Dementia Care: Does It Matter? What Do You Think? REALIZE. It s the relationship that is MOST critical

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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 Dementia Care: Does It Matter? What Do You Think? REALIZE - It Takes TWO to Tango or tangle Being right doesn t necessarily translate into a good outcome for both of you It s the relationship that is MOST critical NOT the outcome of one encounter 1

2 As part of the disease people with dementia tend to develop typical patterns of speech, behavior, and routines. These people will also have skills and abilities that are lost while others are retained or preserved. Dementia: What is it, really? AND How can we help? Other words used for dementia - Senility - Hardening of the arteries - Daft, crazy, etc. - Off - Just not right in the head - Losing it - Getting old What are the right words? - FIRST, we have to find out what is really happening - THEN we can give it a name - BUT really, it is a condition that is eventually going to change EVERYTHING -It is the start of a hard and different journey Normal versus Not Normal Aging: What could it be? NORMAL Aging Slower to think Slower to do Hesitates more More likely to look before you leap Know the person but not the name Pause to find words Reminded of the past For you, its worse NOT Normal Aging Can t think the same Can t do like before Can t get started Can t seem to move on Doesn t think it out at all Can t place the person Words won t come even later Confused about past versus now For you, it s DIFFERENT - Another medical condition - Medication side effect - Hearing loss or vision loss - Depression - Acute illness - Severe but unrecognized pain - Other things 2

3 Could It Just Be Forgetfulness or Getting Old? - There is a difference! - At first it may be hard to tell, then you start to notice patterns - One of these things start to show: -Memory - Problem solving issues -Word finding - Behavior Cognitive Changes with Aging: - Normal changes: More forgetful, slower to learn - MCI (Mild Cognitive Impairment): Trouble with immediate recall, word finding, or complex problem solving problems (½ of these folks will develop dementia in 5 yrs) - Dementia: Chronic thinking problems in > 2 areas - Delirium: Rapid changes in thinking and alertness (seek medical help immediately) - Depression: Chronic unless treated, no pleasure out of life, I don t know and I just can t responses, can look like agitation and confusion Dementia does not equal Alzheimers does not equal Memory Problems Alzheimer s Disease Young Onset Late Life Onset DEMENTIA Lewy Vascular Body Dementias Dementia (Multi-infarct) 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 Four Truths About Dementia: - At least 2 parts of the brain are dying (one part related to memory and one other part) - It is chronic can t be fixed - It is progressive it gets worse - It is terminal it will kill, eventually Alzheimer s: - New info lost - Recent memory worse - Problems finding words - Mis-speaks - More impulsive or indecisive - Gets lost - Notice changes over 6 months 1 year 3

4 Vascular Dementia: - Sudden changes - Picture varies by person - Can have good days, bad days - Judgment and behavior not the same - Spotty losses - Emotional and energy shifts Lewy Body Dementia: - Movement problems, falls - Visual hallucinations - Fine motor problems: hands, swallowing - Episodes of rigidity and syncopy - Nightmares - Fluctuations in abilities - Drug responses can be extreme and strange Fronto-Temporal Dementias: - Many types - Frontal: impulse and behavior control loss -Says unexpected, rude, mean, odd things to others -Dis-inhibited with food, drink, sex, emotions, actions - Temporal: language loss -Can t speak or get words out -Can t understand what is said, sound fluent nonsense words The person s brain is dying PET and Aging PET Scan of 20-Year-Old Brain PET Scan of 80-Year-Old Brain ADEAR,

5 Positron Emission Tomography (PET) Alzheimer s Disease Progression vs. Normal Brains Normal Early Alzheimer s Late Alzheimer s Child Memory G. Small, UCLA School of Medicine. Memory Loss Losses Immediate recall Attention to selected info Recent events Relationships Preserved abilities Long ago memories Confabulation! Emotional memories Motor memories Understanding Understanding Losses Can t interpret information Can t make sense of words Gets off target Preserved abilities Can get facial expression Hears tone of voice Can get some non-verbals Talking 5

6 Language Losses Can t find the right words Word salad Vague language Single phrases Sounds and vocalizing Can t make needs known Preserved abilities Singing Automatic speech Swearing/sex words/forbidden words Impulse Control Impulse and Emotional Control So what is wrong with them? Losses Becomes labile and extreme Think it - say it Want it - do it See it - use it Preserved Desire to be respected Desire to be in control Regret after action Memory Damage: Can t learn new things Forgets immediate past Does time and space travel Uses old memories like new May not ID self or others correctly CONFABULATES Follows visual cues Seeks out the familiar Can get stuck on an old emotional memory track Language Damage: Has very concrete understanding of words Misses 1 our of 4 words (may miss Don t ) Word finding problems Word salad problems COVERS Follows your cues Gets very vague, repeats Uses automatic responses Mis-speaks So what is wrong with them? Impulse Control Problems: Say whatever they are thinking Swear easily Use sex words or racial slurs when stressed Act impulsively Don t think thru consequences Can t hold back on thoughts or actions Responds quickly and strongly to perceived threats (flight, fight, fright) Performance Problems: Thinks they can do better than they can Can sometimes do better under pressure, but sometimes worse Uses old habits Attempts can be dangerous or fatal They will tell you one thing and then do another Families may over or under limit activities REALLY Ask Yourself Is this behavior truly a Problem Behavior OR is this a SO WHAT Behavior? 6

