Activities and Programming for MenTo Connect with Ambers • Make an Emotional Connection – Use props or objects – Consider PARALLEL engagement at first • Look at the ‘thing’,

Activities and Programming forMen with Dementia

What’s Special About Men Living inResidential Settings

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

Men are DifferentThey Have Special Needs!

• SURROUNDED by WOMEN!

• ‘women free’ zones

• may or may not LIKE women

• competitive

• Life experience matters

Men go to WORK!

• Our communities look like ‘homes’

• ‘work place’, a ‘hang out place’, OR a ‘guyplace’

• Men are different in a ‘work’ setting

• Men may be seeking ‘work’ - unsettled

• Leisure locations instead…

Interacting Differences

• Logical – Head First thinkers

• More trouble using language to communicateneeds

• Men are less likely to talk about or discussfeelings and emotions

• Men like specifics and routines and plans thatare concrete and clear – surprises arefrequently not welcome or fun – they like toknow what is going to happen ahead of time

Men in CONTROL

• More difficulty with the transition intocommunal living

• More likely forced

• Resist engagement in activity programs todemonstrate their ability to ‘control’something in their life

How Men Look Determines Behavior

• Business dress or uniforms – meet and greet,be social, get on the job

• Casual dress – meet with friends, go to sportsevents, do work with others, vacations

• Sloppy, home dress - do what I want, when Iwant, only if I want – hanging out time

Props Help

• Drinks and snacks

• Objects or items to look at and handle

• Pictures, newspapers, or books with pictures

• A game, program, or show

• A presenter or speaker with ‘handouts andslides’

Men & Groups

– Civic or Club Groups – Rotary Club, Ruritans, Civitans,Lions, Elks, Eagles, Moose

– Military clubs or groups – VFW, Branches of Service– Work Organizations – organizations organized and focused

on work/jobs/careers– Hobby or Collectors Groups – stamps, coins, tools,

antiques, paintings, pipes, cigars….– Sport Team Clubs/Organizations – baseball, football,

basketball, hockey, golf, tennis, boxing…– Political Organizations – debates, discussions, rallies -

Democrats, Republicans, Independents - Local, State,National

– Other groups?

Men & Sports

• Doers & Watchers

• Buddies – Leisure - Just for FUN

• Competitors – Scoring important & rules

• May run two or three different groups

Men & Sports

• Billiards or shooting Pool sessions• Golf – Putting or Driving Ranges• Shuffleboard• Bocce• Fishing – fresh or salt water• Softball/Baseball• Tennis• Swimming• Running or Walking• Weight Lifting or Gym Workouts• Hiking

NEW OPTIONS to CONSIDER forDOING:

• Tai Chi

• Yoga

• Chair Exercise

• Aerobics

For Watchers…

• Those who have enjoyed WATCHING maybenefit from ‘get togethers’ where the focus ison a Sports Event or Championship or ‘FINALS’or Tournament

• They may prefer this to be ‘without women’ orin a ‘bar’ or ‘clubhouse’ format

Watcher Options

• World Series – Baseball• Master’s or other major Golf Tournaments• NBA, NHL, NFL Play-Offs• Super Bowl or Bowl Games - professional or

college football• March Madness – College basketball• Auto Racing – Indy 500, Nascar….• Wimbledon or other tennis competitions• Olympics• Stanley Cup Finals – Hockey

Other Sport Options

• Local kids games

• Local minor league, college, or high schoolgames

• Group Members share a ‘history’ of sportsexperiences – old team pictures, old uniforms,old sports items, newspaper clippings,school/college yearbooks, community orworkplace team sport events…

• Family members may help

Games and Men

• Table games – checkers, chess, poker, bridge,gin rummy, backgammon…

• Cognitive activities – group crosswords,hangman, trivia, name that tune, scrabble,charades…

• Sports

• Computer or video games

• Championships or contests

Men & Music

• Many men have active in choirs or othermusical groups

• Many are good dancers, or at least enjoydancing

• Many have played instruments and may stillhave that skill or at least some of it

• Some men may be interested in trying outnew musical interests

Men for Formal Faith Communities

• Bible study or Torah discussion groups

• Help with organizing or setting up for services

• Help with passing out or collecting materials

• Readers or singers

Men Need Work

• Recycling Crew – collect and recycle throughoutthe community – cans, paper, newspapers,plastic…

• Mail Delivery – Calendar Delivery – PostingMenus & Announcements

• Greeter – Ambassador• Building Inspectors – Bring selected men onto a

‘team’ that checks the building and grounds forhousekeeping and maintenance issues

• Gardeners Group – Grounds Crew

Special Events

• Something to watch or look at –

• A common experience to comment on:

• A game or event

• Remembering and Sharing Groups –

• Men’s Cooking – BBQ – Outdoor meals

• Outings – fishing, boating, rides out

• Travel Discussions –

• Genealogy & family trees

Ideas from You

What to Do in the Later Stagesof Dementia

Creating Meaning for Ambers,Rubies, & Pearls

Teepa Snow

What Does It Take To Make aGreat Activity Program for Later Stages?

