Friends! How Life Long Personality Traits & Preferences Impact Dementia

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1 How Life Long Personality Traits & Preferences Impact Dementia Seeing It from Many Perspectives Friends! - Friends, I will remember YOU - Think of you and pray for you. - And when another day is through - I ll still be friends with you! I m Still Me But I m Different!!! - Help Me Be Who and How I Am, - Don t Ask to Do or Be What I Can t - Let Go, But Don t Give Up What Makes You CLICK? What Makes You TICK? - Learning About How YOU Are and Like Things - So YOU Can Help Yourself & the Person You are Caring For Life Long Personality Traits & Preferences Make a Difference - We are more of who we have always been UNLESS - We have always been covering up who we really are we decide to let go OR - Dementia robs us of our ability to be the way we want to be OR - Dementia causes us forget how we are supposed to be and lets us be free Personal Preferences Matter - We like what we like! - With DEMENTIA the likes can change - Old preferences will need to be revisited - The Challenge is to HONOR what is important BUT change what is needed - Our willingness to meet the person s changing NEEDS is essential - Changes are made harder by our sense of LOSS and GRIEF 1

2 Some Personal Preferences - Appearance - Behaviors - Language - Daily routines - Foods & Drinks - Music - Touch & Textures & Noise & Space - Worship Spiritual practices How Does Dementia Affect This? - Memory - Language understanding & production - Self-care skills - Sensation - Emotional control - Reasoning & thinking - Vision How Might This Work with YOU? Personality traits Personality Traits Who are you? - Introvert-Extrovert - Lots of Details Big Picture only - Logical Emotional - Planning ahead Being in the moment First How You - Come to decisions - Get re-energized - Feel about boundaries and space Who is the person you are trying to help? 2

3 Introvert - Extrovert Second How do you Introvert Likes to be alone Likes to think it out Likes personal space Needs alone time Private Shares little Decides on own after thinking it through Extrovert Thinks out loud Talks it out Seeks out people Shares a lot Not good with boundaries Gets opinions before deciding - Like to get information - Like to do things - Decide whether to do something - Approach an unfamiliar task Details Big Picture Third What makes sense? Details Needs to know HOW Specifics of what to do Wants detailed info to do it RIGHT Likes doing the familiar and routine Likes a check list follows it Likes to DO it Big Picture Needs to know WHY Likes to fly by the seat Likes to hear the big plan Likes to try out new and different ways of doing things Likes to experiment Likes to TALK it out first - How do you judge things? - How do you decide if things are OK - What matters most to you? - What DRIVES your behavior and actions? Logical - Emotional Fourth How You Logical Head First Fair Reasonable Rational Likes to discuss differences of opinion How other people behave Emotional Heart First Nice Kind Empathetic Prefers to avoid disagreements How other people feel - Use time - Feel about TIME the future versus now - Plan ahead versus like surprises - Feel about KNOWING what is expected - Feel about deadlines - Feel about making decisions 3

4 Planning Ahead In the Moment Planning Ahead Aware of the future Sets priorities - plans Likes routines Likes a schedule Likes to do things as planned Decide & move on! Needs to be in CONTROL In the Moment Being flexible Go with NOW issues Not forward thinking Running late Putting other things off Consider options. GO WITH THE FLOW Some stuff we think/feel people do on purpose is really just WHO they are Which is BETTER? - There is no BETTER - Just Different - Just Ranges What About Clients? - Life long patterns - Introvert versus Extrovert - Detail versus Big Picture - Thinker versus Feeler - Plan versus Go with the Flow or Introvert needing space or Details just the FACTS the familiar 4

5 or Fairness Rules Thinkers others behavior aware or Now Oriented Go with the Flow What if You Don t Get What You Need at Work? - You still need it! - You will feel drained and empty if you don t get your needs met! - It s not about what is better its about recognizing what you prefer and what you need! What About the Person with Dementia? - They are at HOME - They have needs how will we help? - How can we change the environment to help? - Who needs to know this? Positron Emission Tomography (PET) Alzheimer s Disease Progression vs. Normal Brains Normal Early Alzheimer s Late Alzheimer s Child Brain Changes with Dementia - From Alzheimer s: A Broken Brain Tuscaloosa, AL: Dementia Education and Training Program, G. Small, UCLA School of Medicine. Brain, 1999 University of Alabama 5

6 Learning & Memory Center Hippocampus BIG CHANGE Normal Brain Alzheimers Brain Brain, 1999 University of Alabama The Broken Brain: Alzheimers, 1999 University of Alabama The Broken Brain: Alzheimers, 1999 University of Alabama The Broken Brain: Alzheimers, 1999 University of Alabama Understanding Language BIG CHANGE Hearing Sound Not Changed Sensory Strip Motor Strip White Matter Connections BIG CHANGES Automatic Speech Rhythm Music Expletives PRESERVED Formal Speech & Language Center HUGE CHANGES The Broken Brain: Alzheimers, 1999 University of Alabama Executive Control Center Emotions Behavior Judgment Reasoning The Broken Brain: Alzheimers, 1999 University of Alabama 6

