Dealing with Distress When Dementia is in the House

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1 Dealing with Distress When Dementia is in the House Clients, Families & Staff Teepa Snow Keys to Remember - It s hard to take care of a person with dementia - Many families had issues before dementia - Dementia affects all members of the system - It s different taking care of a person with dementia who is part of your family What Causes Distress or Resistance? - Mis-match between: - What we expect versus what happens - What we can do versus what is needed - What was versus what is - What we want versus what we get - What we want versus what the other wants - Who we are with versus who we want to be with - Where we are versus where we want to be - Who we are versus who we want to be.. 1

2 We THINK PERCEIVE we are They us as Logical Honest Flexible Clear Concerned Objective Right Irrational Deceitful or Harsh Wishy-washy Confusing Intrusive or pushy Insulting Wrong This is True for Us Talking to Family AND Family Talking to Person with Dementia WHY???? Positron Emission Tomography (PET) Alzheimer s Disease Progression vs. Normal Brains Normal Early Alzheimer s Late Alzheimer s Child G. Small, UCLA School of Medicine. 2

3 Stress Plays a Huge Role Using Neo-Cortex We can understand other s perspective Using Limbic ONLY They understand from only one side We can change our behaviors and actions We can decide to do things differently We can ask for help They react not respond They are at the mercy of their reflexes They ask for help through actions not words Much easier to understand when - You re rested - Feeling emotionally and spiritually strong - Able to disengage and not take it personally - In other words, probably not a family member - When you are not intensely invested Four Major Situations: - Resistance from the WHOLE family - Resistance from the primary caregiver - Resistance from another family member the split - Resistance from the person 3

4 All Resistance WHY? - Causes - 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 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! For all Resistance - Recognize it - Acknowledge it - Address it -Connect - Share info - Actively listen -Develop options - Support change - Practice skills -Agree to try - Re-Check for change. - IF It is resolved. CELEBRATE - It is still there. Consider your options -Recycle thru look carefully at everything -Step away & give someone else a chance to help 4

5 Primary Caregiver Resistance - Possible Issues: - Turf - Unknown or unrecognized issue - Role change - Control & responsibility change - Overwhelmed with other stuff - Personality trait differences - Personal health issues Primary Caregiver Resolution - Empathy - Open-ended questions - Non-judgmental attitude & behavior - Curiosity - Openness to hear & understand - Review & restate - Reflection shared values - Offer concrete options - Try rather than MUST Whole Family Resistance - Ignorance - Unknown, unrecognized, historic issues - Role changes - Control & responsibility changes - Sense of being dissed - Overwhelmed with other stuff - Cultural group differences - Unvoiced financial concerns 5

6 Whole family 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 time - Meeting & talking & data helps with relationships Split Resistance - Turf - Unknown or unrecognized issue - Role changes - Control & responsibility change - Overwhelmed with other stuff - Personality trait differences - Family history & old baggage - THE Condition itself MAY be a BIG PIECE - Dementia - Depression - Delirium Split 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 6

7 Person with Dementia Resistance - Personality traits & preferences - Other health & mental health issues - Flight, Fight, Fright Reactions combined with inability to hold onto information - Old family history - Level of Loss and Ability - Type of dementia(s) Person Resolution - Match helping behaviors to Gem Level - Diamonds authority figures & try & old values - Emeralds spend time learning more what will drive and engage them? VVP cues that help - Ambers figure out sensory need and tolerance issues and need to explore - Rubies Help family get a new JOB and if shadowing watch behaviors and visuals that foster the connection assign helper to learn For ALL 7

8 Some techniques that help - Increase knowledge about dementia & 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 Old Habits Are Hard to BREAK! - Sometimes a cigar is just a cigar - Example diet or exercise smoking - Medical example hand washing - Why? -Have to build new connections in brain -Have to shut down out ones -Takes attention & energy 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 8

9 Help Families Cope and Improve Care of Person with Dementia Information Based on preference Accurate Interpreted Spiritual Support Finding meaning Finding guidance Emotional Support Individual Group Asking for help Other family members Other informal helpers Systems of care We MUST Believe - Families are doing the best they can - The people with dementia are doing the best they can - Sometimes it takes more than love to do a good job Finally Know when to CUT BAIT! - Is it worth it? - Is this a one time thing OR is it going to be a pattern? - What is the cost to your system VERSUS the benefit to the same? - Can you ID either or choices to present? - Is there someone else who might be able to help better? 9

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