Know eachPERSON!

UnderstandACTIVITIES!

Make & Use aSCHEDULE!

Build staffSKILLS!

Manage theENVIRONMENT!

Resources tosucceed

Sensory Processing andDementia

In Later Stages It Matters

Humans have FIVE ways ofgetting information from the

world around them

What we:

See

Hear

Feel

Smell

Taste

Two Major Categories

Protective

Discriminatory

Two Categories

Protective

• FAST

• Reflexive

• Try to keep you safe

• Autonomic – reflexive

• BIG!

• Strong Emotions!!!

• Spinal & Primitive

• Flight-Fight-Flight

Discriminatory

• Slower

• Brain driven

• Exploring and figuringout

• Details & differences

• Focused

• Ignore big world toexperience immediate

• Want more or want less

With Dementia

Protective

• Less able to pick up on‘danger’ signals/cues

• More likely to over-reactto ‘normal’ range

• To non-demented seems‘unpredictable’

• BUT – it’s the newpredictable – set point

• May move toward‘dangerous’ versus awayfrom it

Discriminatory• Either hyper-focused OR

un-observant• From multi-modal

awareness to singlecharacteristic attention

• Shortened task attentionspan

• Variable sensoryattention

• Atypical focus on acharacteristic – edges ofthe frame versus thepicture

With Dementia All Senses areAffected:

• Miss information

• Mis-understand information

• Over-react to information

• Under-react to information

• Get stuck on a sensation

• Can’t stand a sensation

• Variable abilities

• Can’t adjust or adapt to sensation

With DementiaIt’s All About Finding the

BALANCE!!!!

Balance…

Like – Good for you

Want – Tolerate

Pleasant - Unpleasant

Comforting - Annoying

Stimulating - Frightening

Calming - Boring

Nothing - Too much

Familiar - Novel – New

Sensation

A common stimulus

That causes an Individualexperience

The Stimulus

• Single mode versus multi-modal

• Constant versus intermittent

• Subtle versus EXTREME

• Still versus moving

• Gradual versus sudden

• Sought out versus given

• Controlled by me versus by you

• Expected versus unexpected

Vision Changes

Protective

• Peripheral awareness

• Visual field

• Depth perception

• Light-darkaccommodation

• Tracking

• Blink

Discriminatory

• Organized scanning

• Saccadic eye movements

• Color discrimination

• Figure ground perception

• Near-far accommodation

• Near acuity

• Night vision

• Object recognition

• Facial recognition

Hearing-ComprehensionChanges

Protective

• Direction

• Emergency signals

• Alertingcommunication

Discriminatory

• Localization

• Comprehension

• Sound recognition

• Voice recognition

• Foreground-background

• Tracking

• Following a conversation

• Interpreting meaning

• Multi-step information

Touch & Movement Changes

• This one is both complicated andIMPORTANT!!!!

• Sensation, Processing, Reactions ORResponses Happen FAST!!! Almostautomatic – due to habits andprocedural memories – looping oncestarted

