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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 Caring for Someone When There Are Past Relationship Issues 4 Keys to Remember: - It s often hard to take care of any person with dementia - It s different taking care of a person with dementia when there are relationship issues or do not particularly like them 5 So Two Questions: Tell me what you like, enjoy, find pleasure in about the person you are caring for and your relationship with them? Tell me what annoys, frustrates, irritates, angers, scares, paralyzes you about the person you are caring for and your relationship with them? copyright - Positive Approach, LLC

3 Caring for Someone Else: You have to use your brain and your body! So, let s talk about our brains first 7 Goals: Understanding How Brains Change Understanding How to Help (or Hinder) Brain Change We have the power to help brains change with our skill and support 8 Understanding How a Brain Changes: When the unexpected happens or there is an unmet need, learn to respond and not to react 9 3

4 Primitive Brain Survival Brain Keep Me Safe and Satisfied Thinking Brain Thriving Brain I am Engaged & Curious My basic needs have been met and I am satisfied and safe copyright - Positive Approach, LLC We Have Two Brains; Cortical: the Neo-Cortex Thinking Brain Discriminating and Curious This part of the brain separates us from animals; it allows us to think logically, delay gratification, and see from others perspectives 11 When There are Challenges or Surprises, Watch Out for Those Amygdalae! With Your Words With Your Looks With Your Actions With Your Relationships copyright - Positive Approach, LLC

5 Let s Look at Care Situations and Options: What makes it better? Using your mature brain to respond What makes it worse? Letting your primitive brain take over 13 Understanding and Responding to Challenges, Unexpected Behaviors, and Unmet Needs: What is happening? Why is it happening? What helps? What makes it worse? How can we prevent it from happening in the first place? If it happens again, what can we do to make it better? 14 Why Is Life So Difficult for Those Involved? Many abilities are affected: Thoughts Words Actions Feelings It is variable Moment to moment Morning to night Day to day Person to person Place to place Some changes are predictable but complicated Specific brain parts Typical interaction between body and brain Some abilities are preserved If it is chronic or unpredictably repeated: More cortisol over time Different parts get hit differently Constant distress Chronic conditions develop (physical, emotional, cognitive) 15 5

6 Providing Care Requires: Working with Six Pieces of a Puzzle: -The person and who they have been - The person s health and fitness/illnesses - The person s brain changes -You, your background, skills, and life situation, and others around the person -The environment -Time and how the day fits together 16 Wellness, Health, and Fitness The Person Brain Changes Time Use People The Stakeholders Environmental Support 17 Brain Changes: Dementia: Type(s) Awareness Delirium Note GEM State(s): Changed abilities Retained abilities Variability Self-awareness Onset and duration The Person: Past and Present Life story: History Personality traits Preferences: Likes/dislikes Key values Joys and traumas Roles: Watch-Talk-Do Wellness, Health, and Fitness: Health Conditions and Physical Fitness: Fuel andfluids Meds and Supplements Emotional/Psychological Condition Sensory Systems Function Health Beliefs of Note Recent Changes: Acute Illnesses The Environment: Explore the Four Fs: Friendly Familiar Functional Forgiving Space: Intimate, personal, public Sensations See, hear, feel, smell, taste Surfaces Sit, stand, lie down, work Social People, activity, role, expectations People Care Partner and Others History - background Awareness Knowledge Skills Competence Relationship(s) Agenda(s) Resources Time: Time Awareness: where in life time of day passage of time Four Categories: (balance) Productive: gives value Leisure: Fun playful Wellness & Self Care Restorative: calm recharge Waiting 18 6

7 One Key: Understanding Yourself as a Caregiver Identifying Strengths and Limitations and Learning to Set Limits for Yourself! 19 It s Like Putting Together a Jigsaw Puzzle: - What is your life experience with care? - Who are you, personality-wise? - How do you learn new information best? - What is your relationship to the person? - What is the environment of care? - Where in the progression of the condition is the person? - What are the resources available? 20 Who are you? Personality Traits: - Introvert - Extrovert - Lots of Details - Big Picture only - Logical - Emotional - Planning Ahead - Being in the moment Who is the person you are trying to help? 21 7

