Nursing Home Regulation

1. Nursing Home Regulation Kathleen C. Buckwalter, PhD, RN, FAAN Professor of Nursing Emerita, and Co-Director, National Health Law & Policy Resource Center Elder Law Colloquium The Aging Population, Alzheimer’s and Other Dementias: Law & Public Policy University of Iowa College of Law April 5, 2012

2. I I. BACKGROUND

3. I Predictors of Institutionalization • Patient Factors • Behavior Problems • Increasing Cognitive Impairment • ADL Impairment • Physical Health Decline • Caregiver Factors • Burden • Physical Health Effective approaches to enhance QOL should target some of these factors

4. I Percent of Nursing Home Residents with Cognitive Impairment/ Dementia • In 2009, 68% of nursing home residents had some degree of cognitive impairment. • In 2011, 47% of all nursing home residents had a dementia diagnosis in their nursing home record Source: Alzheimer’s Association, 2012 Alzheimer’s Disease Facts and Figures (2012)

5. I Quality of Care (QOC)in Persons with Dementia (PWD) “Providing consistently high quality of care in nursing homes to a variety of frail very old residents … requires that the functional, medical, social and psychological needs of residents be individually determined and met ….” Institute of Medicine, Improving the Quality of Care in Nursing Homes (1986) at p. 10.

6. I Medicare/ MedicaidNursing Home Certification:Quality of Care Requirements General – Each resident shall receive and each facility shall provide necessary care and services “to attain or maintain the highest practicable physical, mental and psychological well-being” of a resident in accordance with the resident’s comprehensive assessment and plan of care.

7. I Medicare/ MedicaidNursing Home Certification:Specific Quality of Care Requirements • Activities of Daily Living • Vision and Hearing • Pressure Sores • Urinary Incontinence • Range of Motion • Mental and Psychosocial Functioning • Nutrition • Hydration • Nasogastric Tubes • Special Needs • Unnecessary Drugs and Antipsychotic Drugs • Medication Errors • Accidents

8. I Quality of Care RequirementsUnnecessary Drugs and Antipsychotic Drugs The facility must ensure residents do not receive unnecessary drugs, defined as a drug use in excessive dosage, for excessive duration, without adequate indications in use, or with adverse consequences. Facilities must ensure residents are not started on antipsychotic drugs unless clinically necessary and that if a resident receives such drugs, efforts are made to discontinue their use.

9. I Quality of Life (QOL)in Personswith Dementia (PWD) • Until recently, identifying positive outcomes to maximize QOL was neglected are of research • View the person with AD as an object or problem to be managed vs. person with thoughts, desires, needs that require attention (Keane, 1994; Kitwood, 1997) • Stripping of Personhood” (Lawton, 1994) vs. understanding Individual perspective and impact of disease on the individual • PWD need adequate and continuing treatments in a stable, safe, stimulating environment (Weyer & Schaufele, 2003)

10. I Promoting emotional well being in persons with dementia (Burgener & Twigg, 2002) • Relationships/social interactions/human contact vs “’ pulling away” • Comfort/freedom from pain • Meaningful, pleasant activities (Whitehouse & Rabins, 1992) –e.g. art, storytelling, TIMESLIPS • Ability to communicate needs (Malott & McAiney, 1995 • Recognizing & supporting previous skills and positive behaviors (Buckwalter et al. 1996) • Continued intimacy with family (Parse, 1996) • Need for “normalcy, sense of continuity and personal control”

11. I Indicators of Well-Being in People with Dementia (Kitwood & Bredin, 1992) • Assertion of desire or will • Ability to express a range of + and – emotions • Initiation of social contact • Social security • Self-respect • Acceptance of other people with dementia (instit setting) • Humor • Creativity/Self expression • Showing pleasure • Helpfulness • Relaxation

12. I QOL for Care Recipient influenced by Caregiver factors (Burgener & Twigg, 2002) • Relationship between CG factors and CR QOL outcomes- beyond that accounted for by changes in mental ability • Role stress • Quality of CG/CR relationship • Facilitation of social contacts and activity participation by CG

13. II II. SPECIAL CARE UNITS

14. II Driving Forcesfor Segregated Units better care for dementia victims non-dementia residents prefer separate space 1 2

15. II Should demented be segregated? Reduce level & complexity of stimuli Protect the nondemented Focus programming Staff believe care is better Some evidence of improved outcomes YES

16. II When Lucid and DementedElders are Housed Together Problems for Lucid Elders: Invasion of privacy Lost or damaged personal property Decreased socialization as resident attempts to avoid encounters with the confused Interrupted sleep Fear of physical harm from the agitated resident

17. II When Lucid and Demented Elders are Housed Together Problems for Demented Elders: Tranquilizing medication causes decreased mobility, loss of appetite, and dependence in activities of daily living Exclusion from traditional planned activities and subsequent decreased socialization

18. II When Lucid and DementedElders are Housed Together Problems for Demented Elders: Negative feedback from caregivers and other residents Increased fear and agitation leading to the use of soft-tie restraints Negative family response to the use of restraints, possible decreased visiting

19. What makes Special Units Special? II Special “It Depends.”

20. II What is a Special Unit? No Standard Definition No Uniform Terminology No Standardized Criteria

21. II SCU………………………….. “a distinct part of a health care facility which is clearly identifiable, containing contiguous rooms in a separate wing or building or on a separate floor of the facility, and for which a special program of care has been approved.” (ADRDA Unit Rules Committee, 1988)