• Active versus passive - different

Touch …

Movement

• Balance

• Coordination

• Speed

• Accuracy

• Strength

• Bi-lateral & uni-lateral

• Gross motor

• Fine motor

• Reflexes

Sensations

• Pressure

• Temperature

• Moving touch

• Texture

• Shapes

Touch

Protective

• Extreme Temperature

• Sharp – Cutting

• High velocity impact

• Sustained pressure

• Friction

Discriminatory

• Variation in temperature

• Variable textures

• Massage

• Wet/dry

• Manipulation

• Grasp

Movement

Protective

• Balance against gravity

• Block incoming

• Avoid contact

• Catch balance

• Maintain upright

Discriminatory

• Voluntary movementsto meet goals

• Tool use

• Object manipulation

• Construction

Olfactory – Smell Changes

Protective

• Limited– Smoke

– Chemicals or gas

– Spoiled food

– Body odor

– Urine or feces

Discriminatory

• Emotional memories

• Emotional reaction

• Pleasant-unpleasant

• Smell identification

• Stimulate hunger orthirst

• Stimulate nausea

• Localization & tracking

Gustatory – Taste Changes

• Less able to pick up on sweet and salty

SO – they want MORE

• Still keep bitter and sour

SO – they may not like things they used to

SPECIAL EVENTS

Things may ‘taste’ wrong

May order something then refuse to eat

Create a Sensory PreferenceList for YOU… for the Person

• Visual likes – stimulating & calming

• Auditory likes – stimulating & calming

• Touch likes – stimulating & calming

• Movement likes – stimulating & calming

• Smell likes – stimulating & calming

• Taste likes – stimulating & calming

Create a SensoryINTOLERANCE List FOR

YOU… for the Person

• Visual Irritants

• Auditory Irritants

• Touch Irritants

• Movement Irritants

• Smell Irritants

• Taste Irritants

Gem Changes

• Sapphires – you and me as is

• Diamonds – more vocal and rigid

• Emerald - visual and auditory MOST

• Amber – ALL SENSES critical

• Ruby – Touch, movement, personal &intimate space awareness

• Pearl – Touch, Movement – intimatespace KEY!

Ambers

Amber Alert

Caution!

Caught in a moment

All about Sensation

Explorers

Ambers

Private & Quiet OR Public & Noisy

All About Sensory Tolerance & Needs

Touching - Tasting – Handling –Exploring

Attraction – Avoidance

Over-stimulated – Under-stimulated

No safety awareness

Ego-centric

Amber

• LOTS of touching, handling, mouthing,manipulating

• Focus on fingers and mouth

• Get into things

• All about sensation….

• Invade space of others

• Do what they like

• AVOID what they do NOT

Amber Interests

• Things to mess with (may be people)

• Places to explore

• Stuff to take, eat, handle, move…

• Visually interesting things

• People who look or sound interestingOR places that are quiet and private

• Textures, shapes, movement, colors,numbers, stacking, folding, sorting…

Amber Issues

• Getting into stuff – taking stuff

• Bothering others

• Not able make needs known

• Not understanding what caregivers aredoing

• Not liking beinghelped/touched/handled

• Not like showers or baths

• Repetition of sounds/words/actions

Visual Cues that Help

• Automatic social greeting signals

• Lighted work surfaces with strongprops

• Demonstrations – work along side

• Model the actions

• Do the action one time, then offer theprop

• Show one step at a time

• Show a NEW item, then cover the old

Verbal Cues that Help

• Call name

• Use simple noun, verb, or noun + verb

– “Cookie?”

– “Sit down”

– “Let’s go” (with gesture)

• Give simple positive feedback

• Listen for their words, then

– use a few and leave a blank at the end ofthe sentence

Physical Cues that Help

• Show the motion or action wanted

• Touch the body part of interest

• Position the prop for use – light touch

• Show the motion on yourself

• Use hand under hand guidance

• Offer the prop once started –encourage their use of the item

Hand-Under-HandAssistance

How to Help

• Provide step-by-step guidance & help

• Give demonstration – show

• Hand-under-hand guidance after a fewrepetitions, uses utensils (not always well)

• Offer something to handle, manipulate,touch, gather

• Limit talking, noise, touch, other activities

• SUBSTITUTE don’t SUBTRACT

To Connect with Ambers

• Make an Emotional Connection– Use props or objects

– Consider PARALLEL engagement at first

• Look at the ‘thing’, be interested, share itover….

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

– Use automatic speech and social patterns tostart interactions

– Keep it short – Emphasize the VISUAL

BAD Helper Habits to Break!

• Talking too much, showing too little

• Keep on pushing

• Doing for NOT with

• Stripping the environment

• Leaving too much in the environment

• Getting in intimate space

• Over or under stimulating

• Getting loud and forceful

Rubies

Hidden Depths

Red Light on Fine Motor

Comprehension & Speech Halt

Coordination Falters

Wake-Sleep Patterns are Gone

Rubies

Balance & coordination

Eating & drinking

Wake time & sleep time

Ruby

• Big movements – walking, rolling, rocking

• Hand actions – not fingers

• Tends toward movement unless ‘asleep’

