Caregiving Gems

WithTeepa Snow,

MS,OTR/L,FAOTA

BeliefsPeople with Dementia

are doing the BEST they canWe must learn to DANCE with our partnerWe are a KEY to make life WORTH living

What we choose to do MATTERSWe can change the WORLD with help

We must be willing to CHANGE ourselvesWe must be willing to STOP & BACK OFF

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How Can We Become Better Care Partners?Let go of the past to be in the

MOMENTGo with their FLOW

Be willing to try something newBe willing to learn something

differentBe willing to see it through

another’s eyesBe willing to fail & try again 3

Teepa Snow, MS,OTR/L,FAOTAcreated the GEMS model for better understanding of Dementia Stages

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OverviewSapphires: True Blue-Slower but “Fine”Diamonds: Repeats & Routines, CuttingEmeralds: Going-Time Travel-”Where…?”Ambers: In the moment-sensationsRubies: Stop or Go-no fine controlPearls: Hidden in a Shell-Immobile

SapphiresUs on a good day

Clear & true to themselvesMay feel “blue” over

changesSome are “stars” and some

are notThey can choose

SapphiresCan connect the dots-make

contractsMay have other health issues that

effect behaviorsRecognize life experiences, achievements and values in

interactionsCan follow written info & hold on

to itWill still need us to work with

themCan typically CHOOSE their

behaviors

Sapphires: Don’tsRushing

Telling instead of askingBeing “Bossy”

Ignoring their feelingsMaking them feel

unimportant

Sapphires: DosSummarize conversations

Slow downBe aware of their changes

Be clear in vision/speech/cuesWrite notes down

Use prompters and remindersValidate and empathize

Ask, not demand

DiamondsStill clear

Sharp-can cutHard-Rigid-Inflexible

Many facetsCan really shine

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DiamondsKnow Who’s in Charge – Respect

AuthorityCan do OLD habits & routines

Become more territorial OR less aware of boundaries

Like the familiar – FIGHT CHANGECan pull it together to make you look

badKnow how to push your buttons

Want to keep roles the sameTell the same stories ask the same ?

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DiamondsAre joiners or loners

Use old routines and habits

Control important Roles & territory

Real? Fake? Hard to be sure12

DiamondsUses old routines & old habits to functionCan complete personal care in familiar spaceFollows simple prompted schedules-mostlyMisplaces things and can’t find themResents takeover or bossinessNotices others’ misbehavior & mistakesTerritorial-refusalsVaries in lack of own self awareness

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Diamonds: InterestsWhat they feel competent at

What they enjoy and who they likeWhat would make them feel valuedWhere they feel comfortable but stimulatedWhat is familiar but intriguingWhat is logical and consistent with historic values and beliefWho’s the boss?

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Diamonds: IssuesADLS

$$ managementTransportation/drivingCookingHome maintenance/safetyCaring for someone elsePet maintenanceMedication administration

Unfamiliar settings or situationsHospital stayHousing changeChange in familyChange in support systemMD visitsNew diagnosisTravel/vacation

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Verbal Cues1. Knock before entering2. Use “Sir” and “Ma'am", be respectful3. Ask permission to do things in the

room4. Offer positive comments5. Issue invitations, not orders6. Ask for help or input7. Frame as a RULE for everyone8. Acknowledge their skill, ask for their

support or understanding- a favor

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Verbal CuesWatch how you talk

How you say itWhat you say

How you respond

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Tactile Cues1. Hand shake greetings2. Return of friendly affection,

touches3. Responsive hugs4. Hand-under-hand comforting5. Back rubs-with permission6. Hand and foot massages7. Pampering (getting used to us

touching and doing)

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Ways to say “I’m Sorry”

1. “I’m sorry, I was trying to help", can add “I didn’t mean to hurt you” or “I didn’t mean to startle you”

2. “I'm sorry I made you (identify the feeling) angry/sad/frustrated/upset”

3. “I'm sorry the way I acted/spoke to you/behaved made you feel less/stupid/incompetent..you are one of the smartest/most competent people I know”

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Ways to say “I’m Sorry”

4. “I am sorry I treated you like a child, I had no business doing that.”5. “I'm sorry that happened! That should not be happening..” validate they have a right to feel the way they feel, think what they think-NO correcting)6. “I’m sorry this is HARD!” show some emotion, use this when the person is clearly struggling and frustrated with themselves and their losses OR when you are struggling with how to be helpful, make a connection or figure out what they want/need…Let them know you GET it!

