1. 1 Overview of the National Long Term Care Survey (NLTCS) Conference on Chinese Healthy Aging and Socioeconomic Development Durham, NC August, 2004 Nicholas Holt

2. 2 Topic Guide Survey Objectives Background Survey Design Survey Content Innovations Research Results

3. 3 Objectives NLTCS – to characterize the health and functional status of the population 65 years and older Informal Caregiver Survey – to examine how family and social relations help chronically disabled persons function in the community

4. 4 Background Established in 1982 as a cross- sectional survey Sponsored by HCFA in 1982-1984 Picked up by NIA and the Center for Demographic Studies in 1989 Additional Funding from ASPE in all waves beginning in 1989

5. 5 Background Has both longitudinal and cross- sectional aspects Waves are nominally 5 years apart Particular emphasis on functionally impaired individuals

6. 6 Background Nationally representative measures of: Longitudinal and cohort patterns of change in functional limitation Mortality Health care and other services, formal and informal, received by impaired How care is paid for

7. 7 Design of Survey Entire sample gets a screener interview Disabled get a detailed interview Community Institutional Disability is defined by the screener interview

8. 8 The Sample A probability sample of persons aged 65 and older Added in groups over time (healthy supplement)

9. 9 The Sample (1) 1982 a probability sample from the MEDICARE files large enough to yield 6000 community disabled people (~35,000) conceived as a cross-sectional survey Census Bureau drew the sample and conducted the actual interviews

10. 10 The Sample (2) 1984 Sample included all community and institutional disabled plus a probability sample of the non-disabled from 1982 sample plus a probability sample from all who became 65 years old since 1982 Census Bureau drew the probability sample and conducted the actual interviews

11. 11 The Sample (3) 1989 - on Sample included all disabled who were disabled in the prior wave plus some or all of the non-disabled from prior wave plus a probability sample from all who became 65 years old since previous wave Census Bureau drew the probability sample and conducted the actual interviews

12. 12 Sample Sizes Interview 198219841989199419992004 Screener 11,57013,78610,33010,47411,002 Community 6,0885,9544,4635,0895,147 Institutional 1,9921,7731,3541,3301,036 Ancillary Caregiver 1,0071,600 Next-of-Kin 3,219544 Venipuncture 639 Buccal 2,083

13. 13 Survey Content Questionnaire content came from several sources Questions Disability, medical conditions, physical functioning, cognitive functioning Caregivers Nutrition, perceived health status Living arrangements, income, and education

14. 14 Screener Interview Primarily done by phone Determines whether or not the subject gets a detailed interview Determines whether subject gets a community interview or an institutional detailed interview

15. 15 Detailed interview questions Medical conditions Disability (ADL & IADL) Range of motion and impairment Cognitive functioning

16. 16 Detailed interview questions Insurance Income Children and siblings Medical providers and prescription drugs

17. 17 Detailed interview questions Helpers Caregiver selection Nutrition and social activities Institutional

18. 18 Demographic Variables Demographic and economic characteristics age, race, sex, marital status education, income and assets, housing and neighborhood characteristics

19. 19 Innovations Added a sample of caregivers starting in in 1989 Starting in 1994 a sample of non- disabled screen-outs were interviewed Starting in 1994 a supplementary sample of 95+ was added

20. 20 Supplemental Surveys Next-of-Kin Mortality Follow Up (1984 and 2000) Biological Specimens 638 bloods in 1999 1172 buccal washes in 1999 3000 bloods planned in 2004 1000 buccal washes planned in 2004

21. 21 Medicare Data Survey data supplemented with linked Medicare claims history from CMS for each survey participant Medicare data linked to NLTCS survey data and furnished to CMS Researchers must obtain Medicare data directly from CMS

22. 22 Research Results Chronic disability Severe cognitive impairment Medicare expenditures Genetic studies

23. 23 Possible Research Areas Function limitations, physical and cognitive Patterns of change Medical conditions Health care services used Caregiver assistance Demographic and economic characteristics Out of pocket expenditures

24. 24 Survey Data Survey data can be obtained from CDS or, with some added value from Unicon, Inc. http://www.unicon.com/ In either case the DUA will be signed with CDS http://nltcs.cds.duke.edu/index.htm