• Follows gross demonstration & biggestures for actions

• Limited visual awareness

• Major sensory changes

• Major movement skill loses

• Fine motor skill lost – mouth & hands

Ruby Interests

• Walking a routine path

• Going forward

• Watching others – checking them out

• Being close or having space

• Things to pick up, hold, carry, push,wipe, rub, grip, squeeze, pinch, slap

• Things to chew on, suck on, grind

• Rhythmic movements and actions

Ruby Care Issues• Safe mobility – fatigue, wandering, & falls

• Intake – amount and safety

• Hydration – interest, amount, safety

• Rest time & place – night time waking

• Shadowing others – invading places

• Not staying – not settling for meals

• Reactions to hands on care – sensation

• Identifying & meeting needs

More Ruby Issues

• Contractures

• Skin well being – bruises, tears, rashes

• Pressure or friction

• Infections – UTI, yeast, URI,pneumonias

• Swallowing

• Circulation


• Demonstrate what you want

• Give big movements to copy

• Move slowly & with rhythm

• Present cues in central visual fieldabout 12-18 inches out

• Hold things still – allow exploration

• Offer your hand

• Smile while offering support


• Call name to get attention – at 6’ out

• Use ‘song’ to connect

• Give 1-3 words only

• Combine verbal direction with gestureor demo

• Give one ‘action’ cue at a time

• Match tone/inflection to intent

• Give positive ‘Strokes’ with attempts


• Hand-under-hand

• Touch body part to be moved or used

• Place hand/foot then gesture

• Offer comfort touch as desired beforetask attempt

• Back rubs –

– Flat and slow – to calm

– Finger tips and quick circles – to awake

How to Help

• SLOW yourself DOWN

• Hand under hand

• Move with first – then guide

• Learn about patterns of ‘needs’

• Use music and rhythms – help get orstop movement

• Use touch with care

• Combine cuing & do SLOW


• Touching too quickly – startling

• Leaning in – intimate space invasion

• Talking too loudly

• ‘Baby-talking’

• Not talking at all

• Not showing by demonstrating

• Trying to understand what is said, bybeing confrontational

Pearls

Hidden in a Shell

Still & Quiet

Easily Lost

Beautiful - Layered

Unable to Move – Hard to Connect

Primitive Reflexes on the Outside

Pearls

• The end of the journey is near

• Multiple systems are failing

• Connections between the physical andsensory world are less strong

• We are often the bridge – the connection

• Many Pearls need our permission to go –

– They are still our moms, dads, spouses,friends

– They will go in their own time

– IF we don’t try to change what is

Pearl

• Immobile – can’t get started

• Bed or chair bound – frequently falls to side orforward

• Has more time asleep or unaware

• Has many ‘primitive’ reflexes present -Startles easily

• May cry out or mumble ‘constantly’

• Increases vocalizations with distress

• Difficult to calm

• Knows familiar from unfamiliar

• Touch and voice make a difference in behaviors

Pearl Interests

• Internal cues

• Pleasant and familiar sounds & voices

• Warmth and comfort

• Soft textures

• Pleasant smells

• ‘Good’ tastes

• Smooth and slow movement

• Just right touch and feel

Primitive Reflexes toConsider

• Startle reflex –

– Sudden movement causes total body motion

• Grasp reflex–

– touch palm – grips hard can’t release

• Sucking reflex –

– sucks on anything near mouth

• Rooting reflex –

– Turns toward any facial touch and tries toeat

More Reflexes

• Bite reflex

– Any touch in mouth causes bite down

• Tongue thrust

– Anything in mouth causes tongue to pushforward and out

• Withdrawal – rebound

– Pull away from stretch

• Gag reflex –

– Any touch to tongue causes gag

Typical Positioning – Why?

• Constant muscle activity causes‘contractures’ – shortening – can’t relax

• Stronger muscles cause typical ‘fetal’positioning

• Pulling against contractures is painful

• Shortened muscles cause some areas to:

– Not get air – become ‘raw’ or ‘irritated’

– Rub or press against other body parts

– Get too much pressure – can’t move off

Pearl Care Issues

• Not interacting much

• Crying out – can’t make needs known

• Skin & hygiene problems

• Weight loss

• Reflexes make care challenging

• Repeated infections

• Not eating or drinking

• Not able to sit up safely

Visual Cues to Help

• Get into supportive position

• Place your face in the central field ofvision

• Make sure light comes from behind theperson – into your face

• Bring up lights carefully

• Move slowly so they can follow you

• Place items to be used in central field

Verbal Cues to Help

• Keep your voice deep & calm

• Put rhythm in your voice

• Tell what you are doing and what ishappening while you give care

• Reflect emotions you think you see

• Offer positive comments & familiarphrases as you offer care

• Quiet down, if signaled to do so

Touch Cues to Help

• Use firm, but gentle palm pressure atjoints to make contact

• Always try to maintain contact withone hand while working with the other

• Once physically connected keep it

• Use flats of fingers and palms for care

• Always use hand under hand whendoing something ‘intense’

How to Help

• Hand under hand help & care – or hand onforearm, if hand/arm movement is poor

• Check for reflexes – modify help & approach tomatch needs

• GO SLOW

• Use calm, rhythmic movements & voice

• Come in from back of extremities to clean

• Stabilize with one hand & work with other

How to Help?

