Assessing and Managing All Forms of Pain In Dementia:

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1 Handouts are intended for personal use only. Any copyrighted materials or DVD content from Positive Approach, LLC (Teepa Snow) may be used for personal educational purposes only. This material may not be copied, sold or commercially exploited, and shall be used solely by the requesting individual. Copyright 2017, All Rights Reserved Teepa Snow and Positive Approach to Care Any redistribution or duplication, in whole or in part, is strictly prohibited, without the expressed written consent of Teepa Snow and Positive Approach, LLC Assessing and Managing All Forms of Pain In Dementia: Appreciating the Role of Unmet Needs, Stress, and Distress in Dementia Care When will DEMENTIA be a factor for you? - End of dementia end of life - Mid-dementia - with another terminal disease - Early dementia - a caregiver - a non-compliant person - new diagnosis or non-diagnosis - side effect of treatment for another condition In Dementia There is certainly physical pain BUT It is other pain that may be more important emotional pain spiritual pain SO Interventions MUST go beyond the physical! Interventions WILL involve Interventions WILL involve Care providers Environmental supports Schedule re-consideration Dynamic assessment 1

2 The person s brain is dying Normal Brain Alzheimers Brain Learning & Memory Center Hippocampus BIG CHANGE Understanding Language BIG CHANGE Sensory Strip Motor Strip White Matter Connections BIG CHANGES Automatic Speech Rhythm Music Expletives PRESERVED Hearing Sound Not Changed Formal Speech & Language Center HUGE CHANGES 2

3 Executive Control Center Emotions Behavior Judgment Reasoning What happens with Most Dementias? - Two processes - Cells are shrinking & dying - Cells are producing less chemical to send messages Positron Emission Tomography (PET) Alzheimer s Disease Progression vs. Normal Brains Normal Early Alzheimer s Late Alzheimer s Child What Makes PAINFUL SITUATIONS Happen? The Person and Their DEMENTIA! We re trying to help!!!! G. Small, UCLA School of Medicine. What Makes PAINFUL SITUATIONS Happen? SIX pieces - The person & who they have been - Personality, preferences & history - Other conditions & sensory status & meds/fluids/fuels Brain Changes: Dementia: Type(s) Awareness Delirium? Depression? Note GEM Level(s): Changed abilities Retained abilities Variability Self-awareness Onset & duration The Person: Past & Present Life story history Personality traits Preferences likes/dislikes Key values Joys & Traumas Roles Watch-Talk-Do Wellness, Health, and Fitness: Health Conditions & Physical Fitness: Fuel & Fluids Meds & Supplements Emotional & Psychological Condition Sensory Systems Function Health Beliefs of Note Recent Changes- Acute Illnesses - The type & level of cognitive impairment(s) NOW - People - How the helper helps & others - Approach, behaviors, words, actions, & reactions - The environment setting, sound, sights 4 F s - The whole day how things fit together finding balance The Environment: Explore the Four Fs: Friendly Familiar Functional Forgiving Space (intimate, personal, public) Sensations (see, hear, feel, smell, taste) Surfaces (sit, stand, postrate, work) Social (people, activity, role, expectations) People - US: Care Partner & Others Around History - background Awareness Knowledge Skills Competence Relationship(s) Agenda(s) Time: Time Awareness: where in life time of day passage of time Four Categories: (balance) Productive: gives value Leisure: Fun playful Wellness & Self Care Restorative: calm recharge 3

4 Understanding & Responding to: Challenges, Unexpected Behaviors, and Unmet Needs - What is happening? - Why is it happening? - What helps? What makes it worse? - How can we prevent it from happening in the first place? - If it happens again, what can we do to make it better? Why Is Life So Difficult for Those Involved? - MANY abilities are affected - Thoughts - Words - Actions - Feelings - It is variable - Moment to moment - Morning to night - Day to day - Person to person - Place to place - Some changes are predictable BUT complicated - Specific brain parts - Typical spread - Some parts preserved If it is progressive More brain dies over time Different parts get hit Constant changing We Have Two Brains - Cortical the Neo-Cortex - Thinking Brain - Discriminating & Curious - This part of the brain separates us from animals; it allows us to think logically, delay gratification, and see from others perspectives For an In-Control, Non- Stressed, Mature Brain - the NEO-CORTEX leads & directs With an In-Control, Non- Stressed, Mature Brain I am responsive not reactive I figure it out I use effective coping strategies I manage my stressors I balance my needs with the needs of others I balance my life & time I am engaged, curious, and find joy in what I do & where I am With an In-Control, Non- Stressed, Mature Brain I I am responsive not reactive I figure it out I use effective coping strategies I manage my stressors I balance my needs with the needs of others I balance my life & time I am engaged, curious, and find joy in what I do & where I am 4

