1. Dementia Care Without Restraints: Think Critically and Change Practices Anthony Chicotel Staff Attorney California Advocates for Nursing Home Reform

2. This is Reggie and Cal

3. The Intro Behavioral challenges associated with dementia are expression of need, not “symptoms.” Medicalizing the the problem means medicalizing the response: 60% of nursing home residents receive a psychoactive drug. A least medicating approach, based on relationships, is superior for health, safety, and quality of life.

5. Drug Classes Drugs Used to Change “Behaviors”: 1) Anti-Depressants (e.g. Zoloft, Celexa) 2) Hypnotics (e.g. Remeron, Ambien) 3) Anti-Anxieties (e.g. Ativan, Xanax) 4) Anti-Psychotics (e.g. Zyprexa, Risperdal, Seroquel, Haldol) 5) Misc.: Depakote, Neudexta

6. Why Do We Give These Drugs to People with Dementia? We don’t know what else to do.

7. Antipsychotics: Risks Galore, Including DEATH Side Effects: too many to name - strokes, falls, dizziness,weakness, headache, tardive diskinesia Some side effects are the symptoms the drugs are supposed to treat: agitation, restlessness, confusion, delirium, cognitive decline, seizures Black Box Double risk of death for elderly with dementia (FDA Black Box warning)

8. DART-AD Study No. of Months on Antipsychotic Survival Rate (%) of those Who Continued to Receive Antipsychotic Survival Rate (%) of those Receiving Placebo 127077 244671 363059

9. New Dementia Drug X Benefits Relieves Pain Reduces Anxiety Easier Sleeping Light Euphoria Side Effects Sedation Reduced Activity Some Withdrawal when Discontinued

10. Dementia Drug X is Real

11. Define the Problem Care providers perceive explainable actions/reactions of residents with dementia as a “behavioral and psychological symptom of dementia.” When behavior is a symptom, it becomes medicalized. Instead of a human problem, it becomes a medical problem necessitating medical intervention.

12. Hallmarks of Dementia  Memory Loss  Confusion  Loss of Ability to Communicate So what does this mean?

13. This often means Loss with attendant sadness Decreased activity Discomfort Fear Less ability to meet immediate needs Less ability to engage help Immeasurably exacerbated in an institutionalized or congregate living setting

14. Think about it “Behaviors” are not symptoms of dementia - they are the natural response to distress and unmet needs. What we are observing are behavioral and psychological symptoms of being a person with lots of confusion and no way to verbally communicate.

15. A crying baby What do you do? a)Give them drugs or b)Tend to their needs and comfort them?

16. Why Psych Drugs Fail Psych drugs sedate – less activity, more falls, more incontinence, more confusion Psych drugs do not resolve the underlying problem that led to the behaviors, so problems worsen Sedation + Masking the Problem = Negative Outcomes, including doubling the risk of death

17. A Different Approach: Least Medicating Behavior is communication. Know the care recipient (relationships as the new medicine). Meet them where they are.

18. Least Medicating Approach (cont’d) Almost all behavior has a discernible cause – you have to think it through. Team Approach: use staff, family, and experts to find the right intervention. Agitation is easier to prevent than to treat. Drugs only as last resort

19. Comfort-focused Care Prophylactic Pain Management Culture Change components: liberalized diet, personalized sleeping and showering schedules Active observation, notation, and collaboration Comfort as the goal of every experience

20. Relationships Our needs survive our ability to consider and convey them Biological needs – food, shelter, activity Psychological needs – choice, control, connection Validation therapy, Music & Memory, activity programs – what do they have in common? Knowing who they were and who they are and loving them both

21. A New Standard of Care AHCA: These drugs don’t get to the heart of the reason for the person’s actions. Leading Age: Antipsychotics rarely help and present significant dangers. AMDA: I do not prescribe antipsychotic drugs for treatment of agitation or other behaviors in patients with dementia. APA: Antipsychotics ought to be the last resort for dementia. Dr. Jonathan Evans: The use of these drugs represents a failure.

22. Nursing Home Law Demands Good Dementia Care Informed Consent No Unnecessary Drugs Chemical Restraints Prohibited Gradual Dose Reduction

23. This is Chemical Restraint imposed for purposes of discipline or convenience, and not required to treat the resident's medical symptoms (42 C.F.R. Sec. 483.13(a)) Convenience: any action by the facility to control or manage a resident’s behavior with a lesser amount of effort. Neurologic Suppression is ALWAYS the goal.

24. Informed Consent?

26. No Unnecessary Drugs Inadequate Indications for Use: http://www.cms.gov/manuals/Do wnloads/som107ap_pp_guid elines_ltcf.pdf (F-Tag 329, 42 CFR 483.25(l)) wandering; poor self- care; restlessness; impaired memory; mild anxiety; insomnia; unsociability; inattention; fidgeting; uncooperativeness; behavior that is not dangerous to others

27. Gradual Dose Reduction Residents who use antipsychotic drugs receive gradual dose reductions, and behavioral interventions, unless clinically contraindicated. (42 CFR 483.25(l))

28. Law is Good, Enforcement WEAK Approximately 95% of federal deficiencies are “no harm” Ojai Gardens

29. National Initiative to Improve Dementia Care and Reduce Antipsychotic Use Led by CMS, a collaborative education campaign to reduce AP use in nursing homes has led to a 14% reduction since 2012. In California, the reduction has been 16%.

30. One County’s Story “There’s a Problem” Symposium, March 2011 “Comfort Care as the Alternative” Symposium, August 2011 “Local Adopters Lead Other Providers” Symposium, March 2013 Local group of stakeholders meet bi-monthly, watch statistics closely Next: training for doctors, focus on laggards

31. One County’s Results 4 th Quarter 2010 Nursing Home AP use: 19.07% 2 nd Q 2014: 13.57% (29% reduction) Antianxieties down 16%, Antidepressants down 13%, and Hypnotics down 48%

32. Resources  https://www.nhqualitycampaign.org/files/Dementia_Car e_Training_Crosswalk.pdf https://www.nhqualitycampaign.org/files/Dementia_Car e_Training_Crosswalk.pdf  Dementia Beyond Drugs

33. The CANHR Campaign www.canhr.org/stop-drugging

34. Thank you for your attention!