Dementia Beyond Drugs: Changing the Culture of Care

1. Dementia Beyond Drugs:Changing the Culture of Care G. Allen Power, MD, FACP St. John’s Home Rochester, NY, USA Colorado Culture Change Coalition September 24th, 2010

2. Overview • Objective: To change your minds about people whose minds have changed • Adult Learning Methods: Provocation and shameless book promotion • Pharmaceutical support: Yeah, right!  • APA certified: Good for brain health

3. Outline • Demographics and drug prescribing patterns • Drug studies revisited • Paradigm-shifting exercises • Introduce the “experiential” model and compare with biomedical model • The “culture change” component • “True stories” • Practical interpersonal approaches • Specific scenarios • Conclusions, Q&A

4. Perspectives “The only true voyage of discovery . . .would be not to visit strange lands, but to possess other eyes, to behold the universe through the eyes of another, of a hundred others, to behold the hundred universes that each of them beholds, that each of them is . . .” - Marcel Proust

5. What’s Wrong… • Our current model is inadequate…

6. What’s Wrong… …and potentially dangerous.

7. Foundations for a New Paradigm Professor Tom Kitwood Founder of Person Centred Care • Personhood remains intact • Interpersonal environment has striking effects on a person with dementia • Potential for growth (rementing)‏

8. Foundations for a New Paradigm DrWilliam Thomas Founder of the Eden Alternative • Rejects institutional model of elder care • Elderhood as a developmental stage • Transformation of long-term care has personal, operational and physical components

9. Many Voices….

10. Dementia Statistics • Over 5 million US adults live with dementia • In 2050, est. 16 million (~100 million worldwide) • Prevalence : 6-8% over 65 30% over 85 • 4% of adults >65 reside in nursing homes • Dementia in 50-80% of people in nursing homes • 5th leading cause of death in people >65

11. Nursing Home SurveyMDS 200640% elders in US NHs – 8 states • 27.6% of all people received antipsychotic in past 7 days, including: • 51.2% of those with “aggressive behavioral symptoms” • 39.5% of those with “non-aggressive symptoms” • 22.6% of those scored as “dementia w/o symptoms” • Overall 7.4% increase from 1999

12. Briesacher BA, et al. (2005)Survey of 2.5 million Medicare recipients, who spent time in US nursing homes from 2000-200127.6% (693,000) were prescribed an antipsychotic(up from 16% in 1995)Only 42% received meds in accordance with NH prescribing guidelines23% (159,000) had no appropriate indication17% (118,000) exceeded recommended doses

13. Antipsychotic Prescriptions • US sales, (20002005): $5.4 billion$10.5 billion (>$17 billion in 2008) • Prescriptions, (20002005): 29.9 million43.8 million (~2.1 million Americans had schizophrenia)‏ • ~40 new antipsychotic drugs in development • Prevalence of use in nursing homes similar in most industrialized nations (about 40% of people with dementia)*‏ *Margallo-Lana, et al. (2001). J. Ger. Psych. 16(1):39-44

14. Behavioral Expressions in DementiaDo Drugs Work? • Studies show that, at best, fewer than 1 in 5 people show improvement Karlawish, J (2006). NEJM 355(15), 1604-1606. • Virtually all positive studies have been sponsored by the companies making the pills • Many flaws in published studies • Two recent independent studies showed little or no benefit Sink et al. (2005), JAMA 293(5): 596-608; Schneider et al. (2006), NEJM 355(15): 1525-1538.

15. Risks of antipsychotic drugs • Sedation, lethargy • Gait disturbance, falls • Rigidity and other movement disorders • Constipation, poor intake • Weight gain • Elevated blood sugar • Increased risk of pneumonia • Increased risk of stroke • Ballard et al. (2009): Double mortality rate (at least three U.S. studies show increased mortality as well) Lancet Neurology 8(2): 152-157

16. Food for Thought • Does dementia cause: - wandering? - calling out? - crying? - aggression? • If someone without dementia did any of these, how would we respond?

17. Food for Thought - 2 • Studies have shown that the vast majority of behavioral expressions can be linked to unmet needs or environmental triggers. • Is there any pill that can satisfy unmet needs? • If there were a pill that made all behavioral expressions disappear without any side effects,should we use it?

18. Food for Thought - 3 • Who is in worse shape? A person with dementia who calls out, wanders, or resists personal care, or A person with dementia who is always quiet and disengaged, and lets staff do everything for them?

19. Food for Thought – 4 • How often do you give Tylenol to a person with fever and chills, without searching carefully for the cause? • How often do we give medication to people with behavioral expressions without searching for the cause?

20. Food for Thought - 5 Who decides when a person needs medication for behavioral expressions: the medical staff or the care staff??

21. Moving Beyond the “Pill Paradigm”

22. “Other Eyes”:The Experiential Model

23. Biomedical Model Experiential Model Dementia defined Progressive, irreversible, fatal Shift in perception of world Brain function Loss of neurons and cognition Brain plastic, learning can occur View of dementia Tragic, costly, burdensome Continued potential for life and growth Research goals Almost entirely focused on prevention and cure Also need to improve the lives of those with dementia Environmental goals Protection, isolation, disempowerment Maintain well-being and autonomy

24. Biomedical Model Experiential Model Environmental attributes Disease-specific living areas Programmed activities Individualized, person- directed care Diverse engagement Focus of care Tasks and treatments Less attention to care environment Relationships Care environment is critical Staff / family role “Caregiver” “Care partner”

25. Biomedical Model Experiential Model View of behavior Confused, purposeless Driven by disease and neurochemistry Attempts to cope, problem-solve and communicate needs Response to behavior “Problem” to be “managed” Medication, restraint Care environment inadequate Conform environment to person Behavioral goals “Normalize” behavior Meet needs of staff and families Satisfy unmet needs Focus on individual perspective Nonpharmacologic approaches Focus on discrete interventions Focus on transforming care environment Overall result High use of meds Continued suffering Decreased well- being Rare use of meds Attention to spiritual & emotional needs Improved well-being

26. Biomedical: “He’s confused, because he has dementia”Experiential: “I’m confused, because I don’t know what he is trying to tell me.”

