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US: Long-Term Services & Supports

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Population, Mid-Year 2019: 329,065,000
Projected Population Mid-Year 2030: 349,642,000
Percentage of Population Under Age 25 Years, Mid-Year 2019: 32%
Percentage of Population 65 Years Or Over, Mid-Year 2019: 16%

Source: United Nations, Department of Economic and Social Affairs, Population Division (2019). World Population Prospects 2019: Data Booklet (ST/ESA/SER.A/424).


Percent of Adults Aged 65 Years and Over Reporting To Be In Good Or Very Good Health (2015): 78.1%
People With Dementia Per 1,000 Population (2017): 11.6
Projected Number of People With Dementia Per 1,000 Population in 2037: 18.6
Long-Term Care Workers Per 100 People Aged 65 And Over (2015): 12
Long-Term Care Beds In Institutions and Hospitals Per 1,000 Population Aged 65 And Over (2015): 36.8
Long-Term Care Expenditure (Health and Social Components) By Government and Compulsory Insurance Schemes, as a Share of GDP (%) (2015): 0.5%

Source: OECD (2017), Health at a Glance 2017: OECD Indicators, OECD Publishing, Paris. dx.doi.org/10.1787/health_glance-2017-en


Formal Long-Term Care Workers At Home (FTE) (2017): 614,342
Formal Long-Term Care Workers At Home (FTE) Per 100 Population Aged 65 Years and Older (2017): 1.2
Formal Long-Term Care Workers In Institutions (FTE) (2017): 952,658
Formal Long-Term Care Workers In Institutions (FTE) Per 100 Population Aged 65 Years and Older (2017): 1.9
Long-Term Care Recipients In Institutions Other Than Hospitals (2016): 1,169,898
Long-Term Care Recipients At Home (2016): 3,705,808

Source: Organization for Economic Cooperation and Development. OECD.Stat. Last accessed Nov. 4, 2019.


“Currently, much of LTSS [Long Term Support Services] is unpaid (or informal) care provided by family members and friends.”

Source: Congressional Budget Office, Key Design Components and Considerations for Establishing a Single-Payer Health Care System. May 2019.


“Contemporary elders’ unprecedentedly long lives fuel concern that they may spend a significant proportion of their lives suffering age-related diseases. A particularly burdensome disease process, both personally and economically, is pathological cognitive decline. To provide a sense of the extent of cognitive impairment, a third of people in the U.S. aged 85 and older have Alzheimer’s disease (Hebert, Weuve, Scherr, & Evans, 2013), the most common cause of pathological cognitive decline (Qian, Schweizer, Munoz, & Fischer, 2016, p. P293). Alzheimer’s disease accounts for 60–80% of dementias, is the sixth leading cause of death in the United States, and the only leading cause of death with no known prevention, efficacious treatment, or cure (Alzheimer’s Association, 2019). Dementia more broadly, which includes Alzheimer’s, Lewy body, cerebrovascular, and mixed dementias, is one of the most expensive diseases, as people with dementia can live for many years cognitively impaired and often require high levels of care (Hurd, Martorell, Delavande, Mullen, & Langa, 2013). Annual estimates for dementia costs in the U.S. in 2010 were between $159 billion and $215 billion (Hurd et al., 2013).”

Source: Hale, J. M., Schneider, D. C., Mehta, N. K., & Myrskylä, M. (2020). Cognitive impairment in the U.S.: Lifetime risk, age at onset, and years impaired. SSM – population health, 11, 100577. https://doi.org/10.1016/j.ssmph.2020.100577


“Our results show that approximately two out of three Americans experience cognitive impairment, at an average age of approximately 70 years. Women live over 7 years cognitively impaired, men over 5. The educational and racial/ethnic gradients are even larger than the gender differentials and highlight the uneven burden of cognitive impairment. A critical finding is that despite the shorter lives of disadvantaged subgroups (Black and/or lower educated), they experienced a younger age of onset and also spent more years cognitively impaired than their White, highereducated counterparts who experienced a delayed onset. Thus, the early onset does not imply a quick death after onset. A corollary is that for the most advantaged groups (i.e., White and/or higher educated), cognitive impairment is both delayed and compressed toward the very end of life. Further research is required to identify the mechanisms driving these disparities in cognitive impairment.”

