1. Trends in Functional Status and Disability among the Elderly Ellen Kramarow Jennifer Akerblom NCHS Data Users Conference July 2004 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention National Center for Health Statistics

2. Overview Disability and Functioning Definitions Trends Data Warehouse on Trends in Health and Aging Examples

3. Definitions Conceptual Frameworks (Nagi, IOM, WHO) Pathology Impairment Functional Limitation Disability

4. Definitions Disability is a complex concept Intersection of individual’s capacity with environment Measurement in surveys does not necessarily capture all aspects of concept

5. Definitions Disability Measurement Self-report vs. performance measures Survey design considerations (e.g., institutionalized vs. noninstitutionalized, age groups, cross section vs. panel, self- report vs. proxy)

6. Definitions Disability Measurement Activities of Daily Living (ADL) Instrumental Activities of Daily Living (IADL) Physical functioning (aka Nagi items)

7. Definitions Disability Measurement Question wording Difficulty Needs/receives help Ability to perform with/without help or equipment

8. Trends Recent review in JAMA (Freedman et al., 2002) Declines in IADL limitations Declines in physical functioning (Nagi) limitations Mixed evidence on ADLs (forthcoming paper shows decline in some measures from mid-1990s)

9. Trends Data Warehouse on Trends in Health and Aging A collection of data tables providing information on trends of health and health care use by older Americans. Viewable online or with Beyond 20/20 software. Supported with funding from the National Institute on Aging (NIA) http://www.cdc.gov/nchs/agingact.htm

15. Medicare Current Beneficiary Survey (MCBS) Began in 1991 Survey sample: N = 12,000 (target sample size) community and facility dwelling Medicare beneficiaries Questions include: health care use and cost sociodemographic characteristics health status physical functioning

16. MCBS and ADLs Question: Because of a health or physical problem, do you have any difficulty bathing/showering, dressing, eating, getting in/out of a bed/chair, walking, or using the toilet?

21. Community Residents Age 65 and over

23. Limitation of Activity: Difficulty Performing Activities of Daily Living, by Age, Residence, Sex, Race and Ethnicity. MCBS, 1992-2002 Among all individuals age >=65: Decrease in reported ADL limitations between 1992-2002 Among individuals living in a facility: Increasing trend in reported difficulty eating and/or using the toilet

24. National Health Interview Survey (NHIS) Initiated in 1957 Surveys the civilian non-institutionalized population, N = approx. 100,000 persons from about 43,000 households Collects information on the amount, distribution and effects of illness and disability Survey redesigned in 1997

25. NHIS and ADLs Question: Because of a physical, mental, or emotional problem, do you need the help of other persons with personal care needs? If yes, do you need the help of other persons with bathing, dressing, eating, getting in/out of bed/chair, using the toilet, including getting to the toilet, and getting around inside the home?

29. Needing Help with ADLs by Age, Sex, Race, and Hispanic Origin. NHIS, 1997-2001 From 1997-2001, a decreasing trend in reported need for help with bathing/showering was observed No significant change occurred in the percentage of people reporting they need help with other ADLs

31. MCBS and Physical Functioning Question: How much difficulty, if any, do you have stooping, lifting, reaching, grasping, and walking a quarter mile? Response Options: No difficulty at all, A little difficulty, Some difficulty, A lot of difficulty, Not able to do, Refused, Don’t know

33. Limitation of Activity: Difficulty in Physical Functioning by Age, Residence, Sex and Race. MCBS, 1992-2002 Community dwelling individuals reported: Increased difficulty stooping Decreased difficulty lifting, reaching and grasping Facility dwelling individuals reported: Increased difficulty lifting

34. NHIS and Physical Functioning Question: By yourself, without using any special equipment, how difficult is it for you to walk a quarter mile, climb, stand, sit, stoop, reach, grasp, carry, and push? Response Options: Not at all difficult, Only a little difficult, Somewhat difficult, Very difficult, Can’t do at all, Do not do this activity

36. Any Difficulty in Physical Functioning by Age, Sex, Race, and Hispanic Origin. NHIS, 1997-2002 65% of the respondents reported ‘any difficulty’ with at least 1 of 9 physical tasks Percentage reporting ‘any difficulty’ has remained constant from 1997-2002

38. Discrepancy in Stooping Measure MCBS asks about “stooping, crouching, or kneeling” NHIS asks about “stooping, bending, or kneeling” Percent “unable” to perform stooping is similar in both surveys Unclear why estimates are different

39. Summary MCBS data from 1990s show decline in ADL limitation among noninstitutionalized older persons. NHIS shows a decline in percent needing help with bathing/showering only from 1997 to 2001. For many items, no change seen during time period covered by NHIS.

40. Summary MCBS shows declining percent with difficulty in lifting, reaching, and grasping. Stooping measure is a puzzle. Data on institutionalized generally show increase in disability.

41. Summary A lot of data on disability and functioning among the elderly are available. Estimates across sources may differ because of differences in question wording, sample design, and other factors. Making sense of the data takes work and attention to detail.