Non-pharmacological Dementia Care: Preventing Challenging Behaviors

1. Non-pharmacological Dementia Care: Preventing Challenging Behaviors Social Work Conference Illinois State University Dr. Marty Sparks March 19, 2014

2. Content Outline • Establishing baseline • Definition: Diagnostic Criteria • Theory/evidence base • Retrogenesis (Reisberg) • Hierarchy of Human Needs (Maslow) • Interventions to address • Conference objectives • Stage and need • Challenging behaviors • Participant comments/questions

3. Identifying Baseline Objective Measures Functional (IADLs, ADLs) Cognitive (including depression) Psychosocial and behavioral histories Personality characteristics Personal care preferences(likes, dislikes) Lifelong patterns (background)

4. Identifying Baseline Background Information Cultural, societal factors Environmental factors Interactional factors (Key concepts: patient’s characteristics, life story, and environment – to individualize guidelines (Vickland, 2012)

5. Use of Baseline Information • To tailor care to the needs of the person • To tailor care to the capabilities of the person • To make care consistent with the individual’s life context.

6. DSM-5 Diagnostic CriteriaMajor Neurocognitive Disorders (NCD) A. Evidence of significant cognitive decline from previous level in one or more domains (learning and memory, attention, executive function, language, perceptual-motor [visual perception, praxis, gnosis], social cognition) B. Cognitive deficits interfere with independence in everyday activities. C. Cognitive deficits not exclusively in context of delirium D. Not better explained by another mental disorder

7. DSM-5 Criteria: Alzheimer’s Disease • Criteria are met for major or mild NCD • Insidious onset and gradual progression of impairment • Criteria met for probable or possible AD: 1. Evidence of genetic mutation 2. All three of the following: a. Decline in memory and learning and at least one other cognitive domain. b. Steadily progressive, gradual decline in cognition, without extended plateaus c No evidence of mixed etiology D. Not better explained by CVD, NDevelopmentalD, effects of substance, or another disorder

8. Retrogenesis Theory As the disease progresses, the patient’s knowledge and skills (physical, social, coping) regress in reverse developmental order, and responses may be influenced by memories of the corresponding developmental stage of childhood. (Reisburg et al., 1984-2002)

9. Advantages to Reverse Development Approach Don’t expect person to behave like normal adult Know that interacting with as though fully functional adults causes more harm than good View behaviors as normal for stage, not as problematic Illness becomes predictable, understandable We know approaches that work We meet their needs rather than expect them to meet ours

10. Instrumental ADLsPrediction of Loss Mild Stage Managing Money Managing Medications (communication changes) (awareness, ?denial or depression) Moderate Stage Managing Transportation (Driving) Shopping Doing Housework/Laundry Preparing Meals Using Telephone

11. Phone • Normal usage • Call with programmed phone or list of numbers • Answer phone • Talk if handed phone • (Out of sight, out of mind) • Unable to use

12. Basic ADLsPrediction of Loss Moderately Severe Stage Dressing, Bathing, Toileting (pacing, wandering) (resistance to care) (agitation, aggression) (hallucinations) Severe Stage Continence Feeding (malnutrition) Transfer

13. Dressing Must reassess each day to know what they can do Lay out clothes Hand clothes to them in order Start arms into sleeves/legs into pants Button buttons, zip zippers No pull overs, comfortable clothing Put clothing on for patient

14. Eating Set up plate Prepare food on plate – cut, butter, Hand utensil Have finger foods Ignore forgotten manners Assist feed Feed more often Alter consistency of foods Use high nutrition, supplemental drinks

15. Fluids Regular container any place Supervised drinking Place container in hand Plastic container with lid Assist to hold container Hold container and give fluids Sports cup and/or straw Unable to drink

16. Lewy Body DSM-5 Criteria C. Disorder meets a combination of core and suggestive diagnostic features (based on numbers of each) • Core diagnostic features: a. Fluctuating cognition with variations in attention and alertness. b. Recurrent visual hallucinations: well formed and detailed c. Spontaneous features of parkinsonism, after cognitive decline starts