Source: Hale, J. M., Schneider, D. C., Mehta, N. K., & Myrskylä, M. (2020). Cognitive impairment in the U.S.: Lifetime risk, age at onset, and years impaired. SSM – population health, 11, 100577. https://doi.org/10.1016/j.ssmph.2020.100577


“Private duty home care is an option for individuals who need ongoing nursing or custodial care and whose families have the resources to keep the patient at home. With this type of long-term care, a nurse and / or home health aide goes to the patient’s home for a prescribed period of time and frequency, anywhere from a few hours or a few days a week, to a several hours daily, to round the clock (Harvard Health Letter, 2014; NAHC, 2010). Patients can receive various homemaker services, such as housework, cooking, shopping and transportation (Harvard Health Letter, 2014). They may also receive home health aide services which involve personal care, such as help with bathing, dressing, eating, using the bathroom, walking or transferring and medications.

“Private duty home care has the advantage of allowing the patient to remain at home rather than being institutionalized. One disadvantage is that it can be difficult for family members to arrange their home and schedules to accommodate the person needing care. Another disadvantage is that it can be costly. Unless the patient also needs skilled professional care, Medicare and private health insurance will not cover homemaker or home health aide services. Medicaid may or may not cover the services (coverage is on a stateby-state basis) (Harvard Health Letter, 2014: NAHC, 2010). Long-term care insurance may cover the care. If a patient does not have insurance coverage, the family will have to pay out-of-pocket. For services of a few hours a week, the costs are significantly less than those of a nursing home and this makes private duty home care an attractive alternative to nursing home care. But as the amount of time increases, the costs become significant. At some point, nursing home care is less expensive than home care.”

Source: Rice T, Rosenau P, Unruh LY, Barnes AJ, van Ginneken E. United States of America: Health system review. Health Systems in Transition, 2020; 22(4): pp. i–441.


“This study provides national estimates of family availability for older adults with dementia and assessed the potential influence of spouse and adult child availability on informal and formal care use. It extends the dementia care literature in significant ways. Most previous studies focused on active family caregivers, which is important for assessing the burden on caregivers. However, it is essential to understand the potential care pool available to older adults with dementia to predict the type of care they will use; their transitions to institutional care; and the associated care costs for them, their families, and the public. For example, a spouse who is an active caregiver provides substantially more hours of care than an adult child who is an active caregiver. However, the majority of adults with dementia do not have a spouse. Spousal availability is especially limited among non-Hispanic Blacks and those with lower socioeconomic status, which may lead to a greater dependence on adult children for ADL care among these groups. In other words, there may be an unequal, intergenerational spillover effect in that children of some vulnerable groups defined by race, ethnicity, and economic status may incur more care responsibility and (opportunity) costs than other groups.

“Our findings from the multivariable models suggest that having a co-resident child reduces the likelihood of using formal care and transitioning to a nursing home among adults with cognitive and physical limitations. Despite the substantial care contribution of a spouse, spousal availability was not independently associated with the likelihood of subsequent formal ADL care use by adults with dementia. Primary responsibility for ADL care may be assigned sequentially, first to a spouse (if physically and cognitively able), followed by an available adult child (if a spouse is unavailable), and then by other informal helpers (for example, siblings, other relatives, and friends) or paid caregivers if a spouse or adult child is not available.27 In other words, for those without a spouse, adult children may step in until they are no longer able to provide the needed level of care. Therefore, the availability of adult children may be more directly linked to the need to use formal care than the availability of a spouse.

“A substantial share of informal care received by adults with dementia was unaccounted for by care provided by either a spouse or an adult child acting alone. This implies that there are multiple informal caregivers and combinations of caregivers (for example, a spouse together with an adult child or an adult child together with other relatives and friends) who may provide help for adults with dementia over the course of their illness.”

Source: HwaJung Choi, Michele Heisler, Edward C. Norton, Kenneth M. Langa, Tsai-Chin Cho, and Cathleen M. Connell, Family Care Availability And Implications For Informal And Formal Care Used By Adults With Dementia In The US, Health Affairs 2021 40:9, 1359-1367


“Having no adult child compared with having at least one adult child was associated with a substantially lower probability of receiving any informal care, at 43 percent versus 62 percent, respectively (exhibit 4). The adjusted probability of receiving ADL care from an adult child was 33 percent. The predicted total monthly hours from all ADL informal helpers was substantially lower for adults who did not have any adult child (95 hours) than for those who had at least one adult child (137 hours) (appendix exhibit A19).22

“The adjusted probability of any informal ADL care received by adults in this subsample was substantially higher if they had a co-resident adult child (73 percent versus 54 percent if they did not have an adult child within ten miles and 60 percent if they had at least one adult child within ten miles). The adjusted probability of receiving ADL care from an adult child among those who had a co-resident child was 52 percent, similar to that from a spouse (52 percent) (exhibit 4). Predicted total monthly hours from all informal ADL helpers were substantially greater if the subsample adults had a co-resident adult child at 193 hours, versus 104 hours with no adult child living nearby and 119 hours with at least one adult child living nearby but not co-resident (appendix exhibit A19).22“

