Description & Citation--Study No. 9681

The National Long-Term Care Survey (NLTCS) has completed six waves, nominally at five-year intervals, 1982, 1984, 1989, 1994, 1999, and 2004. The NLTCS is a nationally-representative sample both of the community and of institutional populations and is longitudinal in that sample persons age in once they reach 65 years of age and stay in the survey until they either die or are lost to follow-up. At each wave, a screener questionnaire is administered to the sample which divides the sample into three parts: the non-disabled (frequently called screen-outs), the disabled but living in the community, and the disabled living in an institution. About 5,000 people die between waves and are replaced by a sample of about that size of people who have become age 65 since the prior wave. Because of budget considerations it usually has not been possible to continue the entire non-disabled sample into the next wave. Instead a sample of the non-disabled is drawn to keep the total sample size for a wave at about 20,000. One of the interesting and useful features of the NLTCS is that data are collected on help that the sample person receives from informal caregivers.

The NLTCS is a very data-rich resource with many components, including disability measures, medical conditions, attained education levels, and income. Numerous papers have used it as a source of data addressing a wide variety of topics related to aging and disability.

Ancillary surveys have been added to measure other characteristics of the 65 and older population, to include a Caregiver Survey to acquire data on informal caregivers themselves (done in 1989, 1999, and 2004) and Next-of-Kin (NOK) surveys administered to sample persons who had died between 1982 and 1984 and again between 1994 and 1999. The sample has been frequently supplemented to compensate for low representation in some survey components, in particular the 75+ and 95+ components. In 1999 physical specimens were drawn from a sample of persons who responded to the survey. These physical specimens (blood where possible, alternatively a buccal wash) are subject to a genetic analysis and, in the case of bloods, to a panel of proteins believed to be particularly important to health.

NLTCS Survey Data

Survey data are available in ASCII and SAS format.

The Analytic Data File, a file of derived variables for all waves of the survey incorporates correction factors and consistency checking. The Analytic Data File covers all waves of the survey and is available in both ASCII and SAS formats. Final versions of data for all waves, up to and including 1999 and a beta version for 2004, have been released and are supported by documentation.

NLTCS Linked Data

There are currently two linked files available from the Center for Medicare and Medicaid Services (CMS):

• A Vital Statistics file containing survey participants' dates of birth and death and removed from the public use files for reasons of confidentiality.

• A Medicare (Parts A and B) Service Use file containing Medicare records of those surveyed, with identifying information deleted and replaced with an anonymous sequence number linking the file to the corresponding NLTCS record.

• DS1: National Long-Term Care Survey: 1982, 1984, 1989, 1994, 1999, and 2004

• Data Use Agreement