7 The Broken Brain: Alzheimers, 1999 University of Alabama How Can We Become Better Care Partners? - Be willing to try something new - Be willing to learn something different - Be willing to see it through another s eyes - Be willing to fail & try again Vision Center BIG CHANGES How Do We Measure Progression? - Screening Assessment - Observed Behavior & Demonstrated Skills - Three Scales Used Alzheimers (Early, Middle, Late) - GDS 7 point scale (1-7) - Cognitive Disability Theory ACL (6-1) Gem Levels = Allen Levels - Not numbers - Each is precious & unique - Each requires a special setting - Each requires the just right care - Visual, verbal, touch cues - Each can shine - Dynamic & Fluid in the moment behavior - Accounts for chemistry as well as structure - Takes 2 concepts & connects - familiar & new, better use & application Caregiving Gems - Teepa Snow, MS, OTR/L, FAOTA Now for the GEMS Sapphires - Diamonds - Emeralds - Ambers - Rubies - Pearls 7

8 Now for the 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 Sapphires Clear & True to Themselves May feel blue over changes Importance of time true to lifetime Will like to shine at times Can make their own setting right Will set their own pace Will still need us in their lives They can CHOOSE Diamonds - Still Clear - Sharp - Can Cut - Hard - Rigid - Inflexible - Many Facets - Can Really Shine Emeralds - Changing color - Not as Clear or Sharp - Vague - Good to Go Need to DO - Flaws are Hidden - Time Traveling Ambers - Amber Alert - Caution! - Caught in a moment - All about Sensation - Explorers Rubies - Hidden Depths - Red Light on Fine Motor - Comprehension & Speech Halt - Coordination Falters - Wake-Sleep Patterns are Gone - 8

9 Pearls - Hidden in a Shell - Still & Quiet - Easily Lost - Beautiful - Layered - Unable to Move Hard to Connect - Primitive Reflexes on the Outside Believe - - People with dementia - Are doing - The BEST they can! Sensory Processing and Dementia - With Dementia or Brain Changes - It Matters Humans have FIVE ways of getting information from the world around them - What we: - See - Hear - Feel - Smell - Taste Two Major Categories - - 9

10 Two Categories FAST Reflexive Try to keep you safe Autonomic reflexive BIG! Strong Emotions!!! Spinal & Primitive Flight-Fight-Flight Slower Brain driven Exploring and figuring out Details & differences Focused Ignore big world to experience immediate Want more or want less With Dementia Less able to pick up on danger signals/cues More likely to over-react to normal range To non-demented seems unpredictable BUT it s the new predictable set point May move toward dangerous versus away from it Either hyper-focused OR un-observant From multi-modal awareness to single characteristic attention Shortened task attention span Variable sensory attention Atypical focus on a characteristic edges of the frame versus the picture With Dementia All Senses are Affected: - Miss information - Mis-understand information - Over-react to information - Under-react to information - Get stuck on a sensation - Can t stand a sensation - Variable abilities - Can t adjust or adapt to sensation With Dementia It s All About Finding the BALANCE!!!! Balance Like Good for you Want Tolerate Pleasant - Unpleasant Comforting - Annoying Stimulating - Frightening Calming - Boring Nothing - Too much Familiar - Novel New Sensation - A common stimulus - That causes an Individual experience 10

11 The Stimulus - Single mode versus multi-modal - Constant versus intermittent - Subtle versus EXTREME - Still versus moving - Gradual versus sudden - Sought out versus given - Controlled by me versus by you - Expected versus unexpected Vision Changes Peripheral awareness Visual field Depth perception Light-dark accommodation Tracking Blink Organized scanning Saccadic eye movements Color discrimination Figure ground perception Near-far accommodation Near acuity Night vision Object recognition Facial recognition Hearing-Comprehension Changes Touch & Movement Changes Direction Emergency signals Alerting communication Localization Comprehension Sound recognition Voice recognition Foreground-background Tracking Following a conversation Interpreting meaning Multi-step information - This one is both complicated and IMPORTANT!!!! - Sensation, Processing, Reactions OR Responses Happen FAST!!! Almost automatic due to habits and procedural memories looping once started - Active versus passive - different Touch Movement Balance Coordination Speed Accuracy Strength Bi-lateral & uni-lateral Gross motor Fine motor Reflexes Sensations Pressure Temperature Moving touch Texture Shapes Touch Extreme Temperature Sharp Cutting High velocity impact Sustained pressure Friction Variation in temperature Variable textures Massage Wet/dry Manipulation Grasp 11

12 Movement Balance against gravity Block incoming Avoid contact Catch balance Maintain upright Voluntary movements to meet goals Tool use Object manipulation Construction Olfactory Smell Changes Limited Smoke Chemicals or gas Spoiled food Body odor Urine or feces Emotional memories Emotional reaction Pleasant-unpleasant Smell identification Stimulate hunger or thirst Stimulate nausea Localization & tracking Gustatory Taste Changes - Less able to pick up on sweet and salty SO they want MORE - Still keep bitter and sour SO they may not like things they used to SPECIAL EVENTS Things may taste wrong May order something then refuse to eat Create a Sensory Preference List for YOU - Visual likes stimulating & calming - Auditory likes stimulating & calming - Touch likes stimulating & calming - Movement likes stimulating & calming - Smell likes stimulating & calming - Taste likes stimulating & calming Create a Sensory INTOLERANCE List FOR YOU - Visual Irritants - Auditory Irritants - Touch Irritants - Movement Irritants - Smell Irritants - Taste Irritants Gem Changes - Sapphires you and me as is - Diamonds more vocal and rigid - Emerald - visual and auditory MOST - Amber ALL SENSES critical - Ruby Touch, movement, personal & intimate space awareness - Pearl Touch, Movement intimate space KEY! 12