5 It s all about our AMYGDALA - The Amygdala: - Part of our Limbic System - Threat perceiver - Pleasure Seeker - Part of the engine controlled by the Neo-Cortex - Two parts left and right - Left Amygdala - Right Amygdala DANGER! Left Amygdala turns ON and.. Fight, Flight, Fright Top TEN REAL ISSUES for the Person Living with Dementia! I m HURTING I Need RELIEF Right Amygdala turns ON and.. I NEED IT NOW!!! Emotional Discomfort & Pain Reactions to Unmet Needs Anger Sadness Loneliness or Loss of Control Fear/Anxiety Disengagement/BOREDOM Unmet Physical Needs Intake Tired or Over-energized Elimination need to or did Discomfort not right for me 4 Fs and 4 Ss IN PAIN!!! Organ & organ systems Skeletal or muscular systems Integumentary system Oral or facial Sensory systems Scale of Emotional States Low Amygdala Active Alert Irritated Bothered Medium Amygdala Stressed at Risk Angry Frustrated High Amygdala in Control Endangered Furious Enraged Global Deterioration Scale Dissatisfied Blue Sad Unhappy Devastated Hopeless Missing some Missing freedom/control Lonely Disconnected Confined/restricted Abandoned Isolated Imprisoned Nervous Anxious Scared Worried Terrified Panicked Disengaged Antsy Bored Roaming Useless Purposeless Frantic 5

6 Level 1 No Cognitive Decline No subjective complaints of memory deficit. No memory deficit evident on clinical interview. Level 2 Very Mild Cognitive Decline (Age Associated Memory Impairment) Subjective complaints of memory deficit, most frequently in following areas: (a) forgetting where one has placed familiar objects; (b) forgetting names one formerly knew well. No objective evidence of memory deficit on clinical interview. No objective deficits in employment or social situations. Appropriate concern with respect to symptomatology. Level 3 Mild cognitive decline (Mild Cognitive Impairment) Earliest clear-cut deficits. Manifestations in more than one of the following areas: (a) patient may have gotten lost when traveling to an unfamiliar location; (b) co-workers become aware of patient's relatively poor performance; (c) word and name finding deficit becomes evident to intimates; (d) patient may read a passage or a book and retain relatively little material; (e) patient may demonstrate decreased facility in remembering names upon introduction to new people; (f) patient may have lost or misplaced an object of value; (g) concentration deficit may be evident on clinical testing. Objective evidence of memory deficit obtained only with an intensive interview. Decreased performance in demanding employment and social settings. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms. Level 4 Moderate cognitive decline (Mild Dementia) Clear-cut deficit on careful clinical interview. Deficit manifest in following areas: (a) decreased knowledge of current and recent events; (b) may exhibit some deficit in memory of ones personal history; (c) concentration deficit elicited on serial subtractions; (d) decreased ability to travel, handle finances, etc. Frequently no deficit in following areas: (a) orientation to time and place; (b) recognition of familiar persons and faces; (c) ability to travel to familiar locations. Inability to perform complex tasks. Denial is dominant defense mechanism. Flattening of affect and withdrawal from challenging situations frequently occur. Level 5 Moderately severe cognitive decline (Moderate Dementia) Patient can no longer survive without some assistance. Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. Persons at this stage retain knowledge of many major facts regarding themselves and others. They invariably know their own names and generally know their spouses' and children's names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear. Level 6 Severe cognitive decline (Moderately Severe Dementia) May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and, sometimes, forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will be able to travel to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. 6