22. II Five Characteristics of “Special” Units • Staff selection and training • Activity programming • Family programming • Physical environment and decor, including separation • Admission criteria

23. II Special vs. Segregated 7 dimensions of care (AAHA) Commitment Philosophy Therapeutic care Physical design Staff Communication Research and education

24. II Management Modalitiesfor SCUs THERAPEUTIC PROGRAMS Approaches and activities appropriate for resident cognitive and functional status Focus on resident strengths and familiar activities, such as religious, cultural, ethnic rituals

25. II Management Modalitiesfor SCUs THERAPEUTIC PROGRAMS Group occupational, physical, and activity therapy programs, such as cooking, gardening, dancing, exercise, and sensory stimulation One-on-one activities, such as ball throwing, review of photo albums, and hand massage

26. II Management Modalitiesfor SCUs INVOLVEMENT OF FAMILIES Encouragement of family participation in activities and care Provision of information and support groups

27. II Management Modalitiesfor SCUs PHYSICAL ENVIRONMENT Reduction of noxious stimuli Provision for safe wandering Access to outdoors Wayfinding cues Visual, tactile, musical, and other sensory stimulation

28. II Management Modalities for SCUs STAFF APPROACHES TO CARE Individualized care planning and provision A team approach to care with consistent staffing Behavior modification Minimization of physical and pharmacologic restraints Emphasis on patient dignity

29. II SCUs -- Legal and Public Policy Issues

30. II III. Atypical Antipsychotic Drugs

31. II Pharmacological Interventions • For mild-mod BPSD non-drug approaches 1st • Psychotropic meds (short term) for severe behavior • Manic sxs: Mood stabilizers (anti-convulsants) • Agitation/aggression: SSRIs, Mood stabilizers, trazadone • Psychotic sx/severe aggression (danger to self/others) -- IM Haldol in crisis. Atypical Antipsychotics • Depressive sxs/anxiety: S SSRI antidepressants/benzos

32. II Meds, con’t • Adjust to non-pharm approaches • Side Effects • Black box warnings • Off-Label • Cognitive Enhancers (Chol. Inhibitors) • Modest benefit • (Donepezil, rivastigmine, galantamine, memantine)

33. II Non-Pharmacological Management of Behavioral and Psychological Symptoms of Dementia (BPSD): Best Practices • Interventions • No “easy” answers • Complicated by changing clinical course • Principles of Care: • Adjust daily routines • Change reaction and responses to behaviors • Monitor and adjust the environment, remove triggers • Adjust interaction and communication strategies Gould (2007) Williams (2005) (Ballard et al., 2009; Burgener & Twigg, 2002; Smith & Buckwalter, 2005)

34. II Cochrane Reviews and Protocols Selected for Nonpharmacological Interventions These reviews and protocols can be found at: http://dementia.cochrane.org/ orhttp://dementia.cochrane.org/our-reviews Aroma therapy for dementiaCognition-based interventions for healthy older people and people with mild cognitive impairmentCognitive rehabilitation and cognitive training for early-stage Alzheimer's disease and vascular dementiaHomeopathy for dementiaInterventions for preventing and reducing the use of physical restraints in long-term geriatric careInterventions for preventing delirium in hospitalized patientsLight therapy for managing cognitive, sleep, functional, behavioral, or psychiatric disturbances in dementiaMassage and touch for dementiaMultidisciplinary team interventions for delirium in patients with chronic cognitive impairmentMusic therapy for people with dementiaNon-pharmacological interventions for wandering of people with dementia in the domestic settingPhysical activity and enhanced fitness to improve cognitive function in older people without known cognitive impairmentPhysical activity programs for persons with dementiaReality orientation for dementia

35. II Cochrane Reviews and Protocols Selected for Nonpharmacological Interventions (cont) Reviews (cont): Reminiscence therapy for dementia Respite care for people with dementia and their careers Snoezelen for dementia Special care units for dementia individuals with behavioral problems Subjective barriers to prevent wandering of cognitively impaired people Support for careers of people with Alzheimer's type dementia Transcutaneous Electrical Nerve Stimulation (TENS) for dementia Validation therapy for dementia Protocols: Case/care management approaches to home support for people with dementia Cognitive and behavioural interventions for carers of people with dementia Cognitive stimulation to improve cognitive functioning in people with dementia Functional analysis-based interventions for challenging behaviour in dementia Information and support interventions for informal caregivers of people with dementia Multidisciplinary Team Interventions for the management of delirium in hospitalized patients Physical activity for improving cognition in older people with mild cognitive impairment Psychosocial interventions for reducing antipsychotic medication in care home residents

36. II Misuse Atypical Antipsychotic Drugs Legal and Public Policy Issues

37. III IV. Culture change

38. III Culture Change Definitions “Culture change, or a resident-centered approach, means an organization that has home or work environments in which: • care and all resident-related activities are decided by resident; • living environment is designed to be home rather than an institution; • close relationships exist between residents, family members, staff, and community;”

39. III Culture Change Definitions, cont’d • “work is organized to support and allow all staff to respond to residents’ needs and desires • management allows collaborative and group decision –making; • processes/measures are used for continuous quality improvement.” Source: The Commonwealth Fund 2007 Survey of Nursing Homes

40. III Key Areas of Culture Change • Establishing inclusive decision-making • Reinventing staff roles • De-Medicalizing the physical environment • Redesigning the organization • Creating new leadership practices Source: California Healthcare Foundation, 2008

41. III Four Stages of Culture Change

42. III Four Stages of Culture Change, cont’d