Typical Progression of Dementia: How You Can Help

Transcription

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 Typical Progression of Dementia: How You Can Help Progression of the Condition To the Tune of This Old Man - 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! 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! 1

2 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! 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! 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! 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. 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 2

3 Four Truths About Dementia - At least 2 parts of the brain are dying - It is chronic can t be fixed - It is progressive it gets worse - It is terminal it will kill, eventually Positron Emission Tomography (PET) Dementia Progression vs. Normal Brains Normal Early Dementia Late Dementia Child G. Small, UCLA School of Medicine. Beliefs - People with Dementia are doing the BEST they can - Learn to DANCE with our partner - Be the KEY - make life worth living - What we choose to do MATTERS - Be willing to CHANGE ourselves - Be willing to STOP & BACK OFF and try again Normal Brain Alzheimers Brain Traditional View of What s Wrong Not wanting F PoA or HC PoA Not willing to go to the doctor Losing important things Getting lost Irrational & Illogical Unsafe task performance Repeated calls and contacts Refusing help, resisting care Being rude Bad mouthing you to others Making up stories - confabulation Use of drugs or alcohol to cope Making 911 calls Mixing day and night No solid sleep time-sleeping all the time Not following care/rx plans No initiation - apathy Emotional meltdowns Perseveration Swearing, sex talk, racial slur, ugly words Not doing personal care Paranoid/delusional thinking Threatening caregivers Seeking people and places from the past Shadowing Eloping or wandering Seeing things and people Getting into things Undressing in public Pxs w/intimacy and sexuality Feeling sick c/o of pain Striking out at others Falls and injuries Contractures and immobility Infections and pneumonias Pxs w/ eating or drinking Caring for Someone with Dementia What Works BEST? 3

4 The Basics for Success: - Be a Detective, NOT a Judge - Look, Listen, Offer, Think - Use Your Approach as a Screening Tool - Always use this sequence for CUES - Visual - Show - Verbal - Tell - Physical Touch - Match your help to remaining abilities 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 Why I Use What I Use: - There are three systems all use numbers - Each has value, but together they are confusing - People are not numbers - Until we begin to the see the beauty and value in what the person is at this point in time, we will never care for them as we should - Gems are precious and unique, provide common language and characteristics 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 - Setting expectations regarding retained abilities and lost skills -Promotes graded task modification for success 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 4

5 Sapphires Us on a good day Clear and true to ourselves May feel blue over changes Some are stars and some are not Can make choices Can follow written information and hold on to it Recognize life experiences, achievements, and values Can connect ABCs, make contracts May have other health issues that affect behavior Diamonds Still clear Sharp, can cut Hard, rigid, inflexible Many facets, can really shine Know who s in charge and respects authority Can do old habits and routines Becomes more territorial or less aware of boundaries Like the familiar FIGHTS CHANGE Can pull it together to make you look bad Know how to push your buttons Want to keep roles the same Tell the same stories, ask the same questions What Helps? - Apologize: I m sorry! or I didn t mean to - Friendly, not bossy leader to leader - Make it temporary with Let s just try - Share responsibility, not take over - Use as many old habits as possible - Give up being right - Go with the flow - Give another job when taking one away Emeralds Changing color Not as clear or sharp, can be vague Need to do things Flaws may be hidden Time traveling Think they are FINE Get emotional quickly Make mistakes but don t realize it Do over and over OR skip completely Ask repeatedly What? Where? When? Like choices Get lost in past life, past places, past roles Need help, but don t know it or like it! How to Help: - Think SO WHAT? is it worth it? - Provide subtle supervision for care - Provide visual prompts - Gestures, objects, set-up, samples, show - Hide visual cues to stop /prevent behavior - Put away, move out of range, leave - Use the environment to cue - Use humor, friendliness, support Bad Helper Habits to Break! - Noticing and pointing out errors - Telling instead of asking: You need to - Too little or too much talking, showing, touching - Trying to take over - Putting hands on, fussing - Reality orientation or lying - Trying to use distraction 5

