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How to Give Care and Live Life in the Early and Middle Stages of Dementia

Early to Middle Stages of Dementia:

Diamonds -Many facets, still often clear, can really shine -Sharp, hard, rigid, inflexible, can cut -Many facets, still often clear, can really shine -Are usually either Joiners or Loners -Can complete personal care in familiar place -Usually can follow simple prompted schedules -Misplaces things and can’t find them -Resents takeover or bossiness -Notices other people’s misbehavior and mistakes -Vary in lack of self-awareness -Use old routines and habits -Control important roles and territories, use refusals

Common Diamond Issues: Unfamiliar Settings or Situations Hospital stay Housing change Change in family Change in support system Doctor/dentist visits New diagnoses Traveling or vacations IADLs Money management Transportation/driving Cooking Home maintenance and safety Caring for someone else Pet maintenance Medication administration

Be Prepared for Repeats! Expect repeated stories, questions, requests For repeated stories, use “tell me about it” Write down or repeated stories because you may need them for supportive communication later in the disease Make sure you are connected to respond Repeat a few of their words in a question Answer their question, then: Go to new words, use enthusiasm! A new place Add a new activity (possibly related)

How to Help Diamonds: - Apologize: “I’m sorry!” or “I didn’t mean to…” Friendly, not bossy: leader to leader Make it temporary with “Let’s just try…” Share responsibility, not take over Use as many old habits as possible Give up being ‘right’ Go with the flow Give another ‘job’ when taking one away

Diamond Interests: What they feel competent at What they enjoy Who they like What makes them feel valued Where they feel comfortable but stimulated What is familiar but intriguing What is logical and consistent with historic values and beliefs Whoever is in charge

Bad Helper Habits to Break: Saying “Don’t you remember?” Not recognizing or accepting differences Trying to force changes in roles or responsibilities Trying to take over completely Taking responsibility for saying “No” Accepting things at face value Arguing with them

Emeralds -Not as clear or sharp, more vague -On the go, need to ‘do’ -Changing color -Not as clear or sharp, more vague -On the go, need to ‘do’ -Flaws may be hidden -Time traveling is common -Are usually Doers or Supervisors -Do what is seen, but miss what is not seen -Must be in control, but not able to do it correctly -Do tasks over and over, or not at all

Common Emerald Issues: Doesn’t do care routinely, but thinks they did Makes mistakes in sequence but are unaware Repeats some care routines over and over Resists or refuses help Gets lost, can’t find where to do care Limited awareness of real needs such as hunger, thirst, voiding, bathing, grooming because they have other ‘stuff’ to do

More Emerald Issues: Afternoon or evening: “Got to go home!” Daytime: “Got to go to work!” Looking for people/places from the past Losing important things, thinking others stole/took them Doing private things in public places Having emotional meltdowns Treating strangers like friends and vice-versa

How to Help Emeralds: - Provide ‘subtle’ supervision for care - Think “So What?”… is it worth it? - Provide ‘subtle’ supervision for care - Provide visual prompts: - Gestures, objects, set-up, samples, demonstrations - Hide visual cues to ‘stop’/prevent behavior: - Put away, move out of range, leave - Use the environment to cue - Use humor, friendliness, support

Emerald Interests: Doing familiar tasks Doing 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

Bad Helper Habits to Break: Noticing and pointing out errors Telling, not asking: “You need to…” Trying to take over, offering “Let me help you” Putting hands on, ‘fussing’ Reality orientation, arguing, or lying Trying to use ‘distraction’ Trying to go back and ‘fix’ something Treating them like a child Reacting instead of responding Rejecting topics of conversation Not going with the flow!

Ambers -Caught in a moment -Amber Alert: caution! -Caught in a moment -All about sensation and sensory tolerance, easily over or under-stimulated -May be private and quiet or public and noisy -No safety awareness -Ego-centric -Lots of touching, handling, tasting, mouthing, manipulating -Explorers, get into things, invade space -Do what they like and avoid what they do not

Common Amber Issues: Getting into other’s things, taking other’s belongings Bothering others Not able to make needs known Not understanding what caregivers are doing Not liking being helped/touched/handled Not liking showers or baths Repetition of sounds/words/actions

How to Help Ambers: - Provide step-by-step guidance and help - Give demonstration, show - Hand-under-Hand® guidance, may be able to do on their own after a few repetitions, - Offer something to handle, manipulate, touch, or gather - Limit talking, noise, touch, other activities - Substitute, don’t subtract

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 interesting, or places that are quiet and private Textures, shapes, movement, colors, numbers, stacking, folding, sorting

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

It’s Not ‘The Dementia’: It’s What You Choose to Do About It!

What Do People with Early to Mid-Stage Dementia Need? Daily Routine!!!! Help to fill their day with meaning A Balance of: Productive activity: feeling valued Leisure activity: having fun Self-care activity: wellness, health, personal care Restorative activity: sleep, rest, and re-energizing A Match-Up for Preferences: Large Group, Small Group, 1:1, Alone Active versus passive Sensory options: visual, auditory, tactile, olfactory, gustatory

What Does it Take to Have a Day with Meaning and Joy? Know each person! Understand activities! Make and use a schedule! Build staff skills! Manage the environment! Resources to succeed

Who the person has been… Know each Person Life History Who the person has been… Personal history and background Health Status medical conditions, medications, limitations & abilities Emotional status psychological condition and mental health & limitations Cognitive Status thinking, memory, processing skills and limitations Sensory Status sight, hearing, touch, balance, coordination, temperature regulation Routines and Habits patterns of behavior, daily routines, time use & schedules

Personal Preferences and Values: Who have you been? What did you value? Who are you now? What do you value now? Why does it matter? Who gets a ‘say’? Who gets to set the priorities?