7 Level 7 Very severe cognitive decline (Severe Dementia) All verbal abilities are lost over the course of this stage. Frequently there is no speech at all -only unintelligible utterances and rare emergence of seemingly forgotten words and phrases. Incontinent of urine, requires assistance toileting and feeding. Basic psychomotor skills, e.g., ability to walk, are lost with the progression of this stage. The brain appears to no longer be able to tell the body what to do. Generalized rigidity and developmental neurologic reflexes are frequently present. Now for the GEMS - Sapphires - Diamonds - Emeralds - Ambers - Rubies - Pearls A Positive Framework seeing in GEMS - Sapphires True Blue Slower BUT Fine - Diamonds Repeats & Routines, Cutting - Emeralds Going Time Travel Where? - Ambers In the moment - Sensations - Rubies Stop & Go No Fine Control - Pearls Hidden in a Shell - Immobile General Vision Changes - Sapphire lost about 45 o of field - Diamond tunnel vision - Emerald binocular vision - Amber sees parts not whole loss of object recognition - Ruby monocular - Pearl movement, familiar/unfamiliar Receptive Language Changes Sapphires high pitched harder, crowded & loud spaces more challenging Diamonds Slower, missing consonants Emeralds missing about 1/4 words, needs pauses better with rhythm Ambers 2/4 words misses much, catches some key words out of context Rubies social chit-chat, music, rhythm, tone of voice Pearls familiar and friendly, calm or excite 7

8 Expressive Language Changes Sapphires word finding a little slower, pauses Diamonds varies with affect, word finding problems, mis-speaking at times of stress Emeralds gets stuck in social, repeats phrases or words, intonation matters Ambers repetitive, variable volume, echo Rubies less articulated speech, babble, hum or sing, rhythmic vocalizations Pearls sounds to single words, responsive Dexterity Hand Skills Sapphires still intact slightly slower Diamonds Slower, limited with bilateral skilled integration Emeralds individual actions are there, sequencing is challenging, more forceful Ambers heightened use of hands, skilled tool use decreased, strong Rubies whole hand with limited finger use hold and carry, difficulty with release Pearls grasp strong, limited opening Body Skills Sapphires sustained - slower Diamonds details not as good, globally Ok Emeralds better with dominant side, errors Ambers strong more than skilled, limited safety awareness Rubies whole body not segmented, front ok back not Pearls reflexive, great trouble with gravity or speed or movement People Awareness Skills Sapphires sustained slower to ID Diamonds recent?, older/deeper better Emeralds recognize like/not like, Ambers can get lost in old-new relationships, will like or not like in the moment Rubies like or not like, familiar versus not Pearls voices, faces, touches, smells familiar or not Place Awareness Skills Time Awareness Skills Sapphires sustained turned around Diamonds familiar feels best gets lost in community & in unfamiliar places Emeralds if OK with what is seen is OK, if not OK seeks the old familiar task or social Ambers OK if here feels OK, otherwise will seek there Rubies may or may not have a destination more a movement or stillness pattern Pearls is what is experienced comforting Sapphires lifelong crunched or expanded Diamonds more the past than now Emeralds lost in episodes or caught in loops Ambers in the moment not the task or sequence Rubies in the experience, not the time Pearls time has much less meaning 8

9 Situation Awareness Skills Sapphires sustained tough to think Diamonds old emotions drive new interactions Emeralds has moments of time travel Ambers more sensory awareness than intellectual awareness, immediate not big picture Rubies only in moments, less body aware Pearls more inside than externally aware So How Does This Impact Pain Assessment? - Assume that your clients will have pain - Lack of response doesn t mean lack of pain - Use more than your questions and their answers to assess for pain - Health history - Physical exam findings - Functional and behavioral changes - Beyond the person to the situation - Reassess routinely and with greater frequency AND - Assess with more than your ears what you see, what you feel with your fingers and with your heart. Dementia - People with dementia and hip fracture - Received as many procedures - Received ¼ of the pain medications when compared with people without dementia (JAMA 2000) Questions - Do people with dementia have less pain? - Do people with dementia have more pain? Introvert How Head First Plan Ahead copyright Positive Approach to Care Do people with dementia have the same amount of pain? Extrovert Why Heart First Go with the Flow 9

