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1 1 For the slides from this presentation, visit: Slides will be available for 2 weeks 2 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 3 1

2 Building a Dementia-Friendly Community 4 Becoming Competent Skill Knowledge Awareness Unaware 5 Ta-Da!!!! Ah-Ha Ah! Ohhh! Oh Ah Oh Dadum, Dadum, Dadum 6 2

3 Quiz Time! - What do we know? - What do we think we know? - What don t we know? - What surprised us most? - What can we do about it? 7 Question #1 Dementia and Alzheimers are two different words for the same condition a. True b. False c. I don t know 8 Question #2 What is dementia? a. Problems with memory b. Another word for Alzheimers c. Something all older people get d. Another word for a failing brain e. I don t know 9 3

4 Question #3 How long do people live when they get dementia? a. Not long, 1-3 years b. About 3-5 years c. Anywhere from 6 months to 30 years d. About years e. I have no idea 10 Question #4 What is the first change with dementia? a. The brain begins to shrink b. The chemistry of the brain changes c. The person s personality changes d. The person s behavior changes e. I don t know 11 Question #5 What parts of your brain will change if you get dementia? a. Memory and language centers die b. Thinking and behavior centers die c. All areas have some changes at about the same time d. All areas have some changes at different times e. I really don t know 12 4

5 a. 2-3 Question #6 About how many types, forms, or causes of dementia are there? b c d. Over 100 e. I have no idea 13 Question #7 About what percentage of people over 85 have some form or degree of active symptoms of dementia? a. About 40-50% b. About 75-80% c. About 10-15% d. About 25% e. I don t know 14 Question #8 About what percentage of people under age 70 have some form or degree of active symptoms of dementia? a. 1% - it is very rare b. About 5-10% c. About 25% d. I don t know 15 5

6 Question #9 What is an effective treatment for dementia? a. How we respond to people, the settings we create, and opportunities to continue to life with support b. There are pills people can take to slow the disease down c. There is nothing that really helps d. Exercise and eating right can keep it from getting worse e. I don t know 16 Question #10 Which message would you prefer if you had dementia? a. You seem incompetent, let me help you b. Hey there, is there something I can offer to make things better? c. There is clearly something wrong with you and I don t know what to do d. You are scaring me and I want you out of here e. There is clearly something wrong with you and I am going to call the authorities for help 17 But Couldn t it Just Be Forgetfulness or Getting Old? - There is a difference - At first it may be hard to tell, but then you start to notice patterns - One of these things start to show changes: - Memory - Problem solving - Word finding - Behavior 18 6

7 How Common is Dementia? The risk goes up dramatically with increasing age America is aging! Alzheimer s may increase by 400% over the next 50 years without medical advances Percent with Alzheimers <60 at 60 >85 19 Amygdalae: Threat Dangerous! Pleasure Need! Aroused/Risky Want Alert/Aware Like 21 Primitive Brain is in Charge of: Survival: Autonomic protective: Fright, flight, fight + hide or seek Pleasure seeking: Meeting survival needs and finding joy Thriving Running the Engine: Maintain vital systems: BP, BS, Temp, Pain, Oxygen Breathe, suck, swallow, digest, void, defecate Circadian rhythm Infection control Learning New and Remembering: Information Places (spatial orientation) Passage of Time (temporal orientation) 22 7

8 Top Five Human Needs and Emotional Indicators of Distress Five Expressions of Emotional Distress Angry irritated angry furious Sad dissatisfied sad hopeless Lonely solitary lonely abandoned/trapped Scared anxious scared terrified Lacking Purpose disengaged bored useless Five Human Needs Intake Hydration, nourishment, meds Energy Flow tired or revved up directed inward or outward Output Urine, feces, sweat, saliva, tears Comfort 4 F s and 4 S s Pain-Free! Physical, emotional, spiritual 23 Progression of Dementia: The GEMS Sapphires Diamonds Emeralds Ambers Rubies Pearls 25 Why Use GEMS? - Uses familiar concepts to talk about a difficult subject - Focuses on what is valued rather than on a number or amount of decline - Like people, gems are precious and unique, with common characteristics - Allow to us to get beyond the words dementia and Alzheimers - Opens the door to talking about changes - Allow us to speak in a code to protect dignity 26 8

