luxembourg and the Netherlands, and in each of these countries adjustments are made periodically to benefits and premiums to ensure that the system remains sustainable.  In most countries, however, older persons seeking government assistance in underwriting the costs of formal care services, either at home or in an institutional setting, must first tap into their own savings and liquidate their assets until the reach the point at which they would satisfy the rules for qualifying for government support.  Given their shortage of financial resources governments must prioritize how their funds are spent, which generally means that individuals and their families must still bear most of the costs of “social” care in support of the basic activities of daily living.  Private insurance is available for certain long-term care services, but the market is limited (in fact, insurers are cutting back on offering long-term care products) and the costs are prohibitive for most prospective customers.[10]  In some countries, shortages of accessible and affordable long-term care have led to reports of inappropriate use of acute care hospital and emergency room services for care of older persons that should be provided in a different manner, a situation that increases costs and compromises care for other patients who need those services.[11]

In the US, understanding federal and state support for long-term care requires examination of existing Medicare and Medicaid programs.[12]  In nursing homes, Medicare pays only for rehabilitation services up to a maximum of 100 days and does not provide support for long-term stays in nursing homes or assisted living facilities.  Outside of nursing homes, Medicare coverage of home health is limited to older adults and people with severe disabilities who are homebound and need skilled services from nurses and therapists.  Medicare did not pay for most of the home health services that were received by Medicare’s 3.4 million members in 2018 including 24-hour care or care from homemakers and personal aides.  Medicaid, which is a federal-state program covering 72 million children and adults, is limited to services to beneficiaries in low-income households (i.e., people who meet strict financial eligibility criteria including minimal income and asset levels).  Medicaid does provide support to both institutional care facilities such as nursing homes and home and community-based services; however, the federal government only mandates institutional care and the use of Medicaid funds for home and community-based services is based on the discretion of each of the states. 

Experts have complained that there has been a bias towards institutions in how governmental support for long-term care has been allocated—people can get certain services if they are in nursing homes but not if they are still living in their communities, even though their basic needs are the same in each situation; however, the percentage of Medicaid resources used to fund long-term services and support in homes and communities did increase from 20% in the early 2000s to 56% by 2018 and provided assistance to an estimated 4 million to 5 million people.[13]  Nonetheless, half of the states still spend twice as much on institutional care in comparison to community care and the demand for Medicare-supported community care far exceeds supply, as can be seen from the fact that nearly 820,000 people sit on waiting lists in 41 states for average waiting periods of 39 months.[14]  The American Rescue Act, which was proposed by the Biden Administration and passed by Congress in early 2021, increased the federal share of states’ Medicare spending on home and community-based services, which was anticipated to lead to an expansion of rehabilitative services outside of institutions including personal care, health care and transportation.[15] Demand for long-term care in institutional settings declined sharply during the Covid-19 pandemic according to data compiled by the National Investment Center for Seniors Housing & Care that showed that the occupancy rate in nursing homes in the fourth quarter of 2020 was 75%, a decline of 11% in comparison to the first quarter of the year, with the dip being explained by a combination of deaths from the virus and a steep drop in elective surgeries that would normally require follow-up care in a skilled nursing facility.[16]  It is expected that Americans’ demand for senior care facilities will continue to fall even after the pandemic has passed; however, building support for older persons to have more opportunities to remain at home will require systemic changes.[17]

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[1] World Report on Ageing and Health (Geneva: World Health Organization, 2015).

[2] What Is Long-Term Care? (National Institute on Aging)

[3] Home health care services may be ordered by a physician after surgery, an accident or illness and may include nursing care; physical, occupational or speech therapy and temporary home health aide services provided through home health care agencies approved by Medicare, which will cover the costs of such services subject to various limits.  Id.  Informal paid care is not covered by Medicare and is generally unregulated and provided by caregivers who lack comprehensive training and labor under poor wages and without benefits.  Informal paid care is typically an “out-of-pocket” expense for patients and their families, although private insurance with multiple restrictions and limitations is available, albeit costly.  The Growing Need for Long-Term Care: Assumptions and Realities (UN Department of Economic and Social Affairs), 1.

[4] The NIA identified several risk factors relating to the likelihood of need for long-term care including age, gender (i.e., women are at higher risk than men, primarily because they generally live longer), marital status (i.e., single people are more likely than married people to need care from a paid caregiver), lifestyle (i.e., persons with poor diets and exercise habits are more likely to need long-term care) and health and family history.

[5] The Growing Need for Long-Term Care: Assumptions and Realities (UN Department of Economic and Social Affairs), 1.

[6] Id. at 5.

[7] Id. at 6.

[8] Id. at 1 (citing United Nations General Assembly, Report of the Secretary-General on follow-up to the Second World Assembly on Ageing, 26 July 2012 (A/67/188)).

[9] Id. at 2.

[10] Id. at 6.

[11] Id. at 3 (citing D. Campbell, “NHS hospitals face record level of ‘bed blocking’”, Guardian (January 24, 2014).

[12] The summary in this paragraph is adapted from J. Graham, “Biden’s $400 Billion Plan for Long-Term Care”, Next Avenue (April 15, 2021).

[13] J. Graham, “Biden’s $400 Billion Plan for Long-Term Care”, Next Avenue (April 15, 2021) and M. Miller, “Turning Away From Nursing Homes”, The New York Times (April 4, 2021), BU-8. 

[14] Id.  See also E. Porter, “Tug of War to Shore Up Elder Care”, The New York Times (April 15, 2021), B4 (noting that there is a wide divergence among the states as to which services will be covered from their Medicare budgets and how eligibility will be determined).

[15] M. Miller, “Turning Away From Nursing Homes”, The New York Times (April 4, 2021), BU-8.

[16] Id.

[17] Id.