27. Does cough syrup cure pneumonia? Behavioral expressions are the symptom, not theproblem!

28. Primary Goal:CreateWell-being • Identity • Growth • Autonomy • Security • Connectedness • Meaning • Joy “Wandering” example…

29. Toolkitfor decoding expressions of need • Close, continuous relationships • Knowing people’s stories • Active listening • Communication skills • Role play, “share the experience” • Flexibility and Creativity

30. Transformational Models of Care Structural Operational Personal

31. Role of the Nurse –Personal Transformation Model ideal interpersonal approach and communication skills Teach a holistic, person-first view of people who live with dementia Use person-directed approaches to care Model relationship-based care Model individualized approaches Set up outcomes measurements for improved well-being, medication reduction, etc.

32. Role of the Nurse-Operational Transformation Change care plans to “I” plans Look at wellness in CCPs, not just illness Empower hands-on staff to respond to elders’ needs “in the moment” Empower elders to direct their care (caregiver vs. care partner) Convene meetings to investigate distress and brainstorm new approaches Encourage interdisciplinary solutions Introduce well-being domains into daily operations

33. Role of the Nurse –Physical Transformation Give input into renovation decisions - Furniture placement - Fixtures - Beds and chairs - Room and household layouts - Lighting and acoustic environment to maximize comfort, functional independence, familiarity and accessibility

34. True Stories…

35. General Approach: Basics • At the door  knock, identify, ask permission to enter • Re-introduce yourself • Sit down – face to face, eye level • “Eye of the hurricane” • Physical space, comfort, quiet • Optimize hearing and vision • Center yourself

36. Basics (cont.) • Speak slowly and clearly (not loudly) • Allow time for processing and response • Eye contact, facial expression, non-verbal cues • Project calm, kindness, empathy • Appropriate touch • Active listening (Clarify, Rephrase, Reflect, Summarize)

37. Other Aids to Communication • Allow time for people with aphasia to speak • Don’t cut off, but do help fill in ideas to assist and confirm understanding • Look for “back doors” to aphasia (music, art, pictures, emotional triggers) • Look at context and emotional content of statements, not details of words • Always validate feelings

38. Tips for Understanding “Getting past the words”: Six common scenarios

39. 1) Word Substitutions • Allow space for response • Repeat word or phrase back for clarification • Rephrase question back • “Indirect repair” • Use context and environment to make educated guesses • Look for “loaded” words • Watch for word substitutions in listening too!

40. 2) “Third Person” Speech • Can be related to the person herself • May relate to a recent event • Look for emotional content more than factual

41. 3) Confabulation • Common in alcohol-related dementia • Seen in other forms as well • Memory gaps are “filled in” with false information • Not a delusion! No need for medication • Usually no emotional distress unless challenged • Helps supply a complete worldview

42. 4) Emotional Amplification of Speech Problems • Aphasia can change with emotional state • Anxiety and agitation create additional barriers to communication • Center Yourself • Quiet environment • Body language • Listen to emotional content of words • Validation • Move from simple and non-threatening conversation more complex and emotion-laden

43. 5) Reverting to a Prior Language • Use translator whenever able • But… beware of limitations (language mismatches, personal interpretations or “spin”, other word-finding issues)

44. 6) Tangential or “Nonsense” Speech • Optimize space, quiet • One staff member only • Look past words (face, body language, mood) • Listen for key words or phrases and repeat back • Listen to emotional content of words and try speaking to emotion instead of facts • “Gibberish” can be “self-massage” • “Lead by following” (Jane Verity)

45. “Saving Face” • Asking for info can be frustrating and fatiguing • Practice the “fine art of asking questions” • Help fill in gaps while conversing • Recall an event and let elder add as able • Don’t diminish elder’s recollection • Preserve dignity in social situations

46. Investigating Distress • Medical Audit - Acute illness - Medications • Environmental Audit - Pain, temperature, toilet, food/drink, repositioning, over- or under-stimulation • Experiential Assessment - Life history - Role play - See the world through his/her eyes - Look for meaning in behavioral expression

47. Approach to Distress • Consider distress to be legitimate, don’t trivialize or challenge, (his/her reality is the one that counts!) • Approach alone, calm, centered • Caring demeanor – voice, face, body language • Begin by validating emotion • Words won’t be heard till there is an emotional connection • Move conversation to a less emotional place • To re-orient or not?? • Investigate triggers

48. Physical Aggression • Acute situation 1) Provide safety for all 2) Create space 3) Restore calm 4) Debrief

49. Safety and Space • Move other people away • Disengage yourself • Position safely if able and create more personal space

50. Restore Calm • Only one person interacts • Clear lines of sight • Placid facial demeanor (Take the message out of your face and put it back into your words!) • At or below eye level • Calm, steady voice • Avoid smiles or “singsong” voice • Do not argue or dispute; validate distress