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What HelpsApologizeBe friendly, not bossy-leader to leader“let’s try”-temporaryShare responsibility-not take overUse as many old habits as possibleGive up the need to be rightGo with the flowGive other “job” when taking away another

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Be Prepared for RepeatsFor repeated questions or requests

Don’t share so earlyBe careful about emotional informationMake sure you are connected to reasonRepeat a few of their words in a ???Answer their question THEN

go to new words (with enthusiasm!)a new placeadd a new activity(possibly related)

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For Old StoriesUse “Tell me about it..”

to accept the storyto reduce “paranoia-like” thinking

Store them for the futurewrite them downshare them with othersyou will possibly need them for supportive communication later

Learn several-prompt for “switch up”23

Bad Habits to BreakSaying “Don’t you remember?”

Not recognizing or accepting differencesTrying to force changes in roles or responsibilitiesTrying to take over completelyTaking responsibility for saying “No”Accepting things at face valueArguing

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Emeralds

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Changing colorNot as Clear or Sharp - VagueGood to Go – Need to ‘DO’

Flaws are Hidden

Time Traveling

Emeralds

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Think they are FINEGet emotional quicklyMake mistakes – don’t

realize itDo over and over OR Skip

completelyAsk – “What? Where?

When?”Like choices

Get lost in past life, past places, past roles

Need help, DON’T know it or like it!

Emeralds

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2 kind of DoingDoers or SupervisorsDoes what is seen-misses what is notMust be in control

Not able to do it RIGHTDoes tasks over and

over OR not at all

Emeralds Interests

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Doing familiar tasksDoing visible tasks

Historic tasks and people and places

Engaging with or helping others

Finding important people or things

Having a “job” or “purpose”Being an “adult”

Getting finished and doing something else

Emeralds Issues

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Doesn't do care routinely-thinks did

Makes mistakes in sequence-unaware

Repeats some care routines over & over

Resists or refuses helpGets lost-can’t find where to do

careLimited awareness of ‘real

needs’Hunger,thirst,voiding,bathing/

groomingHas other ‘stuff’to do

Emeralds Issues

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Afternoon or Evening: "Got to go home”

Daytime: “Got to go to work”Looking for people/places from

the pastLosing important things-thinking

others stole/took themDoing private things in public

placesHaving emotional meltdownsTreating strangers like friends

and visa versa

Cues in Environment

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Overall look (friendly, fun, familiar, forgiving)Surfaces to work/do things onPlaces to sit (paired chairs)Set up props (objects that ‘say” what to do)Highlighted areas

(light, color contrast, clutter reduction, organized)Hidden-what is NOT to be done, what is a already done, what ‘triggers’ distress

Cues in You!

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Facial expressionfriendlyconcerned

Gesturesinvite with gestures and

your faceindicate next item to use or

optionsOffer itemsOffer an item in correct orientationPresent two to pick from

Verbal Cues

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Tone of voicefriendlyinterestedconcerned

Reduce and focused wordsUse preferred name for attentionMatch words with gestures or offeringListen and use their words to connect

When Distressed

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Use PPA-let them come to you if possibleListen-get connected to where they areUse empathetic commentsListen for key wordsGo with the flow-don’t push for changeThen use redirection, NOT distractionMatch your touch to their preferencesHand under Hand firstBack rub-if interestedHug-show firstIncrease space and distance if cuedBACK OFF if not working

Physical Cues

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Limit this form of helpingMatch it with a visual and verbal cue comboOffer objects-don’t put hands onShare the task-give them something to do while you do your partDo it with/to someone else first, then approach them

How to Help

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Learn about “SO WHAT”…is it worth it?Pick your battlesProvide subtle supervision for careProvide visual prompts to do

-gestures,objects,set-up,showHide visual cues to stop/preventUse normal, humor, friendliness, supportDon’t be afraid to laugh WITH but not AT them and poke fun at your own mistakesRespect values and beliefsAvoid the negative

Connecting

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Identify a common interestSay something nice about the person or their placeShare something about yourself and encourage the person to share backFollow their lead-listen activelyUse some of their words to keep the flow goingRemember it’s the FIRST TIME-expect repeatsUse the phrase “tell me about it..”

