Long Term Care

What is meant by “Long Term Care?”
Medical care or personal assistance provided by a caretaker or a facility for a period of weeks or months (or longer) is long term care. Neither the level of care nor the length of time are perfectly defined; “long term care” refers instead to the condition of extended or permanent dependence on care from another.

What is the significance of “Activities of Daily Living?”
The ability to perform Activities of Daily Living (ADLs) is a common standard for judging whether an individual requires long term care. If he or she retains the ability to perform most or all of the ADLs without prompting or assistance, then long term care is probably not required. Some individuals are able to perform ADLs, but only after prompting or cuing; the level of assistance required and the number of ADLs requiring assistance will help determine the level of care the patient will need.

What are the “Activities of Daily Living?”
Some professionals recognize five essential ADLs: dressing, eating, ambulating, toileting and hygiene. In order to truly function well for an extended period of time, an individual should also be able to perform higher-level ADLs like shopping, accounting, food preparation, housework and transportation. The first group of ADLs is sometimes referred to by the unfortunate acronym DEATH, and the latter as SHAFT. See the Mayo Clinic definitions. Another distinction is sometimes made between the essential ADLs of eating, getting in and out of bed, getting around inside, dressing, bathing and using the toilet and the “instrumental” ADLs of getting around outside and shopping for groceries.

The National Center for Health Statistics recognizes seven ADLs and six IADLs. According to the CDC, ADLs include bathing or showering, dressing, eating, getting in and out of bed or chairs, walking, getting outside and using the toilet (including getting to the toilet). IADLs include preparing one’s own meals, shopping for groceries and personal items, managing one’s money, using the telephone, doing heavy housework (scrubbing floors and washing windows, for example), and doing light housework (such as doing dishes, straightening up or light cleaning).

How is mental capacity involved in determining the need for long term care?
Although there is a high incidence of confusion and even dementia among patients in long term care settings, mental incapacity is not necessarily a component of the need for such care. Inability to perform the ADLs can be based solely on physical or health limitations. On the other hand, perfectly healthy individuals may be so confused or demented that they are unable to perform the ADLs and, therefore, require long term care.

In what settings might long term care be provided?
Long term care can be provided in nursing homes, adult care homes, assisted living facilities, congregate living arrangements, adult day care centers, and in homes and apartments. This list of long term care settings is arranged roughly from more restrictive to less restrictive settings, though seriously impaired individuals might be cared for at home in surroundings that mimic more institutional settings, and some institutions (especially adult care homes) may be homelike and relatively inviting.

How common is the need for long term care?
Among the elderly, limitations in ADLs are seen fairly frequently. In one 1989 study of data compiled by the National Aging Information Center over 16% of those over age 65 (and almost half of those over age 85) suffered from limitations in one or more ADL. It is important to remember, however, that the same study can be read the other way: more than half of all individuals over the age of 85 (and 84% of those over age 65) demonstrated no limitations in their ability to perform the ADLs.

How common is the need for nursing home placement?
Seniors tend to be particularly concerned about the likelihood that they will require nursing home placement at some time in the future. Although there is abundant information about the population, age and condition of nursing home residents, it is difficult to make statistical projections from that information. The best-known attempt is contained in a 1991 article in the New England Journal of Medicine (P. Kemper and C.M. Murtaugh, “Lifetime Use of Nursing Home Care,” N Engl J Med 1991 Feb 28;324(9):595-600, abstract here). That study projected that among individuals turning 65 in 1990, 43% would spend at least some time in a nursing home before death. Currently, about 1.6 million Americans over age 65 (about 4% of the elderly population) reside in nursing homes.

How long is a typical nursing home stay?
The same study by Kemper and Murtaugh attempted to calculate median and average nursing home stays. The figures they used (now more than a decade old) indicated that slightly more than half of nursing home residents would have total lifetime nursing home stays of more than one year, and about one in five would spend more than five years in the nursing home.

Is there a difference in nursing home placement between men and women?
Yes. Females are considerably more likely than their same-age male counterparts to enter a nursing home, and are about twice as likely to have an extended (five year or more) stay once they do go into the nursing home.

How much does long term care cost?
The cost of long term care varies widely by geographic region, by level of care and by individual facilities and caretakers. It can be dangerous to rely on rough estimates of long term care costs, but typical current costs for the Tucson, Arizona, area might be $40,000 (or more) for nursing home care and half to two-thirds that amount for adult care home placement. Costs for similar facilities in the rest of the country will vary tremendously, with larger metropolitan areas and eastern states generally seeing higher costs than smaller communities in the south and west.