6 Ambers - Amber alert - caution required! - Caught in a moment - All about sensation - Explorers, get into stuff - Fiddle, mess, touch, taste, dig, fold, tear - Move toward action and noise or away from it - Sensory tolerance/need - Use mouth, fingers, feet, genitalia - Can t figure it out so they react physically How to Help: - Provide step-by-step guidance and help - Give demonstration, show - Hand-under-hand guidance, may be able to do on their own after a few repetitions, - Offer something to handle, manipulate, touch, gather - Limit talking, noise, touch, other activities - SUBSTITUTE don t SUBTRACT BAD Helper Habits to Break! - Talking too much, showing too little - Keep on pushing - Doing for, not with - Stripping the environment - Leaving too much in the environment - Getting in intimate space - Over or under stimulating - Getting loud and forceful Rubies Hidden depths Red light on fine motor Comprehension and speech halt Coordination falters Wake-sleep patterns are gone Hard to stop and hard to get going Limited visual awareness Can only move in one direction- forward only Can t figure out details, but do copy us Slow to change On the go or full stop Like music and rhythm How to Help: - Slow yourself down - Hand-under-hand - Move with first, then guide - Learn about patterns of needs - Use music and rhythms to help get or stop movement - Use touch with care - Use cuing BAD Helper Habits to Break! - Touching too quickly, startling - Leaning in, intimate space invasion - Talking too loudly - Baby-talking - Not talking at all - Not showing by demonstrating - Trying to understand what is said by being confrontational 6

7 Pearls Hidden in a shell Still and quiet Easily lost, hard to connect Beautiful, layered Unable to move Primitive reflexes Not aware of the world around most of the time Problems swallowing How we touch and help matters How to Help: - Hand-under-hand help and care, or hand on forearm if hand movement is poor - Check for reflexes, modify help and approach to match needs - GO SLOW - Use calm, rhythmic movements and voice - Come in from back of extremities to clean - Stabilize with one hand and work with other - Gather all supplies for the task before starting - Increase warmth of the room before bathing - Use warm towels and lightweight blankets - Use circular, rotational movements to relax joints for care - Provide skin care for their dry and fragile skin Bad Help Habits to Break - Hurrying to get it done quickly - Talking over or about the individual, instead of talking to them - Not checking for primitive reflexes prior to helping - Not using both hands to give care - Cleaning from the front, using prying motions - Focusing on tasks, not the relationship - Forgetting to look for the Pearl It s Not The Dementia It s What You Choose to Do About It! Some Basic Skills: - Positive Physical Approach - Supportive Communication - Consistent & Skill Sensitive Cues -Visual, verbal, physical - Hand-under-Hand - For connection - For assistance - Open and Willing Heart, Head and Hands How you help: -Sight or Visual cues -Verbal or Auditory cues -Touch or Tactile cues 7

8 Use empathy and go with the flow! Reality Orientation Telling Lies First Connect, Then Do - 1 st: Visually - 2 nd: Verbally - 3 rd: Physically - 4 th: Emotionally - 5 th: Individually 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! 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! 8

9 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! Progression: Look for what remains, not just what is lost, and see GEMS : Sapphires Diamonds Emeralds Ambers Rubies Pearls How Does the Environment Affect Someone with Dementia? Learn to Explore Using ALL Your Senses! Look, Listen and Feel: What s Happening Here? Put Yourself in the Other Person s Shoes and Be That Person! To Be That Person - What do you know about their past? - What type of Dementia do they have? - What else do they have? - What GEMS level are they at? - What is not the same as usual? Be specific! EXPLORE their WORLD For example: Is This An Unmet Need? 9

10 Unmet Needs: Look, Listen, Feel Physical Needs: Hungry or Thirsty Tired or Energized Elimination Needs Too Hot or Too Cold In Pain Emotional Needs: Angry Sad Lonely Scared Bored Looking at the Role the Environment Has on Abilities and Behavior Use: - Sight or Visual cues - Verbal or Auditory cues - Touch or Tactile cues Supportive Environments: - Include 2 factors: - What you like - What s good for you - Supportive Environments: The 3 Positive P s Physical Environment People: the ways they act and respond Programming Finding Balance: Support or impair Too much or too little The Supportive Sensory Environment: - What You Hear - What You See - What You Smell/Taste - What You Feel 10