10 How Might Personality Traits Affect Pain Behaviors and Assessment? Introvert Wants ALONE think/feel time Wants to think it out inside Sensitive to space/boundaries Wants to control access to space and belongings Likes privacy Keeps home/work separate Wants prep time before doing Tends to internalize & self-rate Gets quiet & retreats when stressed or distressed Wants a sense of control Answers tend to be final Extrovert Wants PEOPLE time Wants to explore with others Thinks out LOUD Asks questions Wants talk time to talk it through & to prep WITH another person Boundaries are flexible Space is to be shared Connection trumps control Seeks others approval & opinion Talks more & seeks more intimacy when stressed How To Do It Wants to know how to do something before doing it Likes specifics & checklists Likes directions to follow Finds comfort in the familiar & the routine Wants expectations clearly spelled out Likes facts & evidence before doing New learning increases anxiety until it is routine Why To Do It Wants to know why something is being done before doing it Belief in the value is critical Wants the big picture Details tend to be boring Likes to try it out and see what happens Likes to try variations not just repeat Drill practicing is NOT exciting Is excited & energized by new learning Logic/Reason First Wants it to be FAIR & Equal Likes everyone to be judged under one set of rules May see individualization as favoritism Likes to solve problems Enjoys being right Tends to explore conflict Likes & wants information Wants data to analyze Seeks to understand the reason behind the behavior Feelings First Wants it to feel OK to all Wants harmony in the space Seeks to find common ground Likes when everyone is comfortable with decisions Monitors opinions/feelings Enjoys being kind & helpful Likes to lift spirits Feels case by case is better than a standard rule Seeks to appreciate the emotions behind behavior Plan Ahead Wants to PLAN ahead & follow the PLAN Uses schedules & lists Aware of time & its passing Works toward deadlines Wants a detailed plan to stay on target Becomes anxious with last minute changes Likes final decisions & finishing projects Focus: Looking ahead what s next? Go with the Flow Works in the moment Limited awareness of the passage of time Flexible with time and plans Deadlines are suggestions of when to get going or get done Final decisions are difficult Drafts are better revisit Re-sets priorities based on new info adaptable Delays allow more input or changes that improve Focus: what s happening now? DEMENTIA How Might Different Types of Dementia Affect Pain and Perception of Pain? Alzheimer s Disease Young Onset Late Life Onset Vascular Dementias (Multi-infarct) Lewy Body Dementia Diffuse LBD Parkinsonian type dementia Fronto- Temporal Lobe Dementias Other Dementias Genetic syndromes Metabolic pxs ETOH related Drugs/toxin exposure White matter diseases Mass effects Depression(?) or Other Mental conditions Infections BBB cross Dementia does not equal Alzheimers does not equal memory problems Four Truths About Dementia - At least 2 parts of the brain are dying - One related to memory & the one other - It is chronic can t be fixed - It is progressive it gets worse - It is terminal it will kill, eventually Positive Approach, LLC

11 What s What For Each D What s What? Dementia Delirium Depression - Onset - Hx & Duration - Alertness & Arousal - Orientation responses - Mood & Affect - Causes - Treatment for the cause/condition - Treatment for the behavioral symptoms Determine First Is this Dementia, Delirium, OR Delirium? - Delirium can be dangerous & deadly - Get a good behavior history look for change - Assess for possible PAIN or discomfort - Assess for infections - Assess for med changes or side effects - Assess for physiological issues dehydration, blood chemistry, O 2 sat - Assess for possible emotional or spiritual PAIN 2 nd Is it Dementia or Depression - Depression is treatable - Many elders with depression describe themselves as having memory problems or having somatic complaints - Look for typical & atypical depression - Look for changes in appetite, sleep, self-care, pleasures, irritability, can t take this, movement, schedule changes If it looks like dementia Two Gems of REAL Interest - Explore possible types & causes - Explore what care staff & family members know and believe about dementia & the person - Determine stage or level compared with support available & what we are providing - Seek consult and further assessment, if documentation does NOT match what you find out Thinking brain leads In control of self monitors and meets internal needs as needed Other-focused while self-aware Flexible Sapphire Can switch views & topics with ease Can see from multiple viewpoints Transitions are easy Diamond Habits and Routines lead Primitive brain fires up easily Situations and people trigger reactive behaviors Self-focused NEEDS Needs it NOW Needs it MY WAY Trouble getting started, sequencing thru, finishing, or moving on Over-estimates or underestimates abilities 11

