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Working with Unaware or

Novice Helpers!

Changing What is Possible for a Better Outcome

Reframing the Situation: Learning to Interpret & Respond

When Dementia is Part of the Picture & Meet Unmet Needs

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…..

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Why Is This So Difficult for Us When We are Challenged by Unaware & Novice?

• MANY abilities can be affected– Thoughts– Words– Actions– Feelings

• Abilities can vary – Moment to moment– Morning to night– Day to day– Person to person– Place to place

• Some people are predictable BUT complicated– Specific brain behaviors– Typical patterns– Some parts are hard to activate

• Brain change is hard… – Stressed by time limits– Getting parts to work

together– Can lose ground – go back

What Do We Notice First?

The person is NOT doing what we want to see or what helps!

What observable behaviors are we talking about?

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So WHY is this happening?

What is DRIVING the Behavior?

My Examples • How to be a F PoA or HC PoA –• MD visit problems• ‘Losing’ Important Things• Getting Lost – time, place, situation• Unsafe task performance• Repeated calls & contacts• Refusing help & care• ‘Bad mouthing’ you to others • Making up stories - confabulation• Undoing what works or was done• Swearing/cursing, sex talk, racial slur,

ugly words• Making 911 calls• Forcing day & night routines• Sleep problems –too little or napping• Not following care/rx plans - denying• No initiation – can’t get started• Perseveration – can’t stop repeating• Communication problems - not talking

any more

• Defensive thinking• Shadowing - following• Wandering off or leaving• Seeing things that actually did not

happen that way• Touching or doing without permission• Threatening the PLwD• Forcing undressing in or not changing

the PLwD when needed• Reactions to intimacy & sexuality• Being rude - intruding• Feeling ‘sick’ – not doing ‘anything’• Use of drugs or alcohol to ‘cope’• Restraining the PLwD• Involved in falls & injuries• Poorly managing contractures &

immobility• Risk of causing infections & pneumonias• Causing problems w/ eating or drinking

Rethink Their ‘Challenging Behaviors’

REFRAME asUnmet Needs

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Top Five Unmet Needs:

• Hydration and Nourishment• Wake-sleep and active-rest cycles• Elimination: all forms• Find Comfort: 4Fs 4Ss• Pain-free:

– Physical – body– Emotional – relationships– Spiritual – belonging/purpose

• Angry

• Sad

• Lonely

• Scared

• Bored – Lacking Purpose

•Physical Needs: •Signals of Emotional Distress:

Breathe!!!Take a deep breath inBlow it all the way outTake another breath in

Blow it outTake one final breath in and

Sing it out….

Feel what happened to youLook at what happened to the people around you

Think about how and when you might do this

Let Go:

How it ‘used to be’

How it ‘should be’

How you ‘should be’

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What Makes ‘BEHAVIORS’ Happen?

• SIX pieces…

– The person & who they have been

• Personality, preferences & history

– Other medical conditions & sensory status

– The state of cognitive ability … NOW

– People - How you help -

• Approach, behaviors, words, actions, & reactions

– The environment – setting, sound, sights

– The whole day… how things fit together

First Piece of the Puzzle

The person & who they have been• Personality, preferences & history

Life Long Personality Traits & Preferences Make a Difference

• We are more of who we have always been… UNLESS

• We have always been covering up who we really are – we decide to ‘let go’… OR

• Dementia robs us of our ability to be the way we want to be… OR

• Dementia causes us forget ‘how’ we are supposed to be and lets us be ‘free’

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Personal Preferences Matter

• We like what we like!

• With DEMENTIA the ‘likes’ can change

• Old preferences will need to be revisited

• The Challenge is to HONOR what is important BUT change what is needed

• Our willingness to meet the person’s changing NEEDS is essential

• Changes are made harder by our sense of LOSS and GRIEF

Some Personal Preferences

• Appearance

• Behaviors

• Language

• Daily routines

• Foods & Drinks

• Music

• Touch & Textures & Noise & Space

• Worship – Spiritual practices

How Does Dementia Affect This?

• Memory

• Language – understanding & production

• Self-care skills

• Sensation

• Emotional control

• Reasoning & thinking

• Vision

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How Might This Work with YOU?

Personality traits

Personality Traits

Who are you?

• 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?

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Some ‘stuff’ we think/feel people do on purpose

is really just ‘WHO’ they are

Which is BETTER?

There is no BETTER

Just Different…

Just Ranges…

What About the Person with Dementia?

• They are at HOME

• They have needs – how will we help?

• How can we change the environment to help?

• Who needs to know this?

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Second Piece of the Puzzle

Other medical conditions

Sensory status – vision, hearing, sense of touch, balance, smell, taste

Medications

Drugs that can affect cognition

• 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

Primitive Brain is in Charge of:•Survival –

–Autonomic protective – fright, flight, fight

–Pleasure seeking – needing joy

•Thriving – Running the Engine

–Vital systems

–Wake-sleep

–Hunger-thirst

–Pain awareness and responses

–Infection recognition & control

•Learning New and Remembering it

–Information

–Places Awareness

–Time Awareness

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Third piece of the puzzle:type(s) and current state of

dementia…

Complicated!!!!

Now for the GEMS…

Sapphires

Diamonds

Emeralds

Ambers

Rubies

Pearls

copyright - Positive Approach LLC -

2012 reprint with permisison

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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 – Big Movements

Pearls – Hidden in a Shell - Immobile

copyright - Positive Approach LLC -

2012 reprint with permisison

Fourth Piece of the Puzzle

YOU

AND OTHERS

What shouldn’t we do???