7 Is it a Problem Behavior? - Risk to that person (physical, emotional, physiological risk)? - Risk to the caregiver? - Risk to others? - Is the risk REAL and IMMEDIATE? - If not, it is a SO WHAT behavior If it is a SO WHAT Behavior - Leave it ALONE! - Figure out how to let go of it - Let it go! If it is a Problem Behavior Describe the behavior OBJECTIVELY: -WHO? -WHAT? -WHERE? -WHEN? -What helps and what makes it worse? -Frequency and Intensity? Six Pieces to the Puzzle: - Personal history and preferences - Level of dementia - Other conditions and sensory losses - Environmental conditions - Care partner approach and behaviors - What happened: full day and all players Key Skills: - Greet before you treat - Build a team - Give cues in a specific sequence - Respect space and the person - Wait for a response before going on - Do one thing at a time - STOP and back off if it isn t working - Try something different as you approach GEMS - Based on Allen Cognitive Levels -Cognitive Disability Theory OT based - Creates a common language and approach to providing: - Environmental support - Caregiver support and cueing strategies - Expectations regarding retained abilities and lost skills -Promotes graded task modification for success 7

8 How Do the GEMS Help? - Use familiar concepts to talk about a difficult subject - Focus on what is valued - Allow to us to get beyond the words dementia and Alzheimer s disease - Open the door to talking about changes. - Allow us to speak in a code to protect dignity Now for the GEMS Sapphires True Blue Slower But Fine Diamonds Rituals and Routines, Cutting Emeralds Going Time Travel Where? Ambers In the Moment - Sensations Rubies Stop and Go No Fine Control Pearls Hidden in a Shell - Immobile Diamond: - Uses routines and old habits to function - Can complete personal care in familiar place - Follows simple prompted schedules - mostly - Misplaces things and can t find them - Resents takeover or bossiness - Notices other people s misbehavior and mistakes - Territorial, often uses refusals! - Varies in lack of self-awareness Personal Care Issues: IADLs Unfamiliar Settings or Situations: Money management Hospital stay Transportation/driving Housing change Cooking Change in family Home maintenance and safety Change in support system Caring for someone else MD visits Pet maintenance New diagnoses Medication administration Traveling or vacations How to Help Diamonds: - Apologize! I m SORRY! or I didn t mean to - Be friendly, not bossy - Make it temporary with Let s try - Share responsibility, don t take over - Use as many old habits as possible - Give up being right - Go with the flow - Give another job when taking one away Use empathy and go with the flow! Reality Orientation Telling Lies 8

9 How you talk: - How you say something - What you say - How you respond Emerald: - Limited awareness of time-sensitive needs - Needs some help, but not doing for or to them - Wants the familiar, may be hard for them to find it - Asks a lot about What? Where? - Increasing mistakes and errors - Likes to stay busy with familiar tasks - Fears being seen as incompetent Personal Care Issues: - Doesn t do care routinely, but may think they did - Makes mistakes in sequence, unaware - Repeats some care routines over and over - Resists or refuses help - Gets lost and can t find where to do care - Limited awareness of real needs like hunger, thirst, voiding, bathing, grooming - Has other stuff to do besides personal care How to Help Emeralds: - Learn about SO WHAT is it worth it? - Provide subtle supervision for care - Provide visual prompts to do such as gestures, objects, set-up, samples, show - Hide visual cues to stop/prevent actions (put away, move out of range, leave) - Use the environment to cue/show - Use humor, friendliness, support What NOT to Do: Positive Physical Approach: - DO NOT point out their errors or focus on who s wrong or right - DO NOT offer, physical assist first - DO NOT offer Let me HELP you - DO NOT try to go back and fix it - DO NOT continue arguing about reality - DO NOT treat them like children 9

10 A Positive Approach (To the Tune of Amazing Grace ) Come from the front, Go slow, Get to the side, Get low, Offer your hand, Call out their name, then WAIT If you will try, then you will see How different life can be For those you re caring for! Amber: - LOTS of touching, handling, mouthing, manipulating - Focus on fingers and mouth - May get into things - It s all about sensations - May invade space of others - Do what they like and AVOID what they do NOT like! How to Help Ambers: Hand-Under-Hand Assistance: - Provide step-by-step guidance and help - Give demonstration, show them - Hand-under-hand guidance after a few repetitions, may be able to use utensils but not always well - Offer something to handle, manipulate, touch, gather - Limit talking, noise, touch, other activities - SUBSTITUTE, don t SUBTRACT Ruby: - Big movements: walking, rolling, rocking - Can do hand actions, but not fingers - Tends toward movement unless asleep - Follows gross demonstration and big gestures for actions - Limited visual awareness - Major sensory changes - Major movement skill losses - Fine motor skill lost in mouth and hands How to Help Rubies: - Hand-under-Hand - Move with first, then guide - Learn about patterns of needs - Gradual transitions - go to stop - Use music and rhythms to help get or stop movement - Use touch with care - Combine cuing and SLOW movements 10