Don'ts

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Don’t try to control the flowgive up reality orientation

and BIG liesdo not correct errorsOffer info IF ASKED

Don’t try to stop the flowdon’t reject topicsdon’t try to distract until

you are well connectedkeep visual cues positive

What Not to Do

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DO NOT point out errors/focus on wrongDO NOT offer physical assist 1st

DO NOT offer “let me HELP you”DO NOT go back and “fix it”DO NOT argue about realityDO NOT treat them like childrenDO NOT REACT-

remember to RESPOND

Habits to Break

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Noticing and pointing out errors like a strict parentTelling , not asking: “You need to..”Too little or too much talking, showing, touchingTrying to take over-offering “help”Putting hands on- “fussing”Reality orientation or lyingTrying to use “distraction”

AmbersAmber Alert

Caution!Caught in a

momentAll about Sensation

Explorers

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AmbersPrivate & Quiet OR Public & NoisyAll about sensory tolerance and needsTouching-Tasting-Handling-Exploring-Attraction-AvoidanceOver-stimulated/Under-stimulatedNo safety awarenessEgo centric

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AmbersLots of touching, handling, mouthing, manipulatingFocus on fingers and mouthGet into thingsAll about sensationInvade space of othersDo what they likeAvoid what they do not

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Ambers’ IssuesFiddle, mess, touch, taste,

dig, tear, fold…..Move toward action and noise OR awaySensory toleranceSensory needMouth, fingers, feet, genitaliaCan’t figure it out… react physically

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Ambers’ IssuesGetting into stuff-taking stuff

Bothering othersNot being able to make needs knownNot understanding what caregivers are doingNot liking being helped/touched/handledNot liking showers or bathsRepetition of sounds/words/actions 45

Ambers’ InterestsThings to mess with (may be

people)Places to explore

Stuff to take,eat,handle,move..Visually interesting thingsPeople that look or sound

interesting or places that quiet and private

Textures,shapes,movement,colors,numbers,stacking,folding,s

orting.. 46

Visual Cues that HelpAutomatic social greeting

signalsLighted work surfaces with strong propsDemonstrations-work along sideModel the actionsDo the action one time, then offer the propShow 1 step at a timeShow a NEW item, then cover the old

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Verbal Cues that HelpCall name

Use simple noun, verb, or noun + verb• “cookie?”• “sit down”• “let’s go” (with gesture)Give simple, positive feedbackListen for their words, then:

use a few and leave a blank at the end of the sentence

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Physical Cues that HelpShow the motion or action

wantedTouch the body part of interestPosition the prop for use-light touchShow the motion on yourselfUse hand under hand guidanceOffer the prop once started-encourage their use of the item

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How to HelpProvide step by step guidance and helpGive demonstrations-show!Hand under hand guidance after a few repetitions-offer something to handle, manipulate,touch,gatherLimit talking, noise,touch,other activitiesSUBSTITUTE, don’t SUBTRACT 50

Make an Emotional ConnectionUse props or objects

Consider parallel engagement at firstLook over the “thing”, be interested, share it over..Talk less, wait longer, take turns,COVER don’t confront when you aren’t getting the words, enjoy the exchangeUse automatic speech and social patterns to start interactionsKeep it short-emphasize the VISUAL

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Bad Helper Habits to BreakTalking too much/showing too littleBeing loud and forceful-treating like a childKeep on pushing when they say “enough”Doing for NOT withStripping the environmentLeaving too much in the environmentGetting in intimate spaceOver or under stimulation

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RubiesHidden Depths

Red Light on Fine MotorComprehension &

Speech HaltCoordination FaltersWake-Sleep Patterns

are Gone

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Rubies

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Fine motor stopsHard to stop and hard to get goingLimited visual awarenessOne direction – forward onlyCan’t figure out details – but do copy usSLOW to changeOn the go or full stopUse music and rhythm

RubiesBig movements: walking, rolling, rockingHand actions-not fingersTends toward movement unless ‘asleep’Follows gross motor and big gestures for actionsLimited visual awarenessMajor sensory changesMajor movement skill lossesFine motor skills lost-mouth and hands

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Ruby InterestsWalking a routine path

Going forwardWatching others-checking them outBeing close or having spaceThings to pick up, hold, carry, push, wipe,rub, grip, squeeze, pinch, slapThings to chew on, suck on, grindRhythmic movements and actions

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Ruby Care IssuesSafe mobility: fatigue, wandering &

fallsIntake: amount and safetyHydration: interest, amount, safetyRest: time and place, night time wakingShadowing others-invading placesNot staying/settling for mealsReactions to hands-on care-sensationIdentifying and meeting needs

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Ruby Care IssuesContractures

Skin well-being: bruises, tears, rashesPressure or frictionInfections: UTI, yeast, URI, PNASwallowingcirculation