11 What You Hear: What You See: Supports: - Quiet - Purposeful music - Familiar cues - Positive human sounds Impairs: -Constant background noise -Intrusive sounds -Care noise -Negative human noise What You See: Supports: Bright light Non-glare light Light directed at work area Light directed up/diffused Impairs: Dim light Inconsistent light Glaring light Light in eyes What You See: - Visual Cues - Too Much - Too Little Visual Cues: Where to be What to do Orienting to place Orienting to task Too Much: Dangerous items Clutter Too busy Where s the focus? 11

12 Too Little: Sterile or cold Hidden cues Lack of contrast What You Smell/Taste Affects: Appetite Social interactions Quality of life What You Smell/Taste: What You Feel: Support: Food Calming scents Stimulating scents Impair: Waste odors Medicinal odors Cleaning odors Perfumes - Temperature - Surfaces - Spaces Temperature: -Very individual -Often get colder as you get older -Impacted by disease Surfaces: Support: Safe and stable Right height Flexible Activity based Impair: Very mobile Dangerous to touch Functional -Impacted by activity level 12

13 Spaces Familiar Friendly Functional Forgiving Can You See Why Supportive Environment Matters? Environments Can Be Used to Support and Engage in Life Use Them Wisely! Learning to Take Care of Yourself, So You Can Take Care! Why do you need to manage stress? - Dementia caregiving is very HARD WORK! - Long term exposure to stress affects your physical and mental health - Over 40% of the time we will lose a caregiver before we lose the person with dementia - Your emotional state affects the person you are caring for - You are as important as the person with dementia! Step #1: Become Aware of Yourself How are you doing right now? On a scale of how stressed are you? If you aren t sure, stop and think about it If you say low, are you telling the truth or just what comes out automatically? If you say high, what are you doing about it? How do you know how stressed you are? What do other people say about you? 13

14 Let s Verify: - Physiologically - Physically - Intellectually - Emotionally - Socially - Spiritually Physiological Stress Indicators: - Heart Rate - Respiratory Rate - Blood Pressure - Blood Sugars - Bad Cholesterol Levels - Pain Physical Stress Indicators: - Constant fatigue or sleeplessness - Tight muscles or overall tenseness - Joint pain - Clenched jaw - Shaking, jerking, hyperactive reflexes - Startle easily - Eye discomfort or strain Intellectual Stress Indicators: - Can t concentrate - Can t think of more than one thing at a time - Getting stuck and thinking over and over - Can t remember things - Can t let things go - Sticky notes are everywhere - Having more accidents than usual Emotional Stress Level: Where Are You Now? Social Stress Indicators: - Not getting out - Not talking or interacting when you are out - Getting angry at others - Getting sad - Wanting to go home as soon as you get out - Ignoring people you usually love to be with - Limiting contacts - Ignoring attempts to connect 14

15 Spiritual Stress: - Angry with God - Bargaining with God - Denying that there is a God, despite a lifetime belief - Not being at peace or satisfied at any time - Not caring one way or the other - Not seeing any blessings - Not feeling connected to anyone or anything Step #2: Think and Remember - When have you been really miserable? -What were you doing? -Where were you? -Was anyone with you? -What made it awful? -How did you get over it? -What made it better? Step #3: Think and Remember - When was the last time you felt really good? -What were you doing? -Where were you? -Were you with someone? Who? -What made it great? -How did you feel? - What helps you reduce your stress? - Are you doing these things regularly? How You Feel is Real and Important! - However you feel is okay, it s how you feel! - It s not about judgment, it s about support! - Acknowledge the feelings, then decide what to do about it - Is it what you want to feel? - IF YES, go with it - If NO, work to change it! If You are Having a Hard Time: Think about -What helps you -What you need -What is missing -What you are struggling with -Who else might help -What will happen if you don t do something -What might happen if you do Some Ideas for Changing: - Pick one thing - Plan on baby steps - Get support for you - Build a routine - Check in on your feelings - Add something before giving something up - Believe that not everyone is meant to do hands-on care - Just give it a try, doesn t have to be permanent 15