11 Pearl: - Immobile, can t get started - 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 How to Help Pearls: - Hand-under-Hand help and care - Check for reflexes, then modify help and approach to match needs - Guide movements - Use calm, rhythmic movements and voice - Come in from back of extremities to clean - Stabilize with one hand and work with other - Move slowly Levels Typical behaviors Cues that help Levels and Help: Diamond Emerald Amber Ruby Pearl Uses old Works on Manipulates Walks a lot Reflexes get habits uses tasks things Repeats stronger routines See = do Investigates Big body Controlled Seems rigid Not see = places and movements movement Easily not do things Little use of stops frustrated Looks for Repeats fingers More internal with others things to do familiar Can t sit still Sometimes Does the Asks actions or can t get aware familiar questions Trouble with going Errors & tools skips in doing Words, short Set up Demo Gross demo Touch instructions Simple words Gestures Hand under Smooth slow & directions Pictures Single step hand assist voice and Signs, Objects verbal cues Take hands pictures, Watch you do Hand-underhand assist breaks sounds, movement Familiar notes Hand under Watching hand guide - Let go & smells, others do it selected parts return contact H-U-H help How can we help better? It all starts with your approach! How you help: - Sight or Visual cues - Verbal or Auditory cues - Touch or Tactile cues Believe: People with dementia are doing the BEST they can! 11

12 What shouldn t we do??? - Argue - Tell WHOPPERS that relate to emotions - Ignore problem behaviors - Try a possible solution only once - Give up - Let them do whatever they want to - Force them to do something So what should we do??? Remember who has the healthy brain! Teepa s 10 Minute Stress Tamers: Take Time for YOU! - Sit quietly in calm surroundings with soft lights and pleasant scents. - Aromatherapy: lavender, citrus, vanilla, cinnamon, peppermint, fresh cut grass. - Breathe deeply: rest your mind and oxygenate - Soak: in a warm bath, or just your hands or feet - Read: spiritual readings, poetry, inspirational readings, or one chapter of a book you like - Laugh and smile: watch classic comedians, Candid Camera, America s Funniest Home Videos, look at kid or animal photos - Stretch: front to back, side to side, and across - Garden: work with plants Teepa s 10 Minute Stress Tamers: - Beanbag heat therapy: fill a sock with dry beans and sew or tie closed, heat in a microwave for 30 seconds at a time, place on tight muscles and massage gently; relax for ten minutes - Remember the good times: record oral memories, scrapbooks, photo journals, keepsake memory picture frames, or just jot - Do a little on a favorite hobby - Have a cup of decaffeinated tea or coffee - Play a brain game: crosswords, jigsaws, jeopardy, jumbles - Look through a hymnal and find a favorite and hum it all the way through Teepa s 10 Minute Stress Tamers: - Books on Tape: rest your eyes and read - Soothing sounds: music you love, music especially for stress relief, recorded sounds of nature - Listen to coached relaxation recordings - Pamper yourself : think of what you LOVE and give yourself permission to do it for 10 minutes - Neck rubs or back rubs: use the just right pressure - Hand Massages: with lotion or without - Take a walk - Sit in the sun 12

13 Teepa s 10 Minute Stress Tamers: - Rock on the porch - Pray or read a passage from scripture - Journal: take the opportunity to tell it like it is - Cuddle and stroke a pet - Have that cup of coffee or tea with a special friend who listens well - Pay attention to your personality: -If you rejuvenate being alone, then seek solitude -If you rejuvenate by being with others, seek company I Will Change! (to the tune of This Little Light of Mine ) By Teepa Snow I am gonna meet and greet Before I start to treat. I am gonna meet and greet Before I check your feet. I am gonna meet and greet Before I help you eat. How I START sets us up to succeed! No more just gettin it done I m gonna do with you. No more just gettin it done I m gonna help you through. No more just gettin it done We re gonna work, we two, Cause if I do it ALL, we BOTH LOSE! I m gonna laugh and dance with you Not just watch and frown I m gonna laugh and dance with you Not just stand around I m gonna laugh and dance with you We ll really go to town For the POWER of JOY I have found! DISCLAIMER The content contained in this presentation is strictly for informational purposes. Therefore, if you wish to apply concepts or ideas contained from this presentation you are taking full responsibility for your actions. Neither the creators, nor the copyright holder shall in any event be held liable to any party for any direct, indirect, implied, punitive, special, incidental or other consequential damages arising directly or indirectly from any use of this material, which is provided as is, and without warranties. Any links are for information purposes only and are not warranted for content, accuracy or any other implied or explicit purpose. This presentation is copyrighted by Positive Approach to Care and is protected under the US Copyright Act of 1976 and all other applicable international, federal, state and local laws, with ALL rights reserved. No part of this may be copied, or changed in any format, sold, or used in any way other than what is outlined within this under any circumstances without express permission from Positive Approach to Care. Copyright 2017, All Rights Reserved Teepa Snow and Positive Approach to Care 13