DEMENTIA a syndrome NOT a diagnosis. Matching Your Help to the Needs & Abilities of the Person with Dementia. The Basics for Success

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Matching Your Help to the Needs & Abilities of the Person with Dementia Using What Remains While Acknowledging What is Gone Teepa Snow, Positive Approach, LLC to be reused only with permission. 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 DEMENTIA a syndrome NOT a diagnosis - Failure in at least TWO parts of the brain - Can t be fixed, stopped, or improved - Progressive will get worse over time - Terminal will result in death 1

DEMENTIA Alzheimer s Disease Early - Young Onset Normal Onset Vascular Dementias (Multi-infarct) Lewy Body 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 Parkinson s Normal Positron Emission Tomography (PET) Dementia Progression vs. Normal Brains Early Dementia Late Dementia Child G. Small, UCLA School of Medicine. Teepa Snow, Positive Approach, LLC to be reused only with permission. Normal Brain Alzheimers Brain Teepa Snow, Positive Approach, LLC to be reused only with permission. 2

Learning & Memory Center Hippocampus BIG CHANGE Teepa Snow, Positive Approach, LLC to be reused only with permission. Understanding Language BIG CHANGE Teepa Snow, Positive Approach, LLC to be reused only with permission. Hearing Sound Not Changed Teepa Snow, Positive Approach, LLC to be reused only with permission. 3

Sensory Strip Motor Strip White Matter Connections BIG CHANGES Automatic Speech Rhythm Music Expletives PRESERVED Formal Speech & Language Center HUGE CHANGES Teepa Snow, Positive Approach, LLC to be reused only with permission. Executive Control Center Emotions Behavior Judgment Reasoning Teepa Snow, Positive Approach, LLC to be reused only with permission. Vision Center BIG CHANGES Teepa Snow, Positive Approach, LLC to be reused only with permission. 4

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 & Hands How you help - Sight or Visual cues - Verbal or Auditory cues - Touch or Tactile cues Use empathy & Go with the flow Reality Orientation Telling Lies 5

First Connect Then Do - 1 st Visually - 2 nd Verbally - 3 rd Physically - 4 th Emotionally - 5 th Individually Progression Look for What Remains NOT Just What is Lost See GEMS Sapphires - Diamonds - Emeralds - Ambers - Rubies - Pearls 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 6

Diamonds - Still Clear - Sharp - Can Cut - Hard - Rigid - Inflexible - Many Facets - Can Really Shine Visual Cues that Help - Personalized room - Way finding signs - Highlighted schedules - Familiar & inviting environments - Familiar set-ups for tasks or activities - Personal approach with a smile - Place cards at table settings - Wear name tags on right side Verbal Cues that Help - Knock before entering - Use Sir and Ma am, be respectful - Ask permission to do things in the room - Offer positive comments - Issue invitations not orders - Ask for help or input - Frame as a RULE for everyone - Acknowledge their skill, ask for their support or understanding --- a favor 7

Tactile Cues that Help - Hand shake greetings - Return of friendly affection touches - Responsive hugs - Hand-under-hand comforting - Back rubs with permission - Hand & foot massages pampering (getting used to us touching & doing) BAD Helper Habits to BREAK - Saying Don t you remember - Not recognizing or accepting differences - Trying to force changes in roles or responsibilities - Trying to take over completely - Taking responsibility for saying NO - Accepting things at face value - Arguing Emeralds - Changing color - Not as Clear or Sharp - Vague - Good to Go Need to DO - Flaws are Hidden - Time Traveling 8

Visual Cues that Help - The environment - Overall look (friendly, fun, familiar, forgiving) - Surfaces to work on or do things on - Places to sit (paired chairs) - Set up Props (objects that say what to do) - Highlighted areas (light, color contrast, clutter reduction, organized) - Hidden what is NOT to be done, what is already done, what triggers distress More Visual Cues that Help - You - Facial expression - Friendly - Concerned - Gestures - Invite with gestures and your face - Indicate next item to use, or options - Offer items - Offer an item in correct orientation - Present two to pick from Verbal Cues that Help - Tone of Voice - Friendly - Interested - Concerned - Reduce and Focused words - Use preferred name for attention - Match words with gestures or offering - Listen and use their words to connect 9

