More than 8 million people (mostly women and mostly older than 65) used services of a long-term care provider last year, according to the first-ever compilation of federal data profiling the types of providers in the USA and the people who use them.
The report, released Thursday, is based on the National Study of Long-Term Care Providers, a new effort by the National Center for Health Statistics to get a better handle on the options for care and determine trends.
"Most think of nursing homes, but because the long-term care industry has evolved over the past 30 years, nursing homes are still the major player in long-term care services but not the only provider," says Lauren Harris-Kojetin, the report's lead author.
The five areas of paid, regulated providers are adult day service centers, home health agencies, hospices, nursing homes, and assisted living and similar residential care communities. The report for 2012 includes some 2011 data; officials say numbers will be updated every two years.
Having the federal data will help providers and officials understand the scope of caregiving needs, suggests John Schall, CEO of the Caregiver Action Network, a family caregiver organization based in Washington, D.C.
"This confirms what we always suspected in terms of what those numbers would look like," he says. "That's a fascinating number (8 million) because we never actually had that number."
However, Schall says the 8 million figure is still "a minority of people receiving care."
"By far, the lion's share of people getting care are getting it from their family caregivers rather than from paid care workers," he says. "There's no question that family caregiving is really the backbone of the long-term care support services in this country."
Data released this summer from the Pew Research Center showed that 39% of adults in the USA say they are caregivers for someone with significant health issues, up from 30% in 2010.
In many cases, Harris-Kojetin says, the new information is "a piece of the picture" of people who may also be getting unpaid, informal care, "but at least some services from paid, regulated providers."
The national report finds that about 58,500 paid, regulated long-term care entities are divided among the five sectors and employ nearly 1.5 million nurses and nursing aides.
The report finds that "a sizable portion of service users" in all five types of facility sectors had a diagnosis of Alzheimer's disease or other dementias, ranging from about 30% of home health patients to almost half of nursing home residents.
The percentage of users of long-term care services diagnosed with depression was highest in nursing homes (48.5%) and lowest in residential care communities (24.8%), adult day services centers (23.5%) and hospices (22.2%).