8 Introvert How Head First Plan Ahead copyright Positive Approach to Care 2015 Extrovert Why Heart First Go with the Flow 22 Introvert Wants ALONE think/feel time Wants to think it out inside Sensitive to space/boundaries Wants to control access to space and belongings Likes privacy Keeps home/work separate Wants prep time before doing Tends to internalize & self-rate Gets quiet & retreats when stressed or distressed Wants a sense of control Answers tend to be final How To Do It Wants to know how to do something before doing it Likes specifics & checklists Likes directions to follow Finds comfort in the familiar & the routine Wants expectations clearly spelled out Likes facts & evidence before doing New learning increases anxiety until it is routine Logic/Reason First Wants it to be FAIR & Equal Likes everyone to be judged under one set of rules May see individualization as favoritism Likes to solve problems Enjoys being right Tends to explore conflict Likes & wants information Wants data to analyze Seeks to understand the reason behind the behavior Plan Ahead Wants to PLAN ahead & follow the PLAN Uses schedules & lists Aware of time & its passing Works toward deadlines Wants a detailed plan to stay on target Becomes anxious with last minute changes Likes final decisions & finishing projects Focus: Looking ahead what s next? Extrovert Wants PEOPLE time Wants to explore with others Thinks out LOUD Asks questions Wants talk time to talk it through & to prep WITH another person Boundaries are flexible Space is to be shared Connection trumps control Seeks others approval & opinion Talks more & seeks more intimacy when stressed Why To Do It Wants to know why something is being done before doing it Belief in the value is critical Wants the big picture Details tend to be boring Likes to try it out and see what happens Likes to try variations not just repeat Drill practicing is NOT exciting Is excited & energized by new learning Feelings First Wants it to feel OK to all Wants harmony in the space Seeks to find common ground Likes when everyone is comfortable with decisions Monitors opinions/feelings Enjoys being kind & helpful Likes to lift spirits Feels case by case is better than a standard rule Seeks to appreciate the emotions behind behavior Go with the Flow Works in the moment Limited awareness of the passage of time Flexible with time and plans Deadlines are suggestions of when to get going or get done Final decisions are difficult Drafts are better revisit Re-sets priorities based on new info adaptable Delays allow more input or changes that improve Focus: what s happening now? 23 Life Experience: - Talents and Skills - Previous and Current Careers or Jobs - Volunteer Activities or Hobbies - Other Caregiving Roles - Care Receiving Roles - Helping and Support Roles - Knowledge of the Medical Community - Exposure to Dementia - Knowledge about Aging Issues 24 8

9 Learning Preferences: - We are all smart in different ways - It s not about if you are smart, it s about how you are smart! - You learn best if your preferred learning style is used! - If you know, you can ask for what you need! 25 Think about your relationship with the person. 26 Your Relationship: - What is your history? - Who had what roles? - Who else was involved? - Who else might you act like, look like, or sound like? - What is changing? How much? 27 9

10 If there are areas for concern or mismatches, you may need: - Someone to do what doesn t work - Someone to support you - Someone to relieve you - Someone to lead you - Someone to take turns with you - Someone you pay or support - A whole team of folks to help - Advisors to guide 28 Environmental Considerations: Place and Space Location Sound Lighting Privacy Security Equipment Furniture and Appliances Number of People Around Safety Access Usability Hidability 29 Current State of Care Receiver: - What is the level of impairment? - What are the behaviors? - What support is needed? - How willing is the person? - How aware is the person? - Who else knows? - Who else can/will help? 30 10

11 Resources: Money Time Energy Skills Space & Place Services and Programs People Equipment Training Support Groups Advisors: medical, legal, financial Agencies and Organizations 31 Respect Yourself: - Acknowledge your skills and talents - Recognize your limitations - Explore what is needed - Look for the matches - Identify the missing pieces - Decide on what to do - Decide on what not to do - Get help for what is needed - Be good to yourself! 32 We Think We Are: Logical Others May Perceive Us As: Irrational Honest Deceitful Clear Confusing Giving Insulting 33 11

12 So Who s Got the Mature and Healthy Brain??? We can understand another s perspective May be able to understand from only one side We can change our behaviors and actions May only react, not respond We can decide to do things differently We can ask for help May only be at the mercy of their reflexes May only ask for help through actions, not words 34 It s Much Easier to Use Your Healthy Brain When: - You re rested - You re feeling emotionally and spiritually strong - You re able to disengage and not take it personally - In other words, probably not in a dislike mode 35 Three Major Situations: - Resistance about the whole situation - Resistance about hands-on primary support and care - Insistence from others: meeting expectations 36 12