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Visual Cues that HelpDemonstrate what you want

Give big movements to copyMove slowly and with rhythmPresent cues in central visual field about 12-18” outHold things still-allow explorationOffer your handSmile while offering support

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Verbal Cues that HelpCall name to get attention-at 6 feet

outUse ‘song’ to connectGive 1-3 words onlyCombine verbal direction with gesture or demoGive 1 action cue at a timeMatch tone/inflection to intentGive positive ‘strokes’ with attempts

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Physical Cues that Help

Hand under handTouch body part to be moved or usedPlace hand/foot, then gestureOffer comfort touch as desired before attempting taskBack rubs:

flat and slow to calmfinger tips and quick circles to

awake61

How to HelpSLOW yourself DOWNHand under handMove with first, then guideLearn about patterns of needsUse music and rhythms to help get or stop movementUse touch with careCombine cueing and do SLOW

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Bad Helper Habits to Break

Touching too quickly, startlingLeaning in- intimate space invasionTalking too loudlyBaby talkingNot talking at allNot showing understandingTrying to understand what is said by being confrontational

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PearlsHidden in a Shell

Still & QuietEasily Lost

Beautiful - LayeredUnable to Move – Hard

to ConnectPrimitive Reflexes on

the Outside64

PearlsThe end of the journey is nearMultiple systems are failingConnections between the physical and sensory world are less strongWe are often the bridgeMany Pearls need our permission to go

they are still our moms, dads, spouses, friends

They will go in their own timeIF we don’t try to change what is

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PearlsImmobile, can’t get startedBed or chair boundFrequently falls to side or forwardHas more time asleep or unawareHas many ‘primitive’ reflexes presentStartles easilyMay cry out or mumble constantlyIncreases vocalizations with distressDifficult to calmKnows familiar from unfamiliarTouch and voice make a difference in behaviors

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Typical PositioningConstant muscle activity causes contractures – shortening-can’t relaxStronger muscles cause typical fetal positioningPulling against contracture is painfulShortened muscles cause some areas to• not get air, become raw/irritated• rub/press other body parts• Get too much pressure, can’t

move off

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Primitive Reflexes

Startle reflexsudden movement causes

total body motionGrasp reflex

touch palm, grips hard and can’t releaseSucking reflex

sucks on anything near mouthRooting reflex

turns toward any facial touch and tries to eat

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Primitive ReflexesBite reflexany touch in mouth causes bite down

Tongue thrustanything in mouth causes

lounge to push forward and outWithdrawal-rebound

pull away from stretchGag reflex

any touch to tongue causes gag

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Pearl Care IssuesNot interacting much

Crying out-can’t make needs knownSkin and hygiene problemsWeight lossReflexes make care more challengingRepeated infectionsNot eating or drinkingNot able to sit up safely

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Pearl InterestsInternal cuesPleasant and familiar sounds and voicesWarmth and comfortSoft texturesPleasant smells“good” tastesSmooth and slow movementJust right touch and feel

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Visual Cues to HelpGet into supportive position

Place your face in the central field of visionMake sure light comes from behind the person into your faceBring up lights carefullyMove slowly so they can follow youPlace items to be used in central field 72

Verbal Cues to HelpKeep your voice deep and calm

Put rhythm in your voiceTell what you are doing and what is happening while you give careReflect emotions you think you seeOffer positive comments and familiar phrases as you offer careQuiet down, if signaled to do so73

Use firm but gentle palm pressure at joints to make contactAlways try to maintain contact with 1 hand while working with the otherOnce physically connected, keep itUse flats of fingers and palms for careAlways use hand under hand when doing something intense

Touch Cues to Help

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How to HelpHand under hand help and care or hand under forearm if hand/arm movement is poorCheck for reflexes – modify help and approach to match needsGO SLOWUse calm, rhythmic movements and voiceCome in from back of extremities to cleanStabilize with one hand and work with the other 75

How to HelpGather all supplies for the task before getting startedIncrease warmth of the room for bathingUse warm towels and light weight blanketsUse circular, rotational movements to relax joints for careProvide skin care for fragile and dry skin 76

Bad Helper Habits to BreakHurry-get it done quicklyDon’t talk to-talk over or aboutDon’t check for primitive reflexes prior to helpingUse both hands to give careClean from the front-use prying motionsFocus on tasks, not the relationshipForget to look for the Pearl 77

Teepa Snow,MS,OTR/L,FAOTA

Caregiver Gems