9 - Us on a good day Sapphires - Clear and true to ourselves - May feel blue over changes - Some are stars and some are not - Can typically choose our behavior - May have other health issues that affect behaviors - Recognize life experiences, achievements and values - Can follow written info and hold onto it 27 Diamonds -Sharp, hard, rigid, inflexible, can cut -Many facets, still often clear, can really shine -Are usually either Joiners or Loners -Can complete personal care in familiar place -Usually can follow simple prompted schedules -Misplaces things and can t find them -Resents takeover or bossiness -Notices other people s misbehavior and mistakes -Vary in lack of self-awareness -Use old routines and habits -Control important roles and territories, use refusals 28 Emeralds -Changing color -Not as clear or sharp, more vague -On the go, need to do -Flaws may be hidden -Time traveling is common -Are usually Doers or Supervisors -Do what is seen, but miss what is not seen -Must be in control, but not able to do it correctly -Do tasks over and over, or not at all 29 9

10 30 -Amber Alert- Caution! -Caught in a moment Ambers -All about sensation and sensory tolerance, easily over or under stimulated -May be private and quiet or public and noisy -No safety awareness -Ego-centric -Lots of touching, handling, tasting, mouthing, manipulating -Explorers, get into things, invade space of others -Do what they like and avoid what they do not like Rubies: -Hidden depths -Major loss of fine motor finger and mouth skills, but can do gross motor skills like walking, rolling, rocking -Comprehension and speech halted -Wake-sleep patterns very disturbed -Balance, coordination, and movement losses -Eating and drinking patterns may change -Tends toward movement unless asleep -Follows gross demonstration and big gestures for actions -Limited visual awareness -Major sensory changes 31 Pearls: -Hidden in a shell: still, quiet, easily lost -Beautiful and layered -Spends much time asleep or unaware -Unable to move, bed or chair bound, frequently fall forward or to side -May cry out or mumble often, increases vocalizations with distress -Can be difficult to calm, hard to connect -Knows familiar from unfamiliar -Primitive reflexes -The end of the journey is near, multiple systems are failing -Connections between the physical and sensory world are less strong but we are often the bridge 32 10

11 How can we help better? It all starts with your approach! 33 How You Look At Dementia Matters! - It is not all about loss - It is not untreatable - It is not unpredictable - Behaviors don t come out of nowhere - Dementia doesn t just affect the person with the disease it impacts all of us 34 Dementia cannot be cured, but it can be treated: - With knowledge - With skill building - With commitment - With flexibility - With practice - With support - With compassion 35 11

12 Believe: People with dementia are doing the best they can! 36 Realize: It Takes Two to Tango or Tangle! 37 Being right doesn t necessarily translate into a good outcome for both of you 38 12

13 Dementia-Friendly Language: Person Living with Dementia (PLwD) Care Partner Assisting with Doing with, not to Substitution, not subtraction Unmet Needs Expressive Communication Validation 40 Essentials for Communication: What Helps? What Hurts? What Matters Most? 41 To Connect: - Use the Positive Physical Approach to get started - Make a Visual Connection: - Look interested and friendly - Make a Verbal Connection: - Sound enthusiastic, keep responses short - Make a Physical Connection: - Hold Hand-under-Hand, or use flat open hand on forearm or knee 42 13

14 Positive Physical Approach 43 Positive Physical Approach - Pause at edge of public space (6 feet) - Greet with your open hand next to your face, smile - Call the person by name, if possible - Move your hand into handshake position - Approach slowly and within visual range - Move from a handshake to Hand-under- Hand position -Shift into a Supportive Stance on their side -Get low by standing or kneeling, but don t lean in 44 Hand-under-Hand 45 14

15 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 the name then wait If you will try, then you will see How different life can be. For those you re caring for! 46 Then, Connect Emotionally: - Make a connection -Offer your name: I m (name) and you are? -Offer a shared background: I m from (place) and you re from? -Offer a positive personal comment: You look great in that hat! or I love that color on you. -Make a positive observation: What beautiful flowers! or Great photo! 47 Connecting Emotionally: - Identify a common interest -Say something nice about the person or their place -Share something about yourself and encourage the person to share back - Follow their lead and listen actively -Use some of their words back to keep the flow going -Remember it s often the first time for them, so expect repeats -Use the phrase Tell me about 48 15

16 How You Communicate: How you say it What you say How you respond 49 Use empathy and go with the flow! Reality Orientation Telling Lies 50 Ways of Cueing and Helping: - Sight or Visual cues - Verbal or Auditory cues - Touch or Tactile cues 51 16

17 Visual Cues: Signs Pictures Props/objects Gestures Facial expressions Demonstrations 52 Verbal Cues: Keep it simple and short Directed Matched to visual cues Offer concrete choices Break the task down to single steps at a time Ask the person to try or for their help 53 Touch Cues: Touching a body part Handing the person an item Using Hand-under-Hand assist 54 17