Personality Traits: Introvert - Extrovert Lots of Details - Big Picture Only Logical - Emotional Planning Ahead - Being in the Moment

of Familiar and Favorite Activities Design Each Day Make a schedule and follow it Be structured but allow flexibility Offer a variety of activities every day Leisure, work, rest, self-care, groups and 1:1, passive and active 8 am – coffee circle 8:30 – songs of joy 9 am – time to ‘go’ 9:15 – take a hike – walk’n’roll 10 am – cool down & stretch 10:30 – watering hole 11 am - ‘use your brains’ games 11:30 - time to ‘go’ – wash up 11:45 – ‘set-‘em up’ crew 12 noon – let’s eat 12:30 – clean up crew 1 pm – music and meditation 1:30 – coupons clipping 2 pm – time to ‘go’ 2:15 – let’s dance Create a flow for the day Build up and then slow down Circadian rhythms Create Group schedules but also build individual schedules Not everything is for everybody! Build a Foundation of Familiar and Favorite Activities Add a few special events and something different © Teepa Snow, Positive Approach, LLC – to be reused only with permission.

Understand Activities What type of activity is it??? Self-care, leisure, work, rest… Spiritual, social, physical, cognitive, passive, active, solitary Analyze the Activity… What do you need to do it? What skills, abilities, interests? What is the activity all about? Doing something or making something? Modify and Structure the Activity for Success Change the materials, the complexity, the setting, the help offered, the task demands, or the purpose of the activity

Two Examples: Paying Bills: Washing Dishes: Do it independently Together: use a calculator Together: do all of them Together: do one at a time You do most, they sign and put in envelopes You do all but the signature They put on stamps Both take them to the mail box Do it independently only after meals Do it independently: when needed to fill time Together: one wash, one dry Do parts Watch and guide Carry dishes to/from sink

Manage the Environment Create & Use Storage Make set-up and clean-up part of the activity Pay attention to the lights, sounds, seating, work surface, space… Do the ‘right stuff’ in the ‘right place’ Match what you do to where you are… Change it if you need to - to make it work! Use the space well Plan and place for best effect Keep it adult Make sure supplies, activities, and games are meaningful Play and laugh with folks, not at them Make it look friendly Get me to want to come Give out tools and materials ‘just in time’ Control the activity so clients are successful – not overwhelmed - not out of synch

Take a Look, Listen, Feel: Lighting: adequate, non-glare, focused Sounds: background, distracting, volume Feel: Temperature Space: crowded, intimate, personal, public Work surface Seating surface Walking surface Familiar? Friendly? Fun? Forgiving?

Resources to Succeed The right equipment for clients’ needs Enough Supplies & Materials The right equipment for clients’ needs Good quality lighting Skilled leadership for the activity Good work surfaces Seating that works Enough help for each person A Back-Up Plan Resources to Succeed

Two Options: Doing: Making: Filling socks: rice socks, bean socks, corn socks Adding herbs: lavender, citrus, eucalyptus, mint Putting a sock inside another sock Heating the socks Rubbing the socks over muscles Emptying socks out Fruit salad: from fresh fruit Fruit salad: from canned fruit Fruit salad: from pre-cut fruit Fruit salad: one fruit and yogurt Fruit salad: dried fruit, granola, and yogurt Putting the fruit salad in small cups or bowls Serving the fruit salad

How Do We Create Meaningful Activities?

Key Activities to Consider: Productive - Work Enjoyment - Leisure Wellness - Personal Care Restorative - Rest

Productive Activities: Helping another person Helping family members/caregivers Completing community tasks Making something Sorting things Fixing things Building things Creating something Caring for things Counting things Folding things Marking things Cleaning things Taking things apart Moving things Cooking/baking Setting up/breaking down Other ideas

Leisure Activities: Active: Passive: Socials Sports Games Dancing Singing Visiting Hobbies Doing, Talking, Looking Entertainers Sport program/event Presenters Living room or lobby sitting TV programs: watched Activity watchers Being done to

Self-Care and Wellness Activities: Cognitive: Physical: Exercise Walking Strengthening tasks Coordination tasks Balance tasks Flexibility tasks Aerobic tasks Personal care tasks Table top tasks Matching, sorting, organizing, playing Table top games Cards, board games, puzzles Group games Categories, crosswords, word play, old memories

Rest and 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 and rub Listen to wind chimes Aromatherapy

Good Activities Are Ones That Involve: Plants Animals People Music Objects

How Does Skill Change Over Time With Dementia? Interests Helper cues that help Environmental cues that help Ability to focus and change focus Sensory awareness and processing Motor skills: gross and fine Decision making and reasoning

Progression of the Condition 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 and do 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 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, if I copy you, What I need 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.

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