More Verbal Cues - When becoming distressed - Use PPA Let them come to you, if possible - Listen - Get emotionally connected to where they are - Use empathic comments - Listen for key words - Go with their FLOW don t push for the change - THEN Use redirection, NOT distraction Physical Cues that Help - Limit this form of helping! - Match it with a visual & verbal cue combo - Offer objects don t put hands on - Share the task - - Give them something to do while you do your part - Do it with/to someone else first, then approach them More Physical Cues - When distressed - Match your touch to their preferences - Hand-under-Hand FIRST - Back rub if interested - Hug show first - Increase space and distance, if cued - BACK OFF, if it is not working 10

What NOT to DO - DO NOT point out errors or focus on wrong - DO NOT offer physical assist 1 st - 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 like children - Do NOT react remember to respond Ambers - Amber Alert - Caution! - Caught in a moment - All about Sensation - Explorers Visual Cues that Help - Automatic social greeting signals - Lighted work surfaces with strong props - Demonstrations work along side - Model the actions - Do the action one time, then offer the prop - Show one step at a time - Show a NEW item, then cover the old 11

Verbal Cues that Help - Call name - Use simple noun, verb, or noun + verb - Cookie? - Sit down - Let s go (with gesture) - Give simple positive feedback - Listen for their words, then - use a few and leave a blank at the end of the sentence Physical Cues that Help - Show the motion or action wanted - Touch the body part of interest - Position the prop for use light touch - Show the motion on yourself - Use hand under hand guidance - Offer the prop once started encourage their use of the item 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 12

Rubies - Hidden Depths - Red Light on Fine Motor - Comprehension & Speech Halt - Coordination Falters - Wake-Sleep Patterns are Gone Visual Cues that Help - Demonstrate what you want - Give big movements to copy - Move slowly & with rhythm - Present cues in central visual field about 12-18 inches out - Hold things still allow exploration - Offer your hand - Smile while offering support Verbal Cues that Help - Call name to get attention at 6 out - Use song to connect - Give 1-3 words only - Combine verbal direction with gesture or demo - Give one action cue at a time - Match tone/inflection to intent - Give positive Strokes with attempts 13

Physical Cues that Help - Hand-under-hand - Touch body part to be moved or used - Place hand/foot then gesture - Offer comfort touch as desired before task attempt - Back rubs - Flat and slow to calm - Finger tips and quick circles to awake How to Help - SLOW yourself DOWN - Hand under hand - Move with first then guide - Learn about patterns of needs - Use music and rhythms help get or stop movement - Use touch with care - Combine cuing & do SLOW 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 14

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 Pearls - Hidden in a Shell - Still & Quiet - Easily Lost - Beautiful - Layered - Unable to Move Hard to Connect - Primitive Reflexes on the Outside Pearls - The end of the journey is near - Multiple systems are failing - Connections between the physical and sensory world are less strong - We are often the bridge the connection - Many Pearls need our permission to go - They are still our moms, dads, spouses, friends - They will go in their own time - IF we don t try to change what is 15

Visual Cues to Help - Get into supportive position - Place your face in the central field of vision - Make sure light comes from behind the person into your face - Bring up lights carefully - Move slowly so they can follow you - Place items to be used in central field Verbal Cues to Help - Keep your voice deep & calm - Put rhythm in your voice - Tell what you are doing and what is happening while you give care - Reflect emotions you think you see - Offer positive comments & familiar phrases as you offer care - Quiet down, if signaled to do so Touch Cues to Help - Use firm, but gentle palm pressure at joints to make contact - Always try to maintain contact with one hand while working with the other - Once physically connected keep it - Use flats of fingers and palms for care - Always use hand under hand when doing something intense 16

Progression of the Condition - To the TUNE of This Old Man Sapphire bright, 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 though! 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! 17

EMERALD GO, I like to DO I make mistakes, but I am though! 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, once I copy you What I see 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! 18

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. I Noticed Something! or HELP! - Using the Time-Out Signal Time Out Signal 19

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 What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others Let Go: - How it used to be - How it should be - How you should be 20

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!!! I Will Change! (to the tune of This Little Light of Mine) By Teepa Snow 21

I m gonna meet and greet Before I start to treat I m gonna meet and greet Before I check your feet I m gonna meet and greet Before I help you eat How I start sets us up to succeed! No more just Getting it Done I m gonna DO with you No more just Getting it Done I m gonna help you thru No more just Getting 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! 22