17. Lewy Body DSM-5 Criteria Cont’d • Suggestive diagnostic features: a. meets criteria for rapid eye movement sleep behavior disorder b. Severe neuroleptic sensitivity

18. NCD due to Parkinson’s Disease • Mild or major neurocognitive disorder met. • Occurs after Parkinson’s disease has been established. • Insidious onset and gradual progression • Not attributable to another medical condition • No evidence of mixed etiology • Parkinson’s disease clearly precedes

19. DSM-5 CriteriaFrontotemporal NCD C. Either 1 or 2 1. Behavioral variant: a. Three or more of the following i. Behavioral disinhibition ii. Apathy or inertia iii. Loss of sympathy or empathy iv. Perseverative, steroptyped or compulsive/ritualistic behavior v. Hyperorality or dietary changes.

20. Frontotemporal NCD: DSM-5 Criteria b. Prominent decline in social cognition and/or executive abilities 2. Language variant: a. Prominent decline in language ability (speech production, word finding, object naming, grammar, or word comprehension) D. Relative sparing of learning and memory and perceptual-motor function

21. Maslow’s Hierarchy of Human Needs (5 Stage Model)

22. Contributing Factors for Challenging Behaviors • Unrealistic expectations • Control issues • Anger, anxiety, fear (Threat perception: Jablonski, 2011) • Medications

23. Rethinking Dementia CareNon-pharmacological Approaches • Meet person’s needs rather than forcing person to conform to needs of setting. • Focus change on transforming the environment not the person. • Address spirit and psyche to increase well-being and quality of life. • Prevent boredom; maintain normalcy • Focus on lifelong patterns and preferences Culture Change, Person-centered Care

24. Communication Regression Mild Stage Repetitious Difficulty word finding/difficulty spelling Lose train of thought Can use reminders Can make decision, use logic (sometimes) May want to retain control

25. Communication Regression Moderate Stage • Usually understandable communication in known situations/about known topics • Can process one-command requests • Can answer yes-no questions • Withdraw/Less verbal communication • Difficulty organizing words logically

26. Communication Regression Moderately Severe Stage Words don’t make sense or fit the situation Respond according to other’s behavior Respond according to early life/ life long experiences Decreased verbal communication Maintain social graces Have lucid moments

27. Communication Regression Severe Stage • Except for lucid moments, no verbal communication • Decreased non-verbal communication • Continues to respond to non-verbal communication • May vocalization in non-language

28. Interaction/Behavioral Interventions All Stages by Need Esteem (Independence) • Respect, honor • Call by preferred name (recognize) • Be calm, don’t raise voice or argue • Talk about things familiar, meaningful to patient (reminisce); Use clear, direct statements • Negotiate, collaborate, partner • Allow to do everything possible; unobtrusively do what s/he cannot do • Focus on strengths; acknowledge, don’t emphasize, deficits

29. Interaction Interventions All Stages by Need Love/Belonging • Allow flexibility, negotiate, collaborate • Simple greeting, careful listening • Gentle touch, subtle wave • Briefly orient to room, unit, schedule • Keep tone low and pleasant • Display a level of affection and sense of humor • Music: Method and type may vary by stage

30. Interaction Interventions All Stages by Need Safety/Security • Address fear of abandonment • Family member present • Be with, affirm support • Social conversation, speak softly • Read, sing to/with • Don’t confront, force, or control • No violence on TV/DVDs

31. Interactional InterventionsModerate, Moderately Severe, Severe Stages • Don’t reorient • Don’t use logic • Reminisce • Distract, redirect • Foster peace • Respond as though words make sense • Use concrete language

32. Interactional/Behavioral Intervention: Play Spontaneity and self-expression Joy in the moment (linger in moment) Enjoyable now (coffee/cookie break) Capacity to suspend logic Lifelong pleasures Children, pets present

