Brown University LTC Focus data: Data on the health and functional status of nursing home residents, characteristics of care facilities, state policies relevant to long term care services and financing, and data characterizing the markets in which facilities exist. The full data set is available for download via this form.
The 2018 AP/NORC Long-Term Caregiving Poll surveyed American adults with experience providing long-term care to an aging loved one to investigate the challenges and costs associated with providing care. While the 2017 survey focused specifically on those age 40 and older, this year’s survey also explores the perspectives of younger adults age 18-39, generating new insights into their personal experiences with caregiving and their views of long term care. Interviews for this survey were conducted June 26-July 10, 2018, with 1,024 adults age 18 and older with experience providing long-term care to a family member or friend. Files download in a ZIP file with STATA, SAS, SPSS, and CSV formats included with the codebook.
Shaping Long Term Care in America 2009-2011: Includes a nationally representative sample of nursing homes through the use of two separate surveys, capturing the attitudes and practices of providers about the impact of state policies, market forces, and organizational factors that impact provider performance and residents’ outcomes.
One thing to look at when investigating long-term care facilities is staffing. Staffing is one of the measures used in the five-star rating system. It may be helpful to compare this data with general information on currently active nursing homes, including number of certified beds, quality measure scores, and other five-star criteria. Jordan Rau of Kaiser Health News did an eye-opening report that showed that most nursing homes had fewer nurses and caretaking staff than they had reported to the government for years. You can find staffing ratings and reported, expected, and adjusted staffing values here (CMS spreadsheet). CMS Payroll Based Journal (PBJ) staffing data is submitted by long-term care facilities. Data are presented as one row per work day, for each facility. Use this data to track actual (paid) staffing against what facilities report to CMS. Sort and filter data by numerous variables, such as size, state, ZIP code, CNA staffing per resident per day and more. Information is updated quarterly.
National Study of Long Term Care Providers (NSLTCP): CDC monitors trends in the supply, provision, and use of the major sectors of paid, regulated long-term care services. NSLTCP uses survey data on the residential care community and adult day services sectors, and administrative data on the home health, nursing home, and hospice sectors. Survey data, tables, maps, and more are available in PDF format.
LTCfocus.org was developed by the Brown University School of Medicine. The goal is to allow researchers to see relationships between programs, policy, and local markets; and to help policymakers create guidelines for more equitable and higher quality long term care for older adults. It allows for online creation of custom reports from many different sources, as well as access to pre-made reports and a downloadable database.
Genworth Financial provides data on long-term care costs in each state by type of care.
Genworth Financial provides data on long-term care costs in each state by type of care