Part II Dementia Beyond Drugs: Implementing the Experiential Model

1. Part IIDementia Beyond Drugs:Implementing the Experiential Model G. Allen Power, MD, FACP St. John�s Home - Rochester, NY, USA Tsao Foundation � Hua Mei Centre for Successful Aging 14 September, 2010

2. Agenda Review Experiential Model Behavioral expressions as unmet needs Importance of culture change General approach to people with dementia Communication tips Approaching anxiety and distress Physical aggressiveness Delusions and hallucinations Conclusions

3. Basic Tenets of Culture Change The institutional model of long-term care is inadequate to the needs of our elders We need a paradigm-shift, to a person-directed, relationship-based model of care Care should be individualized, putting the person before the disease Transformation of the care environment has personal, operational and physical components

4. The �Dementia Shift� The biomedical approach to dementia is inadequate to the needs of our elders We need a paradigm-shift, to a person-directed, relationship-based model of care Care should be individualized, putting the person before the disease Transformation of the care environment has (inter)personal, operational and physical components

5. �Ramps� for Dementia? Wheelchairs and disability access Creating a world where people can continue to succeed Applications for dementia What causes distress? Mindset - Disease vs. Disability

6. Dementia Beyond Drugs �Basic Paradigm Shifts Views dementia as � a shift in the way a person experiences the world� Continued opportunities for learning and growth Behavioral distress as a symptom of unmet needs Basic flaw in the philosophy of treating distress with pills Creating well-being�not removing behavior�is primary goal Seeing through the other person�s eyes is critical to understanding and communicating

7. Critical Role of the Nurse in the New Paradigm Nurses are ideally positioned to recognize needs and create the proper response Nurses can set the tone of the living environment Nurses control the use or avoidance of medication! Nurse assessments can identify potential medical illness Nurses can advocate positively with medical staff Nurses can take the lead in educating staff, families and other elders

8. Transformational Models of Care

9. 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.

10. 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

11. 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

12. Case Presentation M.M., 94 y.o. single male Lived in assisted living for 2-1/2 years History of slowly progressive dementia x several years Folstein mini-mental status score 12/30 a year earlier Independent with ambulation and other ADLs Increased aggression and agitation ? medications prescribed Increased falls and decline in functional status 9/15/02 fall ? hospital admission CT head: No acute change, but evidence of old strokes Aggression in hosp. ? meds adjusted Unable to return to apt. ? transferred to St. John�s Home 9/18/02

13. Case Presentation (cont.) Meds on admission - risperidone 1mg bid, donepazil 10mg qd, lisinopril 5mg qd, acetaminophen PRN PE (9/18)- Stable vital signs, long hyperkeratotic toenails Neurologic - lethargic, barely arousable; left corneal opacity and blindness; could not respond to questions or even simple commands, such as hand squeeze; minimal tone with arm lift & drop, some spontaneous movement of extremities; no tremor, but increased tone, not definitely cogwheeling; negative Babinsky reflexes. Initial treatment - risperidone and donepazil cut in half

14. Case Presentation (cont.) 9/20 - Arousable, but with eyes closed, thought he was on West Main St, gave age as �32�; did not recall recent events or name of prior facility, drifted off during pauses in questioning PE - poor cooperation. No rigidity of extremities seen. Next several days: increased alertness, but very confused - multiple attempts to get out of bed or chair - tried PVC walker, but still agitated and tipped it over once - aggressive with care, with inappropriate touching / grabbing of staff - frequent use of obscene language with staff and others Risperidone changed to quetiapine 50mg bid, donepazil tapered off, divalproex sodium started

15. Case Presentation (cont.) 10/3/02 - Discussed in a teaching session with nursing staff on floor Extreme frustration and anger, �He doesn�t belong here!�, �He should be in a neurobehavioral unit!� Staff concerned about aggression and sexual behavior, not wanting to provide his care Constant restlessness, problems keeping him in bed at night Anger at me for not �doing something� to fix the problem Requests for increased meds and restraints Pessimism regarding his potential for improvement, and our ability to care for him

16. Case Presentation (cont.) I offered no changes in meds, continue quetiapine/valproic as ordered Long list of interventions suggested to: - maximize freedom of movement (no restraints; use alarms, frequent ambulation, judicious use of PVC walker) - avoid �traditional� rec. programs; center activities around doing ADLs with kind and positive conversation - provide care in small �bite-sized� chunks - use music and reminiscence, (appropriate) touch - follow his lead on sleep/wake, and move to common areas when awake, where he can watch and be watched - bring in familiar belongings to room

17. Case Presentation (cont.) Suggestions (cont.) - review work and social history with family for more clues - specific guidelines discussed on how to respond consistently to sexual comments or gestures - allow more time for him to adjust Staff attentive, but skeptical Over the next few weeks, the phone calls diminished to none. Next teaching session, 3-4 weeks later, another case was presented. I asked about Mr. M, and responses indicated improvement in behavior, increased staff familiarity and increased staff ability to cope with and respond to occasional outbursts. No anger or frustration evident. 2/03 - Quetiapine taper started, followed by valproate 11/07 � Passed away peacefully � no meds for 4-1/2 years!

18. Transformational Models of Care

19. 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

20. 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)

21. 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

22. �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

23. 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

24. 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

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

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

27. 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

28. Debrief Listen during calming and validation for clues to causes Ask how you can help Active listening Maximize the person�s sense of control If unable to calm, maximize safety and leave Follow-up with medical, environmental and experiential audits (acute illness, depression, constipation etc.)

29. Personal Care Find best time(s) Re-introduce and explain each step before proceeding Maximize autonomy and choice within framework of care Break care into �bite-sized� chunks Learn Joanne Rader�s bed-bath technique �SEE� � Slow down, Empower, Engage

30. Delusions and Hallucinations Generally over-diagnosed �Hallucinations� often due to misperceptions (visual problems, light and shadows, reflections, auditory miscues, disembodied voices and sounds) or delirium (due to meds or acute illness) �Delusions� and �paranoia� may be due to forgetting, or may have basis in reality

31. Don�t jump to conclusions about those �delusions�!

32. Find Experiential Causes �They don�t like me here� �Someone stole my purse� �I hear voices at night� �I was raped� �They�re poisoning the food�

33. Non-Pharmacologic Approach Consistent care partners, relationships Maximize day-night cues Optimize lighting and hearing Quiet night-time environment Eliminate overhead pages, intercoms Avoid conversations outside the room Minimize polypharmacy

34. 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.

35. 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.

36. Thank you!Questions?apower@stjohnsliving.org1-585-760-2639www.alpower.net