12 Pain Management Guidelines - Establish relationship - Assume there will be pain - Be alert - Look, listen, feel for pain - If it would hurt you assume it hurts them - When there is a change in BEHAVIOR check out the possibility of PAIN first! - Connect to the person before you try to fix it - Use acetaminephine REGULARLY not prn What Can & Does the Person Do? Diamond (GDS 3-4-5) - Completes personal care without help - Follows simple directional signs - Follows prompted schedules - Follows familiar routes to get around - Looks for places, people, activities that are desired BUT gets lost easily - Becomes easily frustrated when things don t go well or others won t behave right Common Pain Behaviors - Diamonds Somatic Complaints Bursts of anger Refusals Appetite or sleep changes Worsening cognition Referred pain previous pain sites/old injuries Hiding denial Over medicate self unintentionally Strange explanations of pain/discomfort Refusals of pain medications Withdrawal social Depression - Anxiety Helpful Responses for Diamonds Asking where not if Ask what has helped before Consider more intensive referral Use distractions & redirection Use activity and engagement Monitor for response for meds (narcotics) Heat baths & packs Mobility enhancement Rest breaks and healthy sleep environments Music to calm Provide control options What Can & Does the Person Do? Emerald (GDS 4-5-6) - Needs some supervision for personal care sequences - Follows simple gestures & demonstration - Follows familiar others to locations - Uses environmental cues to locate places - Looks for places, people, activities that look or sound interesting or are familiar - Becomes upset if unable to figure out what should or needs to be done Common Pain Behaviors for Emeralds Repeated activities with increasing distress Repeated questions with increasing distress Repeated attempts to elope with increasing distress In the moment awareness ONLY Shutting down isolating from all Guarding, rubbing, touching, handling Striking out or swearing if you hit the spot Yell out when moving Mis-remember and report their pain 12

13 Helpful Responses for Emeralds Connect, meet need, then redirect or distract Rocking, massage, warmth Visual distraction & engagement Environmental change new place Schedule meds preactivity Careful info sharing between caregivers Use more visual guidance rather then physical assist Careful physical exam What Can & Does the Person Do? Amber (GDS 5-7) - Needs step-by-step guidance & help for personal care - Follows demonstrations and hand-under-hand guidance after a few repetitions, uses utensils (not always well) - Likes to handle, manipulate, touch, gather, place things - Will not respect others space or belongings - Goes to places or activities that are interesting visually, tactilely, auditorily - Leaves places/activities that are TOO busy or crowded Common Pain Behaviors for Ambers Pacing Repetitive gestures, hand actions, Facial grimacing, vocalizations Increased eye contact with caregivers and personal space invasion Picking and pulling at clothing/stuff/ nonlocalized Striking out during care attempts Shutting down inactive Non-processing of pain Helpful Responses for Ambers Use of comfort touch and actions Environmental modifications for calming and comfort light, sound, temperature, seating, smells Use mirroring Use music Use prayer or rhythmic speech or reading Warm blankets and comfort food/drink Balance rest & activity together & alone What Can & Does the Person Do? Ruby (GDS 6-7) - Walks/wheels around a majority of the time when awake - May carry objects or rub/clap/pat with hands - Tends toward movement unless asleep - Uses hands poorly, not spontaneously, inconsistently - Follows gross demonstration & big gestures for actions - Limited awareness of others - may invade personal space - Gets stuck in tight places - Leaves during unpleasant experiences Common Pain Behaviors for Rubies Walking or rocking Vocalizations Forceful actions pushing, grabbing, banging or hitting Full body startle Falls & gait changes Loss of appetite food/fluid refusals Sleeping or lying not sleeping Restless movements Rigidity Stiffness Guarding Vomiting or drooling Teeth grinding or growling Staring 13

14 Helpful Responses for Rubies SLOW DOWN Go with first then Model the behavior you want to see/get Warm spaces, warm covers, layers Massage feet, hands, back, head Aromatherapy One hand moves the other stays still Once in touch stay connected Music and singing Rhythmic & circular movement Deep and rhythmic voice Don t stop pain meds What Can & Does the Person Do? Pearl (GDS 7) - Is bed or chair bound - Has more time asleep or unaware - Has many primitive reflexes present -Startles easily - May cry out or mumble constantly - Increases vocalizations with distress - Difficult to calm - Knows familiar from unfamiliar - Touch and voice make a difference in behaviors Common Pain Behaviors for Pearls Writhing Grasping Grinding teeth Total body withdrawal Moaning Screaming Wide eyes - stares Calling out during movement Visible evidence of injury or wounds without a response Pressure sores Friction areas Bruising Rashes Nails in flesh Skin tears Swelling/inflammation Helpful Responses for Pearls YOU!!! And how you move, touch, look, speak, listen, & respond SLOW WAY DOWN! Guidelines for Assessment Individualize Your Pain Scale What you see, hear, feel Use of tools: early stages only (diamonds) Visual Pictures Try to see what works Then use consistently 14

15 Pain Thermometer Medications What works: Scheduling medications Providing for breakthrough pain Balance pain relief with function Using right class for the type of pain Monitoring for response: positive or negative What doesn t work: Antipsychotics Anxiolytics Treating the symptoms not the cause Over responding to pain Ignoring medications as options How can we help better? - It all starts with - your approach! 15