• Argue

• Make up stuff that is NOT true

• Ignore problem behaviors

• Try a possible solution only once

• Give up

• Let them do whatever they want to

• Force them to do it

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So WHAT should we do???

Build & Use Skills!

Remember

who has the healthy brain!

Believe -

People helping PLwD

Are doing

The BEST they can!

Until they can do better!

Fifth Piece of the Puzzle

Environment

Physical

Sensory

Social

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Looking At the Environment

What Helps – What Hurts???

Supportive Environments

• Include 2 Factors

– What you LIKE…

Supportive Environments

• Include 2 Factors

– What you LIKE…

– What’s GOOD for you!

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Supportive EnvironmentsThe 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 See

• What you Hear

• What you Feel

• What you Smell

• What you Taste

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Environments Can

Support Life!

Use them Wisely

Sixth Piece of the Puzzle

Daily Routines and Programming

Filling the Day with Valued Engagement

Gem Level Programming

Examples of Meaningful Activities

•Productive Activities – sense of value & purpose

•Leisure Activities – having fun & interacting

•Self-Care & Wellness – personal care of body & brain

•Restorative Activities – re-energize & restore spirit

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Productive Activities

• Helping another person

• Helping staff

• Completing community tasks

• Making something

• Sorting things

• Fixing things

• Building things

• Organizing things

• Caring for things

• Counting things

• Folding things

• Marking things

• Cleaning things

• Taking things apart

• Moving things

• Cooking/baking

• Setting up/breaking down

• Other ideas….

Active Passive

• Socials

• Sports

• Games

• Dancing

• Singing

• Visiting

• Hobbies

• Doing, Talking, Looking

• Entertainers

• Sport Program/event

• Presenters

• Lobby sitting

• TV programs – watched

• Activity watchers

• Being done to

Leisure Activities

Cognitive Physical

• Table top tasks– Matching, sorting, organizing,

playing

• Table top games– Cards, board games, puzzles…

• Group games– Categories, crosswords, word

play, old memories

• Exercise

• Walking

• Strengthening tasks

• Coordination tasks

• Balance tasks

• Flexibility tasks

• Aerobic tasks

• Personal care tasks

Self-Care & Wellness Activities

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Rest & Restorative Activities

• Sleep – Naps

• Listen to quiet music with lights dimmed

• Look at the newspaper

• Look at a calm video on TV screen

• Rock in a chair

• Swing in a porch swing

• Walk outside

• Listen to reading from a book of faith

• Listen to poetry or stories

• Listen to or attend a worship service

• Stroke a pet or animal

• Stroke fabric

• Get a hand or shoulder massage

• Get a foot soak & rub

• Listen to wind chimes

• Aroma therapy

Teepa’s Rules

• Music at least TWICE a DAY

• Something Productive for each EMERALD resident

• Play with people – keep it adult - watch for cues

• Smooth out Transitions -

• If they can DO something support their doing, don’t

do to them or for them

• Encourage helping and ALWAYS say THANK YOU

• Respect space preferences – introverts/extroverts

• Match Sensory Experience to Preferences

– Sight, sound, smell, touch, taste

Each DAY

• Before Breakfast– What do we want?

– How will we do it?

• Breakfast

• After Breakfast– What do we want?

– How will we do it?

• Lunch

• After Lunch– What do we want?

– How will we do it?

• Dinner– What do we want?

– How will we do it?

• Bedtime– What do we want?

– How will we do it?

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So – A Quick Look at ‘C’

Consequences – What Happens?

What Happens?Traditionally

• We wait till it gets ‘dangerous’ or at least ‘risky’

• We blame …

• We ‘knee jerk’ react

• We treat the immediate

• We become ‘parental’

• We become judges

• We give up

• We go thru the motions

• We go to drugs – #1

–anti-anxiety & anti-psychotic

Non-Traditionally

• Behavior = Unmet Need

• ABC ‘Annoying’ behaviors

• Become a detective

• Get EVERYONE involved early and often

• Re-look & monitor - lots

• Change what is easiest first

• Change what can be controlled

• Celebrate all improvements

• Start by changing OURSELVES

What Can YOU Control? OR NOT!

CONTROL…

– The environment –setting, sound, sights

– The whole day… how things fit together

– How the helper helps -• Approach, behaviors,

words, actions, & reactions

NOT CONTROL

– The person & who they have been

• Personality, preferences & history

– The cognitive abilities… NOW

– Other medical conditions & sensory status

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For your persons who are novice or unaware

REFRAME…

Get interested and excitedbe challenged!

Describe the Behavior

• Consider video to investigate

• Use objective language to describe “THE BEHAVIOR”

• Investigate NON-CHALLENGING BEHAVIOR -investigate what is going on when ‘the behavior’ is NOT happening…..

• Check it out from all perspectives… 360

Investigate Carefully!!!

From Microscope to Telescope….

• Use a sensory approach

– look, listen, feel, smell, taste, movement

• Check out the environment

– Look at public, personal, intimate space issues

– Get in their ‘shoes’ & position

• Pay attention to cues and responses

• Look at timing, sequencing, & responses

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What Makes Better ‘BEHAVIORS’ Happen?

• SIX pieces…

– Recognize and support their cognitive ability

– Respect the person & who they have been

• Personality, preferences & history

– Notice their health, stress, body & sensory status

– Control the environment – setting, sound, sights

– Check out the whole day… how things fit together

– How you help -

• Approach, behaviors, words, actions, & reactions

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