Seeing Dementia from theOther Side of the Mirror

Appreciating What is Happening for thePerson with Dementia

REALIZE …

• It Takes TWO to Tango…

or two to tangle…

Being ‘right’ doesn’tnecessarily translate into agood outcome for both ofyou

It’s the relationship that isMOST critical

NOT the outcome of anyone encounter

What is it NOT…NORMAL Aging

• Slower to think

• Slower to do

• Hesitates more

• More likely to ‘lookbefore you leap’

• Know the person butnot the name

• Pause to find words

• Reminded of the past

• For you, its 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 – evenlater

• Confused about pastversus now

• VERY DIFFERENT

Alzheimer’sDisease

•Early - Young Onset•Normal Onset

VascularDementias(Multi-infarct)

Lewy BodyDementia

DEMENTIA

Other Dementias•Genetic syndromes•Metabolic pxs•ETOH related•Drugs/toxin exposure•White matter diseases•Mass effects•Depression(?) or OtherMental conditions•Infections – BBB cross•Parkinson’s

Fronto-TemporalLobeDementias

What is Dementia?...

It is BOTH

• a chemical change in the brain

AND

• a structural change in the brain

• So…

Sometimes you can & sometimes you can’t

PET Scan of 20-Year-Old Brain PET Scan of 80-Year-Old Brain

PET and Aging

ADEAR, 2003

Positron Emission Tomography (PET)Alzheimer’s Disease Progression vs. Normal Brains

G. Small, UCLA School of Medicine.

NormalEarlyAlzheimer’s

LateAlzheimer’s Child

Normal Brain Alzheimers Brain

Brain atrophy• the brain actually

shrinks

• cells wither then die

• abilities are lost

• with Alzheimer’s area ofloss are fairlypredictable

• … as is the progression

• BUT the experience isindividual…

Learning &MemoryCenter

HippocampusBIG CHANGE

Memory Loss

• Losses– Immediate recall

– Attention to selected info

– Recent events

– Relationships

• Preserved abilities– Long ago memories

– Confabulation!

– Emotional memories

– Motor memories

Understanding Language – BIG CHANGE

Hearing Sound – Not Changed

Understanding• Losses

– Can’t interpret words

– Misses some words

– Gets off target

• Preserved abilities

– Can get facialexpression

– Hears tone of voice

– Can get some non-verbals

– Learns how to cover

Sensory StripMotor Strip

White MatterConnections

BIG CHANGES

Formal Speech &Language

CenterHUGE CHANGES

Automatic SpeechRhythm – Music

ExpletivesPRESERVED

Sensory Changes

• Losses

– Awareness of body and position

– Ability to locate and express pain

– Awareness of feeling in most ofbody

• Preserved Abilities

– 4 areas can be sensitive

– Any of these areas can behypersensitive

– Need for sensation can becomeextreme

Self-Care Changes

• Losses

– initiation &termination

– tool manipulation

– sequencing

• Preserved Abilities

– motions and actions

– the doing part

– cued activity

Language• Losses

– Can’t find the right words

– Word Salad

– Vague language

– Single phrases

– Sounds & vocalizing

– Can’t make needs known

• Preserved abilities– singing

– automatic speech

– Swearing/sexwords/forbidden words

ExecutiveControl Center

EmotionsBehaviorJudgmentReasoning

Impulse & Emotional Control

• Losses

– becomes labile &extreme

– think it - say it

– want it - do it

– see it - use it

• Preserved

– desire to berespected

– desire to be in control

– regret after action

Vision Center – BIG CHANGES

Vision

• Losses– Edges of vision –

peripheral field– Depth perception– Object recognition

linked to purpose– SLOWER to process –

scanning & shiftingfocus

• Preserved– ‘see’ things in middle

field– Looking at… curious

The Basics for Success…

• Be a Detective NOT a Judge

• Look, Listen, Offer, Think…

• Use Your Approach as a ScreeningTool

• Always use this sequence for CUES

– Visual - Show

– Verbal - Tell

– Physical – Touch

• Match your help to remaining abilities

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

First Connect – Then Do

• 1st – Visually

• 2nd – Verbally

• 3rd – Physically

• 4th – Emotionally

• 5th – Individually

To Connect

Start with the

Positive Physical Approach

Your Approach

• Use a consistent positive physicalapproach– pause at edge of public space

– gesture & greet by name

– offer your hand & make eye contact

– approach slowly within visual range

– shake hands & maintain hand-under-hand

– move to the side

– get to eye level & respect personal space

– wait for acknowledgement

Supportive Communication

• Make a connection

– Offer your name – ”I’m (NAME) ”… “andyou are…”

– Offer a shared background – “I’m from(place) …and you’re from…”

– Offer a positive personal comment – “Youlook great in that ….” or “I love that coloron you…”

Support to ‘Get it GOING!’

• Give SIMPLE & Short Info

• Offer concrete CHOICES

• Ask for HELP

• Ask the person to TRY

• Break the TASK DOWN to single stepsat a time

Give SIMPLE INFO

• USE VISUAL combined VERBAL(gesture/point)– “It’s about time for… “– “Let’s go this way…”– “Here are your socks…”

• DON’T ask questions you DON’T want to hearthe answer to…

• Acknowledge the response/reaction to yourinfo…

• LIMIT your words – Keep it SIMPLE• WAIT!!!!

