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Dementia Beyond Drugs: Changing the Culture of Care

Overview. Objective: To change your minds about people whose minds have changedAdult Learning Methods: Provocation and shameless book promotionPharmaceutical support: Yeah, right! ?APA certified: Good for brain health. Outline. Demographics and drug prescribing patternsDrug studies revisitedParadigm-shifting exercisesIntroduce the

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Dementia Beyond Drugs: Changing the Culture of Care

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    1. Dementia Beyond Drugs: Changing the Culture of Care G. Allen Power, MD, FACP St. John’s Home - Rochester, NY, USA Tsao Foundation - Hua Mei Centre for Healthy Aging 13 September, 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” Can we reverse dementia?? 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.

    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 Survey MDS 2006 40% 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

    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 Dementia Do 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

    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 the problem!

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

    29. Toolkit for 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

    31. True Stories…

    32. Research Limitations Vested interests Single intervention limitations Nature of transformative models Need for new tools, positive outcomes “Moral imperative”

    33. Studies of Transformed Models Fossey, et al. (2006), and Rovner, et al. (1996), showed that teaching care partners basics of person-directed care significantly decreased psychotropic medication use in residents with dementia BMJ 332: 756-761 and JAGS 44(1): 7-13. Ray, et al. (1993) gave an educational program to doctors, nurses and staff that resulted in a 72% decrease in antipsychotic use, vs. 13% in control homes Arch Int Med 153: 713-721 Cohen-Mansfield (2001), and Ayalon, et al. (2006), found care partner training and support instrumental in the success of non-pharmacologic management of dementia in nursing homes and reduction of medication use Am J Ger Psych 9(4):361-381 and Arch Int Med 166(20): 2182-2188

    34. Studies, (cont.)

    35. Can we reverse dementia??

    38. Conclusions Each person with dementia has a unique path and individual needs. In spite of deficits, many complex abilities are preserved and should be identified and cultivated. The brain remains plastic, and new learning can occur. The primary task for enlightened care is to grow meaningful relationships throughout the care environment. The manner in which we approach people and provide care has profound effects on their abilities and overall well-being.

    39. Conclusions (cont.) Well-being is not dependent on one’s cognitive or functional level, and should be maximized in all people. Think of people with dementia as inhabiting a parallel universe—same space and time, but somewhat different rules and values. We must go there to find common ground for care. We must find unmet needs and adapt the care environment to meet them. The world of the person with dementia changes over time, and so we must also change our approach and adapt to their evolving needs. We must use creativity and collaboration to create a life worth living for all.

    40. Perspectives “When the facts change, I change my mind. What do you do, Sir?” - John Maynard Keynes

    41. Thank you! Questions? apower@stjohnsliving.org 585-760-2639 www.alpower.net

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