• Gather all supplies for the task beforegetting started

• Increase warmth of the room for bathing

• Use warm towels & light weight blankets

• GO SLOW

• Use circular, rotational movements torelax joints for care

• Provide skin care – fragile & dry skin

BAD Help Habits to BREAK

• Hurry - Get it done quickly

• Don’t talk to – talk over or about

• Don’t check for primitive reflexes prior tohelping

• Use both hands to give care

• Clean from the front – use prying motions

• Focus on tasks not the relationship

• Forget to look for the Pearl

Examples of MeaningfulActivities

•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

Moderate Disease - Amber

• LOTS of touching, handling, mouthing,manipulating

• Focus on fingers and mouth

• Get into things

• All about sensation….

• Invade space of others

• Do what they like AVOID what they do NOT

How to Help

• Provide step-by-step guidance & help

• Give demonstration – show

• Hand-under-hand guidance after a fewrepetitions, uses utensils (not always well)

• Offer something to handle, manipulate, touch,gather

• Limit talking, noise, touch, other activities

• SUBSTITUTE don’t SUBTRACT

Hand-Under-HandAssistance

Level 2 - Ruby

• Big movements – walking, rolling, rocking

• Hand actions – not fingers

• Tends toward movement unless ‘asleep’

• Follows gross demonstration & big gestures foractions

• Limited visual awareness

• Major sensory changes

• Major movement skill loses

• Fine motor skill lost – mouth & hands

How to Help

• Hand under hand



• Gradual transitions - go to stop

• Use music and rhythms – help get or stopmovement



Level 1 - Pearl

• Immobile – can’t get started

• Bed or chair bound

• Has more time asleep or unaware

• Has many ‘primitive’ reflexes present -Startles easily

• May cry out or mumble ‘constantly

• Increases vocalizations with distress

• Difficult to calm

• Knows familiar from unfamiliar

• Touch and voice make a difference in behaviors

How to Help

• Hand under hand help & care

• Check for reflexes – modify help and approachto match needs

• Guide movements

• Use calm, rhythmic movements and voice

• Come in from back of extremities to clean

• Stabilize with one hand and work with other

How can we help… better?

It all starts with

your approach!

How you help…

• Sight or Visual cues

• Verbal or Auditory cues

• Touch or Tactile cues

Believe -

People with dementia

Are doing

The BEST they can!

What shouldn’t we do???

• Argue

• Tell ‘WHOPPERS’ – that relate to emotions

• Ignore problem behaviors

• Try a possible solution only once

• Give up

• Let them do whatever they want to

• Force them to do it

How Can You Be Prepared & RespondWhen Something Does Happen?

• Think…, then act & respond

• Use the positive physical approach

• Reflect on the emotional message

• Figure out the ‘need’

• Use old & familiar to help with new

• Take time & energy to problem solve… after

• If its not working … STOP, Back off, try again

So… What Should You Do?

• Plan for the probabilities

• Create environments that reduce risk

• Get skilled or find someone who is

• Get others on board

• Keep track of ‘what is’

• Watch for signs of changes

• Get help early – call or contact

• Be flexible

How You Feel isREAL & Important!

• However you feel is OK, its how you feel!

• It’s not about judgment, its about support!

• Acknowledge the feelings…

• Then decide what to do about it…

• Is it what you want to feel?

• IF YES, go with it…

• If NO, work to change it!

If You are having a HARD TIME…

• Think about…

– What HELPS YOU

– What you NEED

– What is MISSING

– What you are struggling with

– Who else might help

– What will happen if you don’t do something

– What might happen if you do…

Some Ideas for changing…

• Pick one thing

• Plan on baby steps

• Get support for you

• Build a routine

• Check in on your feelings

• Add something before giving something up

• Believe it - Not everyone is meant to do hands oncare

• Give it a try… not permanent… just try

A Few More Ideas

• Set aside a few minutes – use a timer!

• Breathe

• Smile … Laugh! – look for some funnies

• Remember a good time

• What do you get out of the relationship

• Use at least one of the STRESS TAMERS

10 Minute Stress Tamers

• Sit quietly in calm surroundings with soft lights andpleasant scents.

• Aromatherapy – lavender, citrus, vanilla, cinnamon,peppermint, fresh cut grass.

• Breathe deeply – rest your mind & oxygenate• Soak - in a warm bath, or just your hands or feet• Read - Spiritual readings, poetry, inspirational

readings, or one chapter of what you like…• Laugh and smile - Watch classic comedians, Candid

Camera, America’s Funniest Home Videos, look atkid or animal photos…

• Stretch – front to back, side to side, & across• Garden – work with plants


• Beanbag heat therapy. Fill a sock with dry beans andsew or tie closed. Heat bag and beans in a microwavefor 30 seconds at a time. Place on tight muscles andmassage gently; relax for ten minutes.

• Remember the good times - Record oral memories -scrapbooks, photo journals, keepsake memorypicture frames. Just jot!