33. Nonverbal Communication Touch/hold hand Light Massage/smooth brow Smile/Laugh/facial expression Be in line of vision Provide loving care Keep comfortable Gift of presence Protect from embarrassment Guide patient in unobtrusive manner Environmental changes

34. Environmental Interventions Modify according to preference Use controlled sensory stimulation Sight Touch Hearing Smell Taste Provide inside and outside walking pathways (pacing)

35. Environmental Interventions To prevent resistance during bathing: • Accommodate preference: shower, tub, bed; morning, evening; covered, uncovered • Pleasant: Colorful, private, heated floors, soft music, no glare, plants • Needed objects: In sight, organized • Water temp of choice, pleasant aroma • Temperature warm, warm towel/bath blanket • Handheld shower head – no water on face

36. HallucinationsContributing Factors • AD regression – • They are living in different reality • Flash backs • Other dementias

37. Non-Frightening Hallucinations Acknowledge the hallucination Talk about it Enter their reality Move to reminiscence Then to distraction Have an enjoyable conversation (Deal with own discomfort)

38. Frightening Hallucinations • Acknowledge, talk about • Work to resolution maybe using validation therapy (Naomi Feil) • Remove the frightening object (good lighting may help) • Stay with • Observe for recurrence (Deal with own discomfort)

39. Terminal Hallucinations(Awareness of Death) Angels and/or departed family member • Usually the gift of presence/therapeutic use of self is appropriate (silence, being with) • Maybe say, ‘Nice to see them again.’ or ‘Comforting, isn’t it?’ • Base words and behaviors on patient’s behavior

40. Song Demonstrating Sensitivity and Communication when Dealing with Altered Reality • http://www.youtube.com/watch?v=txCUwSKo1kg Raymond, by Brett Eldredge

41. Non Pharmacologic InterventionsProblem Behaviors(AAN) Music, during meals and bathing; walking or other light exercise (Guidelines) Practice Options Simulated presence therapy, such as the use of videotaped or audio-taped family Massage; Pet therapy Requests made at the patient’s comprehension level

42. Pacing and Wandering Contributing Factors • Physical or psychological need • Thirst/hunger, Elimination • Discomfort • Interaction • To ‘go home’ or fulfill former obligations • Internal restlessness r/t illness or medication

43. Pacing/WanderingInteractional/Behavioral Interventions Anticipate needs, assist to or meet needs Verbal interaction activities Exercise pattern, regular time daily Social/Recreational activities of interest Relaxation activities

44. Pacing/WanderingEnvironmental Management Safety – when constantly walking Safe inside and outside walking paths Fenced yard, door knob covers or locked doors, gates, visual barriers(shear curtains, camouflage) Decorate soft, uncluttered walkway No breakables, sharps within sight/reach Medicine out of sight/reach Strategically placed chairs or broad-based rockers

45. WanderingEnvironmental Management • Stimulating – meaningful • Birds, bird feeders, games • Windows, picture albums with old pictures • Animals, people

47. CaregiversMost Important People!! Informal Formal

48. Needs Identified by Caregivers • Emotional and social support • Information • Financial support • Accessible and appropriate facilities • (Vaingankar, et al., 2013) Challenging behaviors occur more often after transfer to a new setting, particularly if there is no known person present. (Replace continuity of care with continuity of setting and caregivers.)

49. Conflict Anger/guilt Uncertainty Sadness Fear, Anxiety Worry, Burden Pleasure Fulfillment Reward Satisfaction Caregiver Emotions

50. Relieving Caregiver Burden by Reducing BPSD • Cognitive enhancer meds (Levy, Lanctot, Farber, Li, &Herrmann, 2012) • CG learning positive care management strategies and ways to react to challenging behaviors (Norton et al, 2013) • Educated, guided involvement in home, residential, or community (Brodaty & Arasaratnam, 2012; Gitlin, Mann, Vogel, Arthur, 2013) • “Spiritual beliefs might help caregivers to find meaning in caregiving and thus appraise …behavioral problems as less stressful.” (Marquez-gonzalez, Lopez, Romero-moreno, Losada, 2012)