The ABCs of Dementia and Caregiving: Essentials for Good Care

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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 2 The ABCs of Dementia and Caregiving: Essentials for Good Care 3 1

PET and Aging: PET Scan of 20-Year-Old Brain PET Scan of 80-Year-Old Brain ADEAR, 2003 4 As we age, we do NOT lose function in our brains, UNLESS Something Goes Wrong With Our Brains 5 Ten Early Warning Signs for Alzheimers and Some Other Dementias: -Memory loss for recent or new information, repeats self frequently -Difficulty doing familiar but difficult tasks: managing money, medications, driving -Problems with word finding, mis-naming, or misunderstanding -Getting confused about time or place, getting lost while driving, missing several appointments -Worsening judgment: not thinking thing through like before -Difficulty problem-solving or reasoning -Misplacing things, putting them in odd places -Changes in mood or behavior -Changes in typical personality -Loss of initiation, withdraws from normal patterns of activities and interests 6 2

Normal vs. Not Normal Aging: Normal Aging: Slower to think Slower to do Hesitates more More likely to look before leaping Know the person but not the name Pause to find words Reminded of the past HARDER 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 VERY DIFFERENT 7 What Could It Be? - Another medical condition symptom - Medication side effect - Hearing loss or vision loss - Depression/anxiety - Acute illness, delirium - Pain or medication for pain - Other things 8 Mimics of Dementia: Depression/Anxiety: can t think can t remember not worth it loss of function mood swings personality change change in sleep Delirium: swift change hallucinations delusions on and off responses infection toxicity dangerous 9 3

Drugs That Can Affect Cognition in Elders: Anti-arrhythmic agents Antibiotics Antihistamines - decongestants Tricyclic antidepressants Anti-hypertensives Anti-cholinergic agents Anti-convulsants Anti-emetics Histamine receptor blockers Immunosuppressant agents Muscle relaxants Narcotic analgesics Sedative hypnotics Anti-Parkinsonian agents Washington Manual Geriatrics Subspecialty Consults edited by Kyle C. Moylan (pg 15) published by Lippencott, Wilkins & Williams, 2003 10 Screening Options: Old: - MMSE New: -SLUMS: 7 minute screen -Animal fluency: 1 minute # of animals - Clock Drawing: 2-step - Full neuropsychological testing panel 11 So What is Dementia? - It changes everything over time - It is NOT something the person can control - It is NOT always the same for every person - It is NOT a mental illness - It is real - It is hard at times 12 4

What is Dementia? It is BOTH a chemical change in the brain AND a structural change in the brain So Sometimes they can and sometimes they can t 13 Four Truths About Dementia: - At least 2 parts of the brain are dying - One related to memory and the one other - It is chronic can t be fixed - It is progressive it gets worse - It is terminal it will kill, eventually 14 The person s brain is dying 15 5

Dementia does not equal Alzheimers does not equal Memory problems 16 DEMENTIA Alzheimers 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 17 Alzheimers: - New information lost - Recent memory worse - Problems finding words - Misspeaks - More impulsive or indecisive - Gets lost - Notice changes over 6 months 1 year 18 6

Vascular Dementia: - Sudden changes - Picture varies by person - Can have good and bad days - Judgment and behavior not the same - Spotty losses - Emotional and energy shifts - 3-30 year duration 19 Lewy Body Dementia: - Movement problems, falls - Visual hallucinations - Fine motor problems: hands, swallowing - Episodes of rigidity and syncopy - Nightmares or insomnia - Fluctuations in abilities - Drug responses can be extreme and strange 20 Fronto-Temporal Dementias: - Many types - Frontal: impulse and behavior control loss - Says unexpected, rude, mean, odd things to others - Disinhibited about food, drink, sex, emotions, actions - Becomes stuck or obsessed about things -Temporal: language loss - Can t speak or get words out - Can t understand what is said, uses nonsense words 21 7

What if it doesn t seem to be one of these? - There are MANY other types of dementia - There are also atypical dementias - It may also be a combination of different dementias 22 23 Normal Brain Used with permission from Alzheimers:The Broken Brain, 1999 University of Alabama Alzheimers Brain Learning and Memory Learning & Center Memory Hippocampus Center Hippocampus BIG BIG CHANGE 24 8

Understanding Language BIG CHANGE 25 Hearing Sound Not Changed 26 Sensory Strip Motor Strip White Matter Connections BIG CHANGES Automatic Speech Rhythm Music Expletives PRESERVED Formal Speech and Language Center HUGE CHANGES 27 9

Executive Control Center: Emotions Behavior Judgment Reasoning 28 Vision Center BIG CHANGES 29 Dementia cannot be cured, but it can be treated: - With knowledge - With skill building - With commitment - With flexibility - With practice - With support - With compassion 30 10

How Can We Help Better? It all starts with your approach! 31 Five Skill Areas: Getting Connected Hand-under-Hand Assistance Ways of Cueing and Helping Time-Out Signal GEMS Levels 32 Positive Physical Approach - Pause at edge of public space (6 feet) - Approach within visual range - Approach slowly -Offer your hand and make eye contact, smile -Call the person by name -Stand to the side to communicate - Respect personal space -Wait for a response 33 11

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! 34 Hand-under-Hand Assistance 35 36 12

Ways of Cueing and Helping: - Sight or Visual cues - Verbal or Auditory cues - Touch or Tactile cues 37 Visual Cues: Signs Pictures Props/objects Gestures Facial expressions Demonstrations 38 Verbal Cues: Keep it simple and short Directed Matched to visual cues 39 13

Touch Cues: Touching a body part Handing the person an item Using Hand-under-Hand assist 40 Time-Out Signal: 41 Progression of Dementia: The GEMS Sapphires Diamonds Emeralds Ambers Rubies Pearls 43 14

- 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 44 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 45 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 46 15

47 -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 48 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 49 16

Progression of the Condition To the tune of This Old Man 50 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! 51 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! 52 17

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. 53 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! 54 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! 55 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. 56 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 57 To learn more about the information covered in this educational presentation, join our email list. Text TEEPA to 22828 Resources are provided free of charge. Message and data rates may apply to text. 58 19