• Do a little on a favorite hobby.• Have a cup of decaffeinated tea or coffee• Play a brain game – crosswords, jigsaws, jeopardy,

jumbles…• Look through the hymnal and find a favorite – hum it

all the way through…


• Books on Tape - Rest your eyes and read• Soothing sounds –

– Music you love– Music especially for stress relief– Recorded sounds of nature

• Listen to coached relaxation recordings• Pamper Yourself – think of what you LOVE and give

yourself permission to do it for 10 minutes• Neck rubs or back rubs – use the ‘just right’ pressure• Hand Massages – with lotion or without – its up to

you…


• Take a walk.• Sit in the sun.• Rock on the porch.• Pray or read a passage from scripture• Journal - Take the opportunity to “tell it like it is.”• Cuddle and stroke a pet.• Have that cup of coffee or tea with a special friend

who listens well.• Pay attention to your personality.

– If you rejuvenate being alone, then seek solitude.– If you rejuvenate by being with others, seek company.

BREATHE!!!

• Take a deep breath in• BLOW it all the way out• Take another breath in• BLOW it out• Take one final breath in AND• SING IT OUT….

• Feel what happened to you…• Look 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”

Identify

• What you’re good at…and what you’re not

• Who can help…and how they can help

• What really matters

Final Suggestions

• Back off, change something and try again

• Adopt a “SO WHAT” mentality

• Try a support group

• Accept yourself, and the person with dementia

• Look for the JOY!!!

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


•Early - Young Onset•Normal Onset


Lewy BodyDementia

DEMENTIA



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

What Happens Next?

Understanding the Changes inAbility When Someone is Living

with Dementia

Teepa Snow, MS, OTR/L, FAOTA

What is Dementia?

What’s Happening?

How Can I Help?

Beliefs

• People with Dementia are Doing the BEST theycan

• Our goal should be to become a good carepartner NOT a care giver

Ten Early Warning Signs• memory loss for recent or new

information – repeats selffrequently

• difficulty doing familiar, butdifficult tasks – managingmoney, medications, driving

• problems with word finding,mis-naming, or mis-understanding

• getting confused about time orplace - getting lost whiledriving, missing severalappointments

• worsening judgment – notthinking thing through likebefore

• difficulty problem solving orreasoning

• misplacing things – puttingthem in ‘odd places’

• changes in mood or behavior

• changes in typical personality

• loss of initiation – withdrawsfrom normal patterns ofactivities and interests

Common Issues• Not wanting F PoA or HC PoA• Not willing to go to the doctor• ‘Losing’ Important Things• Getting Lost• Unsafe task performance• Repeated calls & contacts• Refusing help• Being rude• ‘Bad mouthing’ you to others• Making up stories• Resisting/refusing care• Use of drugs or alcohol to

‘cope’• Making 911 calls• Mixing day & night• No solid sleep time• Not following care/rx plans• No initiation - apathy• Perseveration• Emotional meltdowns

• Swearing, sex talk, racial slur, ugly words• Not doing personal care• Paranoid/delusional thinking• Threatening caregivers• Seeking people & places from the past• Shadowing• Eloping or Wandering• Seeing things & people• Getting ‘into’ things• Undressing in public• Pxs w/intimacy & sexuality• Feeling ‘sick’ c/o of pain• Striking out at others• Falls & injuries• Contractures & immobility• Infections & pneumonias• Pxs w/ eating or drinking

Everyone deserves aGOOD Work-up

Not everything that lookslike dementia is dementia

What Should the Doctor Do?

• A thorough physical & medical history

• Blood work

• A neurological exam

• A good history from the person and the family ofthe ‘problem’

• A complete medication review

• A CAT scan or MRI or PET scan

• Neuropsychological testing – screening forcognitive changes

• FOLLOW-UP and counseling or at least a referral


•Young Onset•Late Onset


Lewy BodyDementia

DEMENTIA



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

G. Small, UCLA School of Medicine.

Normal EarlyAlzheimer’s

LateAlzheimer’s

Child

The person’s brain is dying

Normal Brain Alzheimers Brain

Learning &MemoryCenter

HippocampusBIG CHANGE

Understanding Language – BIG CHANGE

Hearing Sound – Not Changed

Sensory StripMotor Strip

White MatterConnections

BIG CHANGES

Formal Speech &Language

CenterHUGE CHANGES

Automatic SpeechRhythm – Music

ExpletivesPRESERVED

ExecutiveControl Center

EmotionsBehaviorJudgmentReasoning

Vision Center – BIG CHANGES

The Basics for Success…

• Be a Detective NOT a Judge

• Look, Listen, Offer, Think…

• Use Your Approach as a Screening Tool

• 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

Intervention & Programming to:

• physical activity

• mental activity

• social activity

• spiritual involvement

• well-being and self-worth

• minimize ‘risky’, challenging, or ‘dangerousbehaviors

• reduce anxiety or distress

Key Issues

• Early Diagnosis

• Medications & Treatment

• Legal Issues

• Financial Issues

• Care Options & Funding

• Family Support & Education

• Staff Support and Education

GET HELP!

