Dementia in Nursing Home Residents: Findings and Issues in Current Research

1. Dementia in Nursing Home Residents: Findings and Issues in Current Research Based on the publications of Sheryl Zimmerman, Ph.D. Associate Professor School of Social Work University of North Carolina at Chapel Hill Research to Teaching Initiative

2. Why Interest in Dementia in Nursing Homes • Approximately 5% of those >65 reside in nursing homes1 • 25%-50% of those >65 today will enter a nursing home in their lifetimes2 • 50%-75% of all nursing home residents have dementia3 Research to Teaching Initiative

3. Topics to be Covered • Issues in research • Description of the population • Special Care Units (SCUs) Research to Teaching Initiative

4. Issues in Research: Diagnosing Dementia (Magaziner, et al., 1996) • Multi-stage diagnostic process difficult in large scale research • Chart data often unreliable • Variable clinical judgment • Multiple diagnostic standards • How to accurately diagnose dementia in large, dispersed research populations? Research to Teaching Initiative

5. Example Model to Diagnose Dementia in Research Studies (Magaziner, et al., 1996) • Lay evaluator collects data • Older Americans Resources and Services measure (family) • Mini Mental Status Exam • Blessed Dementia Scale • Confusion Assessment Method (nurse) • Katz Activities of Daily Living (nurse) • Geriatric Depression Scale • Cornell Scale for depression (nurse) • Psychogeriatric Dependency Rating Scale • Demographic and medical information Research to Teaching Initiative

6. Example Model to Diagnose Dementia in Research Studies (Magaziner, et al., 1996) • Expert Panel • 2 neurodegenerative neurologists • 2 geriatric psychiatrists • 1 geriatrician • Evaluator data reviewed by 2 panelists • If disagree whether dementia, goes to full panel • Diagnoses: Dementia, No dementia, Indeterminate Research to Teaching Initiative

7. Example Model to Diagnose Dementia in Research Studies (Magaziner, et al., 1996) • Panel diagnosis compared with direct assessment by geriatrician for 100 participants • Found • Agreement 76% of cases (kappa=0.59) • If combined No dementia and Indeterminate, agreement 83% (kappa=0.66) • Agreement highest for low (0-16) and high (24-30) MMSE • Agreement here similar to inter-rater clinician agreement for dementia diagnosis Research to Teaching Initiative

8. Issues in Research: Measuring Functional Status (Zimmerman and Magaziner, 1994) • Because many elders cannot respond for themselves, proxy-derived or performance based data are needed • Proxy advantages: • Efficient • Good response agreement with older adult on objective questions • physical activity • cognitive ability • Only way to get data for time prior to nursing home admission Research to Teaching Initiative

9. Proxy-Derived Data (Zimmerman and Magaziner, 1994) • Influences on response agreement • Proxy relationship to individual • Objectivity of question • Subject type • Considerations when using proxies • Specific concrete questions • Assume proxies over-report disability compared to individual Research to Teaching Initiative

10. Performance Based Measures (Zimmerman and Magaziner, 1994) • Advantages • Objective, quantifiable, valid • Some have been designed specifically for cognitively impaired • Predictive for survival, hospitalization, falls, long-term care • Can be used for people with language problems Research to Teaching Initiative

11. Performance Based Measures (Zimmerman and Magaziner, 1994) • Disadvantages • May not reflect demands of actual environment • Require training, space, time • If resources allow for a choice, use performance based measures over proxy reports, or consider data from multiple perspectives Research to Teaching Initiative

12. Issues in Research: Definitional Clarity (Magaziner and Zimmerman, 1994) • One area of care for elders with dementia is the special care unit • What exactly is a special care unit? • What are the characteristics of those receiving services in special care units? • What are “good” outcomes--quality of life, better functioning, avoiding injury, behavior management? • Do special care units provide “best care”? Research to Teaching Initiative

13. People with Dementia in Nursing Homes: Description (Magaziner et al., 1998, Magaziner, et al., 2000) • As many as 75% have dementia • Prevalence higher in small facilities and metropolitan areas • Higher risk of dementia in nursing home residents: • age (odds ratio 2.25 for >85 years old) • race (odds ratio 1.69 for non-White) • married (odds ratio 1.41 for married) • education (odds ratio 1.52 for <9 years education) Research to Teaching Initiative

14. People with Dementia in Nursing Homes: Description (Magaziner et al., 1998, Magaziner, et al., 2000) • More impaired functioning than non-demented (except walking) • More behavioral problems (55% versus 21%) • More psychiatric symptoms (48% versus 36%) • Slightly lower rates of physical co-morbidities (91% versus 94%) Research to Teaching Initiative

15. People with Dementia in Nursing Homes: Description (Magaziner et al., 1998, Magaziner, et al., 2000) • There is considerable overlap in health and functioning between people with dementia and those without • People with dementia are a heterogeneous group--individualized services essential • There is a sizable subgroup of residents (with and without dementia) with minimal functioning and behavior problems--appropriateness of placement? Research to Teaching Initiative

16. Care for People with Dementia in Nursing Homes: Medical(Burton et al., 2001) • Fewer physician visits (10.2/yr versus 12.7/yr) • Fewer hospital admissions (0.9/yr versus 1.2/yr) • Less care after fever (65% with no visits, versus 59%) • Less care after infection (73% no visits, versus 68%) Research to Teaching Initiative

17. Care for People with Dementia in Nursing Homes: Environmental (Zimmerman and Sloane, 1999) • Exit control • Short/no hallways • Toilet visible from bed • Sign/graphic on bathroom door • Inside of bedroom visible from hallway • Personal object outside of bedroom • Television not routinely on • Homelike public area Research to Teaching Initiative

18. Specific Environmental Concerns in Special Care Units (Sloane et al, 2000) • Illumination did not meet industry standards in >50% of areas • Variation in illumination in activity rooms, ratios of 4:1 • Background noise impaired understanding of conversation in dining area and nurses station • Mechanical devices, hollering residents, obtrusive staff produced high intensity pulse noise Research to Teaching Initiative

19. Special Care Units for Dementia: Philosophy of Care(Zimmerman, et al., 1997) • Promote safety and security • Mitigate disruptive behaviors • Support cognitive functioning • Maximize independent functioning • Enhance connection to others • Regulate stimulation Research to Teaching Initiative

20. Philosophy versus Practice (Zimmerman, et al., 1997) • Researchers observed behavior and treatment, and compared it with the professed philosophy of the special care unit • For units stating strong support for a philosophy, this was the observational rating by researchers • Support cognitive functioning 0.28 (0-3 scale) • Regulate television use 1.67 (0-3 scale) • Promote safety and security 10.17 obstacles to movement • Mitigate disruptive behavior 17.8% residents exhibited problem behavior • Never use restraints 15.5% residents restrained Research to Teaching Initiative

21. When Working with Nursing Home Residents with Dementia • Remember • Strengths and weaknesses of proxy versus performance measures can be extrapolated to assessment processes • Heterogeneity of population, so service must be individualized • Ensure access to all needed medical care • Advocate for dementia-sensitive care, based in observation, not espoused philosophy Research to Teaching Initiative