Early Connections

• ID common interest

• Say something nice about the person or theirplace

• Share something about yourself andencourage the person to share back

• Follow their lead – listen actively

• Use some of their words to keep the flowgoing

• Remember its the FIRST TIME! – expectrepeats

• Use the phrase “Tell me ABOUT …”

CONNECT

• Make an Emotional Connection

– Later in the disease

• Use props or objects

• Consider PARALLEL engagement at first– Look at the ‘thing’, be interested, share it over….

• Talk less, wait longer, take turns , COVER don’tconfront when you aren’t getting the words,enjoy the exchange

• Use automatic speech and social patterns tostart interactions

• Keep it short – Emphasize the VISUAL

Do’s• Go with the FLOW

• Use SUPPORTIVE communicationtechniques– Use objects and the environment

– Give examples

– Use gestures and pointing

– Acknowledge & accept emotions

– Use empathy & Validation

– Use familiar phrases or known interests

– Respect ‘values’ and ‘beliefs’ – avoid the negative

DON’Ts• Try to CONTROL the FLOW

– Give up reality orientation and BIG lies

– Do not correct errors

– Offer info if asked, monitoring theemotional state

• Try to STOP the FLOW

– Don’t reject topics

– Don’t try to distract UNTIL you are wellconnected

– Keep VISUAL cues positive

To HelpWhen DISTRESSED

First - CONNECTThen - Use Supportive

CommunicationFinally – Move together to NEW

To Communicate…

Be a Detective

NOTa Judge

• Try to figure out WHATis being communicated– Words– Thoughts– Actions– Needs– Beliefs

• DON’T assume orpresume

• DON’T discount mebecause of HOW Ideliver the message

To Communicate & Figure ItOut…

• CONNECT– Visually

– Verbally

– Physically

– Emotionally

– Spiritually

• HOW?– PPA

– SupportiveCommunication

• SupportiveCommunication– Empathy

– Validation

– Exploration

– Acknowledgement

• Move Forward– New words

– New place

– New Activity/Focus

Top TEN!Unmet Physical Needs

• Hungry or Thirsty

• Tired or Over-energized

• Elimination – needto/did

• Temperature – toohot/cold

• IN PAIN!!!– Mouth

– Joints - skeleton

– Insides – gut/heart/bowels

– Creases or folds

Unmet Emotional Needs

• Angry

• Sad

• Lonely

• Scared

• BORED

To Connect EMOTIONALLY:• SEND visual signal of connection

– LOOK CONCERNED

• SEND a verbal signal of connection

– USE the RIGHT TONE OF VOICE

• SEND a physical signal of connection

– Give a light SQUEEZE or SANDWICH thehand

– Offer a OPEN PALM on Shoulder or Back

– Offer a HUG – IF the person is Seekingmore contact

Use Supportive Strategies

• Repeat a few oftheir WORDS with a? at the end

• LISTEN…

• Then –

– Offer EMPATHY• “Sounds like…

• “Seems like…

• “Looks like…

• LISTEN…

• AVOIDConfrontationalQUESTIONS…

• Use just a FEWwords

• Go SLOW

• Use EXAMPLES…

• Fill in the BLANK…

• LISTEN!!!

More Supportive Strategies…

• Validate emotions

– EARLY – reflect - “It’s really (label emotion) to have

this happen” or “I’m sorry this is happening to you”

– MIDWAY – repeat their words (withemotion)

• LISTEN for added INFO, IDEAS, THOUGHTS

• EXPLORE the new info BY WATCHING & LISTENING

– LATE – CHECK OUT the WHOLE Body –• Face, posture, movement, gestures, touching, looking

• Look for NEED under the words or actions

Once Connected &Communicating…

• Move FORWARD

– ADD NewWords…

– Move to a NewPlace – Location

– Add a NEWActivity

• EARLY – Redirection

– Same subject

– Different focus

• LATER – Distraction

– Different subject

– Unrelated BUTenjoyed

For ALL Efforts

• If what you are trying is NOT working…

• STOP

• Back off

• THINK IT THROUGH… THEN

• Re-approach –

• Try something slightly different

So… What is Dementia?

• It changes everything over time

• It is NOT something the person cancontrol

• It is NOT always the same for everyperson

• It is NOT a mental illness

• It is real

• It is hard at times

Gems Approach to Changes

Rationale

• 3 systems – all use numbers

• Each has value – together confusing

• People are not numbers

• Until we begin to the see the beautyand value in what the person is at thispoint in time – we will never care forthem as we should

• Gems are precious and unique –common language and characteristics

Gems

• Based on Allen Cognitive Levels –

– Cognitive Disability Theory – OT based

• Creates a common language & approach toproviding –

– Environmental support

– Caregiver support & cueing strategies

– Setting expectations regarding retained abilitiesand lost skills

– Promotes graded task modification for success

Now for the 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

Dementia can be treated

• With knowledge

• With skill building

• With commitment

• With flexibility

• With practice

• With support

• With compassion