• Support for YOU

• Help with the person

• Check out options – home care, day care,residential care

• Check out places – visit, observe, reflect

• Plan ahead – when NOT if

• Act before it is a crisis

• Watch yourself for signs of burn-out

• Set limits… It’s a marathon!

Latest Thinking AboutPrevention…

• Help…– Mental activity

– Aerobic activity

– Vitamin E & C in food

– Heart Smart Diet

– Omega 3 fatty acids (fish,canola, flaxseed oils)

– Lower weight

– Not smoking

– Enough sleep

– De-stressing

• Help…– Keeping iron in limits

– Keeping homocysteine ‘right’– Vitamin B’s

– Staying socially active

– Getting depression treated

– Control diabetes better

– Control hypertension better

– Statins (if needed)

– NSAIDS (if needed)

– Prevent head injuries

So… What is Dementia?

• It changes everything over time

• It is NOT something the person can control

• It is NOT always the same for every person

• It is NOT a mental illness

• It is real

• It is hard at times

Dementia can be treated

• With knowledge

• With skill building

• With commitment

• With flexibility

• With practice

• With support

• With compassion

How to Get Started…

• Be Honest …

• What is Going on NOW?

• Get someone to help you look at it

• Talk about ‘what is’ …

– The GOOD

– The BAD

– The UGLY!

Take Some Time To…

• Figure out WHO you are

And

• WHO your partner is…

• Similarities & Differences

And

• Respect Both Partners’ Needs

How can we help… better?

It all starts with

your approach!

How you help…

• Sight or Visual cues

• Verbal or Auditory cues

• Touch or Tactile cues

What shouldn’t we do???

• Argue

• Tell ‘WHOPPERS’ – that relate to emotions

• Ignore problem behaviors

• Try a possible solution only once

• Give up

• Let them do whatever they want to

• Force them to do it

So WHAT should we do???

Remember

who

has the healthy brain!

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

Diamonds

• Visual Cues - you and the environmentLook friendly, respond to their emotions

Keep things as much the same as possible, but simplify

• Verbal cues – be prepared for repeats & oldstories

– Use a few of their words, then ask:

• Tell me more about it

• Could you show me what you do with it?

• Touch Cues – hug and touch responsively

Emeralds

Changing color

Not as Clear or Sharp - Vague

Good to Go – Need to ‘DO’

Flaws are Hidden

Time Traveling


• The environment

– Overall look (friendly, fun, familiar, forgiving)

– Surfaces to work on or do things on

– Places to sit (paired chairs)

– Set up Props (objects that ‘say’ what to do)

– Highlighted areas (light, color contrast, clutterreduction, organized)

– Hidden – what is NOT to be done, what is alreadydone, what ‘triggers’ distress

More Visual Cues that Help

• You

– Facial expression

• Friendly

• Concerned

– Gestures

• Invite with gestures and your face

• Indicate next item to use, or options

– Offer items

• Offer an item in correct orientation

• Present two to pick from


• Tone of Voice

– Friendly

– Interested

– Concerned

• Reduce and Focus words

– Use preferred name for attention

– Match words with gestures or offering

• Listen and use their words to connect

More Verbal Cues

• When becoming distressed

– Use PPA – Let them come to you, if possible

– Listen - Get emotionally connected to where theyare

– Use empathic comments

– Listen for key words

– Go with their FLOW – don’t push for the change

– THEN Use redirection, NOT distraction


• Limit this form of helping!

– Match it with a visual & verbal cue combo

• Offer objects – don’t put hands on

• Share the task -

– Give them something to do while you do your part

• Do ‘it’ with/to someone else first, thenapproach them

More Physical Cues

• When distressed

– Match your touch to their preferences

– Hand-under-Hand FIRST

– Back rub – if interested

– Hug – show first

– Increase space and distance, if cued

– BACK OFF, if it is not working

Ambers

Amber Alert

Caution!

Caught in a moment

All about Sensation

Explorers


• Automatic social greeting signals

• Lighted work surfaces with strong props

• Demonstrations – work along side

• Model the actions

• Do the action one time, then offer the prop

• Show one step at a time

• Show a NEW item, then cover the old


• Call name

• Use simple noun, verb, or noun + verb

– “Cookie?”