16 A Few More Ideas: - Set aside a few minutes using a timer - Breathe - Smile, laugh, look for some funnies - Remember a good time - Think about what you get out of the relationship - Use at least one of the Stress Tamers Teepa s 10-Minute Stress Tamers: - 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 what 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, then 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 the 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, stress-relief music, 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 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 a 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 Noticed Something! or HELP! Using the Time-Out Signal 16

17 Time-Out Signal BREATHE!!! Take a deep breath in Blow it all the way out Take another breath in Blow it out Take one final breath in and SING IT OUT! Feel what happened to you Look at what happened to the people around you Think about how and when you might do this Reach Out to Someone Else: - Hold someone s hand - Give someone a hand rub - Say yes to a hand rub or shoulder rub from someone else - Breathe while they do the work, then switch - Play this game with another twosome Support Groups are Available For: - People with dementia - Caregivers - Family members - Those recovering from the loss of the person they have cared for Playmate: Hey, hey, hey playmate Come out and play with me And bring your dollies three Climb up my apple tree Call down my rain barrel Slide down my cellar door And we ll be jolly friends forever more. History According to Kids: - Ancient Egypt was old. It was inhabited by gypsies and mummies who all wrote in hydraulics. They lived in the Sarah Dessert. The climate Of the Sarah is such that all the inhabitants have to live elsewhere. - Solomon had three hundred wives and seven hundred porcupines. He was an actual hysterical figure as well as being in the bible. It sounds like he was sort of busy too. 17

18 - Socrates was a famous old Greek teacher who went around giving people advice. They killed him. He later died from an overdose of wedlock which is apparently poisonous. After his death, his career suffered a dramatic decline. - In the first Olympic games, Greeks ran races, jumped, hurled biscuits, and threw the java. The games were messier then than they show on TV now. - Madman Curie discovered radio. She was the first woman to do what she did. Other women have become scientists since her but they didn't get to find radios because they were already taken. - Sir Francis Drake circumcised the world with a 100 foot clipper which was very dangerous to all his men. - Johann Bach wrote a great many musical compositions and had a large number of children. In between he practiced on an old spinster which he kept up in his attic. Bach died from 1750 to the present. Bach was the most famous composer in the world and so was Handel. Handel was half German, half Italian, and half English. He was very large. How many dogs does it take to change a light bulb? Golden Retriever: The sun is shining, the day is young, we've got our whole lives ahead of us, and you're inside worrying about a stupid burned out bulb? Border Collie: Just one. And then I'll replace any wiring that's not up to code. Dachshund: You know I can't reach that stupid lamp! Rottweiler: Make me Boxer: Who cares? I can still play with my squeaky toys in the dark. Lab: Oh, me, me!!!!! Pleeeeeeeeeze let me change the light bulb! Can I? Can I? Huh? Huh? Huh? Can I? Pleeeeeeeeeze, please, please, please! German Shepherd: I'll change it as soon as I've led these people from the dark, check to make sure I haven't missed any, and make just one more perimeter patrol to see that no one has tried to take advantage of the situation. Jack Russell Terrier: I'll just pop it in while I'm bouncing off the walls and furniture. Old English Sheep Dog: Light bulb? I'm sorry, but I don't see a light bulb! 18

19 Cocker Spaniel: Why change it? I can still pee on the carpet in the dark. Greyhound: It isn't moving. Who cares? Poodle: I'll just blow in the Border Collie's ear and he'll do it. By the time he finishes rewiring the house, my nails will be dry. Australian Shepherd: First, I'll put all the light bulbs in a little circle... How many cats does it take to change a light bulb? The Cat's Answer: Cats do not change light bulbs. People change light bulbs. So, the real question is: "How long will it be before I can expect some light, some dinner, and a massage?" Let Go: How it used to be How it should be How you should be ALL OF WHICH PROVES, ONCE AGAIN, THAT WHILE DOGS HAVE MASTERS, CATS HAVE STAFF! Identify What you re good at, and what you re not Who can help, and how they can help What really matters Final Suggestions: Back off, change something and try again Adopt a SO WHAT mentality Try a support group Accept yourself, and the person with dementia Look for the JOY!!! 19

20 DISCLAIMER What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others 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 20