Source: HwaJung Choi, Michele Heisler, Edward C. Norton, Kenneth M. Langa, Tsai-Chin Cho, and Cathleen M. Connell, Family Care Availability And Implications For Informal And Formal Care Used By Adults With Dementia In The US, Health Affairs 2021 40:9, 1359-1367


“In 2016, 286,300 participants were enrolled in 4600 adult day care centres (ADCCs) in the United States (Caffrey & Lendon, 2019). Adult day care is an option for individuals who need supervision during the day, support with meals, activities to participate in, and opportunities for social interaction. ADCCs may provide medical or social services, or be capable of providing both (Anderson et al., 2013). To provide medical services, centres must have a strong professional healthcare staff, including RNs, LPNs and nursing assistants, as well as physical, occupational and speech therapists, social workers and dietitians. Around 66% of ADCCs provide skilled nursing care and nearly half provide licensed therapeutic services (Happ, DabelkoSchoeny & Shin, 2018). To provide social services centres employ therapists, nutritionists and social workers to organize social activities, recreational activities and nutrition counselling. Some centres provide both medical and social services. All centres offer meals, a certain amount of personal care, and activities. Optional services include transportation to and from the centre, nursing care, counselling, social services and therapies.

“The type of individual that a day care centre will accept depends upon centre capabilities. Centres that can provide medical care can accept individuals needing nursing and custodial care while centres that only provide social activities do not have the capability to take these patients.

“In general, adult day care would not work for individuals who need heavy amounts of custodial or skilled nursing care, such as frequent monitoring of vital signs and invasive treatments. For this reason, centres tend to establish limits in terms of the number and types of deficits in activities of daily living a person can have, and the intensity of medical care the person needs. Adult day care has been a good option for individuals with cognitive impairment. Adult day care is often used by families to keep a family member in the home who otherwise would need institutionalization (Caffrey & Lendon, 2019). This delays institutionalization, gives family care-givers a respite from caring for the individuals, and allows family members to work (Jarrott & Ogletree, 2019). This kind of arrangement, however, means a commitment by the family to ongoing care in the hours that the individual is not in day care (evenings, nights and weekends) – a significant amount of informal care-giving. Families may supplement adult day care with private duty home care services (discussed in Section 5.11.1).”

Source: Rice T, Rosenau P, Unruh LY, Barnes AJ, van Ginneken E. United States of America: Health system review. Health Systems in Transition, 2020; 22(4): pp. i–441.


“Despite representing a small proportion of total Medicaid enrollees (5.9 percent in 2013), LTSS users represent a substantial proportion of Medicaid benefit spending (41.8 percent, or $167.7 billion in 2013). This includes spending on both institutional and non-institutional services (MACPAC, 2016b).

“As evident in expenditure data, LTSS for these populations can be very costly. Older adults and people with disabilities who rely on Medicaid to finance their care often “spend down” to Medicaid eligibility, meaning that they have exhausted their personal savings by paying out-of-pocket for care. Spending down is common among people using LTSS, particularly among those who require nursing home care. From 1996-1998 to 2008, nearly 10 percent of adults aged 50 and older spent down to Medicaid eligibility; more than half of these beneficiaries utilized personal care services, nursing home services, or both (Wiener, Anderson, Khatutsky, Kaganova & O’Keeffe, 2013).”

Source: Nga T. Thach, BS, and Joshua M. Wiener, PhD. An Overview of Long-Term Services and Supports and Medicaid: Final Report. RTI International for the US Dept. of Health and Human Services. May 2018.


“Medicaid eligibility depends primarily on income and assets. In most states, people who are eligible for SSI are automatically eligible for Medicaid. SSI income levels are about three quarters of the federal poverty level. In general, aged, blind, and disabled beneficiaries may not have more than $2,000 in countable assets for individuals and $3,000 for couples, a level that has not changed since 1989 (Colello, 2017).”

Source: Nga T. Thach, BS, and Joshua M. Wiener, PhD. An Overview of Long-Term Services and Supports and Medicaid: Final Report. RTI International for the US Dept. of Health and Human Services. May 2018.


Health Systems Facts is a project of the Real Reporting Foundation. We provide reliable statistics and other data from authoritative sources regarding health systems in the US and several other nations.


Page last updated Sept. 11, 2021 by Doug McVay, Editor.

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