– “Sit down”

– “Let’s go” (with gesture)

• Give simple positive feedback

• Listen for their words, then

– use a few and leave a blank at the end of thesentence


• Show the motion or action wanted

• Touch the body part of interest

• Position the prop for use – light touch

• Show the motion on yourself

• Use hand under hand guidance

• Offer the prop once started – encourage theiruse of the item

Rubies

Hidden Depths

Red Light on Fine Motor

Comprehension & Speech Halt

Coordination Falters

Wake-Sleep Patterns are Gone


• Demonstrate what you want

• Give big movements to copy

• Move slowly & with rhythm

• Present cues in central visual field about 12-18inches out

• Hold things still – allow exploration

• Offer your hand

• Smile while offering support


• Call name to get attention – at 6’ out

• Use ‘song’ to connect

• Give 1-3 words only

• Combine verbal direction with gesture ordemo

• Give one ‘action’ cue at a time

• Match tone/inflection to intent

• Give positive ‘Strokes’ with attempts


• Hand-under-hand

• Touch body part to be moved or used

• Place hand/foot then gesture

• Offer comfort touch as desired before taskattempt

• Back rubs –

– Flat and slow – to calm

– Finger tips and quick circles – to awake

How to Help

• SLOW yourself DOWN

• Hand under hand



• Use music and rhythms – help get or stopmovement




• Touching too quickly – startling

• Leaning in – intimate space invasion

• Talking too loudly

• ‘Baby-talking’

• Not talking at all

• Not showing by demonstrating

• Trying to understand what is said, by beingconfrontational

Pearls

Hidden in a Shell

Still & Quiet

Easily Lost

Beautiful - Layered

Unable to Move – Hard to Connect

Primitive Reflexes on the Outside

Pearls

• The end of the journey is near

• Multiple systems are failing

• Connections between the physical and sensoryworld are less strong

• We are often the bridge – the connection

• Many Pearls need our permission to go –

– They are still our moms, dads, spouses, friends

– They will go in their own time

– IF we don’t try to change what is

Visual Cues to Help

• Get into supportive position

• Place your face in the central field of vision

• Make sure light comes from behind theperson – into your face

• Bring up lights carefully

• Move slowly so they can follow you

• Place items to be used in central field

Verbal Cues to Help

• Keep your voice deep & calm

• Put rhythm in your voice

• Tell what you are doing and what is happeningwhile you give care

• Reflect emotions you think you see

• Offer positive comments & familiar phrases asyou offer care

• Quiet down, if signaled to do so

Touch Cues to Help

• Use firm, but gentle palm pressure at joints tomake contact

• Always try to maintain contact with one handwhile working with the other

• Once physically connected keep it

• Use flats of fingers and palms for care

• Always use hand under hand when doingsomething ‘intense’

Progression of theCondition

To the TUNE of ‘This Old Man’

• SAPPHIRE true, you and me

• The choice is ours, and we are free

• To change our habits, to read, and think anddo

• We’re flexible, we think it through!

DIAMOND bright, share with ME

RIGHT before, where I can be

I need routine and different things to do

Don’t forget, I get to CHOOSE!

EMERALD – GO, I like to DO

I make mistakes, but I am through!

Show me only one step at a time

Break it down and I’ll be fine!

AMBER – HEY!, I touch and feel

I work my fingers - rarely still

I can do things, once I copy you

What I see is what I do!

RUBY – skill – it just won’t go

Changing something must go SLOW

Use your body to show me what you need

Guide, don’t force me. Don’t use speed!

Now a PEARL, I’m near the end

But I still feel things through my skin

Keep your handling always firm and slow

Use your voice to calm my soul.

I Noticed Something!or

HELP!

Using the Time-Out Signal

Time Out Signal

BREATHE!!!

• Take a deep breath in• BLOW it all the way out• Take another breath in• BLOW it out• Take one final breath in AND• SING IT OUT….

• Feel what happened to you…• Look at what happened to the people around you…• Think about how and when you might do this…

What you leave behind is notwhat is engraved in stone

monuments, but what is woveninto the lives of others

Let Go:

• How it “used to be”

• How it “should be”

• How you “should be”

Take care of yourself

• What you’re good at…and what you’re not

• Where you are in the grieving process

– Denial, anger, bargaining, depression, acceptance

• Who can help…and how they can help•

• What really matters

Remember who has the big brain

• Learn to respond, not react

• If there is RESISTANCE - Back off, change something,and try again

• Adopt a “SO WHAT” mentality

• Accept yourself, and the person with dementia

• It’s a relationship of the moment, NOT of the past

• Try a support group

• Look for the moments of JOY!!!

Documents

Activities and Programming for MenTo Connect with Ambers • Make an Emotional Connection – Use props or objects – Consider PARALLEL engagement at first • Look at the ‘thing’,