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Non-pharmacological Dementia Care: Preventing Challenging Behaviors Social Work Conference Illinois State University Dr. Marty Sparks March 19, 2014 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 Identifying Baseline • Objective Measures – Functional (IADLs, ADLs) – Cognitive (including depression) • Psychosocial and behavioral histories – Personality characteristics – Personal care preferences(likes, dislikes) – Lifelong patterns (background) 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) 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. DSM-5 Diagnostic Criteria Major 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 DSM-5 Criteria: Alzheimer’s Disease A. Criteria are met for major or mild NCD B. Insidious onset and gradual progression of impairment C. 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 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) 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 Instrumental ADLs Prediction 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 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 Basic ADLs Prediction of Loss • Moderately Severe Stage – Dressing, Bathing, Toileting – (pacing, wandering) – (resistance to care) – (agitation, aggr ession) – (hallucinations) • Severe Stage – Continence – Feeding (malnutrition) – Transfer 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 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 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 Lewy Body DSM-5 Criteria C. Disorder meets a combination of core and suggestive diagnostic features (based on numbers of each) 1. 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 Lewy Body DSM-5 Criteria Cont’d 2. Suggestive diagnostic features: a. meets criteria for rapid eye movement sleep behavior disorder b. Severe neuroleptic sensitivity 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 DSM-5 Criteria Frontotemporal 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. 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 Maslow’s Hierarchy of Human Needs (5 Stage Model) Self Actualization Self-Esteem Love Belonging Safety Physiological Contributing Factors for Challenging Behaviors • Unrealistic expectations • Control issues • Anger, anxiety, fear (Threat perception: Jablonski, 2011) • Medications Rethinking Dementia Care Non-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 wellbeing and quality of life. • Prevent boredom; maintain normalcy • Focus on lifelong patterns and preferences Culture Change, Person-centered Care 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 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 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 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 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 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 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 Interactional Interventions Moderate, 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 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 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 Environmental Interventions • Modify according to preference • Use controlled sensory stimulation – Sight – Touch – Hearing – Smell – Taste • Provide inside and outside walking pathways (pacing) 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 Hallucinations Contributing Factors • AD regression – – They are living in different reality – Flash backs • Other dementias 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) 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) 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 Song Demonstrating Sensitivity and Communication when Dealing with Altered Reality • http://www.youtube.com/watch?v=txCUwS Ko1kg Raymond, by Brett Eldredge Non Pharmacologic Interventions Problem 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 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 Pacing/Wandering Interactional/Behavioral Interventions • Anticipate needs, assist to or meet needs • • • • Verbal interaction activities Exercise pattern, regular time daily Social/Recreational activities of interest Relaxation activities Pacing/Wandering Environmental 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 Wandering Environmental Management • Stimulating – meaningful – Birds, bird feeders, games – Windows, picture albums with old pictures – Animals, people Caregivers Most Important People!! Informal Formal 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.) Caregiver Emotions –Conflict –Anger/guilt –Uncertainty –Sadness –Fear, Anxiety –Worry, Burden –Pleasure –Fulfillment –Reward –Satisfaction 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.” (Marquezgonzalez, Lopez, Romero-moreno, Losada, 2012) Family Caregiver • Refer to – Illness-specific Association, other – Illness-specific support group – Attorney; Financial planner – Care alternatives: Adult day care, home health, companion, respite, home-bound meals, etc. – Websites – Counselor Family Caregiver • Provide information about – What to expect – What can be done – How to do what needs to be done – What resources are available – Treatment options – Person to call – How to assess and evaluate services, including nursing homes Caregiver Reminders • • • • • • • • • I can take care of myself I can simplify my lifestyle I can allow others to help I can focus on what patients can still do I can receive love and support from others I can know that I am doing the best I can I can take one day at a time I can sing, laugh, enjoy life I can take some time for myself