What is the cost of long term care provided at home?
This is the hardest cost to predict. Occasional assistance with meals, cleaning or shopping might only cost a few hundred dollars per month. Full-time, round-the-clock skilled nursing care provided by nursing agency employees (and the expenses related to home upkeep) can cost as much as $120,000 per year. For most individuals receiving full-time nursing care in the home from a combination of family and paid caregivers, the annual cost will approximate the cost of a good adult care home or skilled nursing facility.

Who pays for long term care?
Informal care provided by family members without formal payment probably accounts for by far the largest share of long term care. Because that cost is difficult to calculate, no one is sure of the economic effect of family caregiving arrangements. It is also difficult to quantify the cost of third-party long term care services provided in the home, since a large part of the total is really medical care and much of the remainder is also provided on an informal basis. More formal long term care arrangements in the home and in institutions are paid for by a combination of federal and state assistance programs, social and charitable organizations, insurance and personal wealth. The precise contributions of each of those sources is in flux, and varies further based on whether the question is limited to institutional care or includes home care.

How much of the cost of long term care is paid by the federal Medicare program?
Medicare covers only a small portion of the total national cost of long term care. If home care is included in the calculation, as much as 20% of long term care costs are paid by Medicare; if only institutional care is considered, Medicare pays less than half that percentage. Medicare’s share of the home care budget has increased sharply in recent years, as health care organizations have responded to government pressure by releasing patients from hospitals and acute care centers more quickly.

Why does Medicare’s long term care benefit pay such a small portion of the cost of long term care?
Medicare provides coverage for up to 100 days of long term care for its beneficiaries (generally speaking, those who are over age 65 or disabled and who are eligible to receive Social Security retirement or disability benefits). While that benefit may sound generous, it is sharply limited by two factors. First, while the first 20 days of care are fully covered, the next 80 days require a substantial ($137.50 in 2010) daily payment by the beneficiary. Second, Medicare limits its long term care benefit by defining “skilled nursing” care to include only those services which will result in rehabilitation of the patient. Between those two limitations few nursing home residents (but more home care patients) are covered by Medicare for their long term care.

What is the effect of Medicare HMOs on long term care costs?
About 34% of Arizona Medicare beneficiaries receive their medical care from HMOs (only Oregon and California report higher rates of HMO coverage for Medicare benefits). Although the common perception is that Medicare HMOs are less likely to cover long term care costs than “traditional” Medicare coverage, HMOs are required to provide long term care under exactly the same terms as those governing non-HMO Medicare recipients. So far, data on the actual utilization of long term care under Medicare HMOs is inconclusive or lacking, despite the popular perception of non-coverage.

What insurance programs pay for long term care?
Insurance coverage of long term care benefits comes from two primary sources: so-called “Medigap” policies and long term care insurance. “Medigap” insurance is available to Medicare beneficiaries, and covers the copayment and deductibles incurred by those beneficiaries. Because the copayment for long term care benefits is so large, Medigap coverage can provide a significant benefit to patients IF they can meet the rehabilitation requirements of Medicare’s long term care coverage. Long term care insurance, on the other hand, is not dependent on Medicare’s limited definition, and will pay for nursing home, assisted living or home care in accordance with the terms of the individual insurance contract. For more information about long term care insurance, see our Long Term Care Insurance FAQ.

What portion of long term care costs is paid by insurance?
According to the Health Care Financing Administration the private insurance contribution to the cost of nursing home care in 1998 was slightly more than 5% of the total cost (that total cost, incidentally, amounted to almost $88 billion, and insurance accounted for $4.7 billion). The percentage of the cost paid by insurance grew from 1990’s 4.1%, but most of the growth in the insurance share appeared in the most recent two years. (Review theHCFA table) A similar calculation for the home care portion of long term care costs is not readily available, but should be expected to be in the same percentage range.

How much do individuals pay for nursing home care?
According to the HCFA tables described above, individuals paid $28.5 billion (or 32.5% of the total cost) directly from their own wealth (savings and income) for nursing home care in 1998. The percentage figure dropped from 43.1% in 1990 and 77.9% in 1960.

Who pays the rest of the national nursing home cost?
By far the largest contribution to the cost of institutional long term care in recent years has come from the federal/state Medicaid program. In 1998, Medicaid paid $40.6 billion, or 46.3%, of the total nursing home bill. While there has been some fluctuation in that percentage, it has not changed much for two decades; the 1980 figure was 50%. For more information on Medicaid coverage of long term care, try our Medicaid FAQ.

Where can I get more information about long term care?
Advocacy groups for patients with individual illnesses abound on the web, including the Alzheimer’s Association, the National Parkinson Foundation, and others. One lively and informative site for long term care information not affiliated with any one illness is run by advocate Martin Bayne, who calls himself “Mr. Long-Term Care.”