13 Causes: Why Resistance? - Lack of understanding what is wanted -Lack of ability to do what has been asked -Lack of a good relationship with you -Fear of what change will mean -Concern of being judged as wrong or incompetent or less -Fear that change will make it harder - Feels very comfortable with status quo 37 Why Resistance? Level 1: Not understanding Level 2: Not liking you or the message Level 3: Not liking your group, your type Or Just not wanting what you are offering! 38 For All Resistance: - Recognize it - Acknowledge it - Address it - Connect to share info and actively listen - Develop options, support change, practice skills - Agree to try - Re-check for change - If It is resolve, celebrate! - It is still there, consider other options: - Recycle through again and look carefully at everything - Step away and give someone else a chance to help 39 13

14 Primary Caregiver Resistance: - Possible Issues: -Turf - Unknown or unrecognized issue - Role change - Control and responsibility change - Overwhelmed with other things - Personality trait differences - Personal health issues 40 Primary Caregiver Resolution: - Empathy - Open-ended questions - Non-judgmental attitude and behavior - Curiosity - Openness to hear and understand - Review and restate - Reflection: shared values - Offer concrete options - Try rather than Must 41 -Ignorance Other s Insistence or Resistance: - Unknown, unrecognized, historic issues - Role changes - Control and responsibility changes - Sense of being disrespected - Overwhelmed with other stuff - Cultural group differences - Unvoiced financial concerns 42 14

15 Whole Group/Team Resolution: - Shared values and concerns help with getting the door open - Facts and specifics with reason - Emotional connection helps with feelings - Practice and rehearsal helps with skills - Planning helps with lack of time - Meeting and talking and data helps build relationships 43 Outsider Resistance: -Turf - Unknown or unrecognized issue - Role change - Control and responsibility change - Overwhelmed with other stuff - Personality trait differences -The Condition itself may be a big piece: -Dementia - Depression/Anxiety -Delirium 44 Outsider Resolution: - Create time for 1:1 - Build the relationship first - Identify specific concerns: short, simple, specific - Look for options or choices that might work - Ask to try to work with others - Ask for help with something agreed upon - Consider a time out - Be appreciative of concerns 45 15

16 Some Techniques That Help: - Increase knowledge about dementia and symptoms - Build appreciation of other points of view - Determine levels of resistance being experienced - Address different learning preferences - Use awareness of personality traits to connect 46 Old Habits Are Hard to Break! - Sometimes a cigar is just a cigar - Examples: diet, exercise, smoking - Medical example: hand washing Why? -Have to build new connections in brain -Have to shut down out ones - Takes attention and energy 47 So How Do We Change Best? - With intention - One little step at a time - With others - With practice - With attention - With positive reinforcement - With support - environment, people, self 48 16

17 How to Cope and Improve Care of Person with Dementia: Information: Based on preference Accurate Interpreted Emotional support: Individual Group Spiritual support: Finding meaning Finding guidance Asking for help: Other family members Other informal helpers Systems of care 49 Recognize that Grief is Real: - You might be grieving - The person you are trying to help may be grieving - There are 5 stages of grief: -Denial -Anger - Bargaining -Sadness - Acceptance 50 Why is This Hard? -Each of us will be going through these processes/stages at our own rate and in our own time - Because dementia keeps changing, we experience grief in moments as well as over time - It continues to surprise us - The person living with dementia is also grieving their losses 51 17

18 More on Grief and Loss: There are a few new items to add on: - Shock Stage - Testing Stage Two other terms: - Getting Stuck -Cycling copyright - Positive Approach, LLC So What Can We Do To Help? Recognize what is happening Decide to try to something different Get support in place to do it Do it 53 copyright - Positive Approach, LLC 2016 Helping with Positive Change: Your Job: -Figure out where you are and the person is in grief -Go to where you are first and the person second -Help the person move to the new state Their Job: 54 - Express what they are feeling - Figure out what is different and possible - Go through the positive change process 18

19 The Basics for Success: - Be a Detective, not a Judge - Look, listen, offer, think - Use your Approach as a screening tool - Match your help to remaining abilities 55 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 56 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