18 To Communicate When They re Distressed: First Connect Emotionally Then - Use Supportive Communication Finally - Move Together to a New Location, Activity, or Conversation 55 To Connect Emotionally: - Send visual signal of connection: - Look concerned! - Send a verbal signal of connection: - Use the right tone of voice - Send a physical signal of connection: - Give a light squeeze or sandwich the hand - Offer an open palm on shoulder or back - Offer a hug if the person is seeking more contact 56 Then, Use Supportive Communication: Repeat a few of their words, with a question Listen! Offer empathy: Sounds like Seems like Looks like Go slow Avoid confrontational questions Use just a few words Validate their emotions 57 18

19 Be a Detective, Not a Judge! Try to figure out what is being communicated: Words Thoughts Actions Needs Beliefs Don t assume or presume Don t discount the message because of how it is delivered 58 For All Communication: If what you are trying is not working: - Stop! - Back off - Think it through, then: - Re-approach - Try something slightly different 59 INTENT I'm sorry I was trying to help THIS IS HARD I'm sorry, this is hard, I hate it for you EMOTION I'm sorry I made you angry I m sorry I disappointed you THAT HAPPENED I'm sorry, it should NOT have happened INTELLECTUAL CAPACITY I'm sorry, I had no right to make you feel that way 60 19

20 Quiz Time: What did you learn? 61 Dementia and Alzheimer s are two different words for the same condition: a.true b. False c. I don t know 62 What is Dementia? a. Problems with memory b. Another word for Alzheimer s c. Something all older people get d. Another word for a failing brain e. I don t know 63 20

21 How long do people live when they get dementia? a. Not long, 1-3 years b. About 3-5 years c. Anywhere from 6 months to 30 years d. About years e. I have no idea 64 What is the first change with dementia? a. The brain begins to shrink b. The chemistry of the brain changes c. The person s personality changes d. The person s behavior changes e. I don t know 65 What parts of your brain will change if you get dementia? a. Memory and language centers die b. Thinking and behavior centers die c. All areas have some changes at about the same time d. All areas have some changes at different times e. I really don t know 66 21

22 About how many types, forms, or causes of dementia are there? a. 2-3 b c d. Over 100 e. I have no idea 67 About what percentage of people over age 85 have some form or degree of active symptoms of dementia? a. About 40-50% b. About 75-80% c. About 10-15% d. About 25% e. I don t know 68 About what percentage of people under age 70 have some form or degree of active symptoms of dementia? a. 1% - it is very rare b. About 5-10% c. About 25% d. I don t know 69 22

23 What is an effective treatment for dementia? a. How we respond to people, the settings we create, and opportunities to continue to life with support b. There are pills people can take to slow the disease down c. There is nothing that really helps d. Exercise and eating right can keep it from getting worse e. I don t know 70 Which message would you prefer if you had dementia? 71 a. You seem incompetent, let me help you b. Hey there, is there something I can offer to make things better? c. There is clearly something wrong with you and I don t know what to do d. You are scaring me and I want you out of here e. There is clearly something wrong with you and I am going to call the authorities for help Bonus: What change happens for all of us as we age? a. We lose ability to learn new things b. We all eventually develop some form of dementia c. Our intake, processing, and output speed slows over time d. We all get hard of hearing e. I don t know 72 23

24 Progression of the Condition To the tune of This Old Man 73 Sapphire true, you and me, The choice is ours, and we are free To change our habits, to read, and think and do, We re flexible, we think it through! 74 Diamond bright, share with me, Right before, where I can be, I need routine and different things to do, Don t forget, I get to choose! 75 24

25 Emerald Go, I like to do, I make mistakes, but I am through! Show me only one step at a time, Break it down and I ll be fine. 76 Amber Hey! I touch and feel, I work my fingers, rarely still. I can do things, if I copy you, What I need is what I do! 77 Ruby skill it just won t go, Changing something must go slow Use your body to show me what you need, Guide, don t force me, don t use speed! 78 25

26 Now a Pearl, I m near the end, But I still feel things through my skin, Keep your handling always firm and slow, Use your voice to calm my soul. 79 The Goal? - Build a plan that helps the person: - Be the way they want to - Do what they are able - Feel good about themselves - Feel OK about where they are - Enjoy the people who are there to help them - Get what they need - Build a plan that supports care partners and each other 80 So What Do We Need from You? - Awareness of the condition - Participation in change - Sharing about the past and openness to change - Time to learn and try some new options - Willingness to listen, learn, and admit when we make mistakes - Willingness to advocate and negotiate - Flexibility as we figure this out 81 26

27 What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others. -Pericles 82 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 83 To learn more about the information covered in this educational presentation, join our list. Text TEEPA to Resources are provided free of charge. Message and data rates may apply to text