Dementia Understanding the Condition & Improving Quality of Life by Changing How We Do What We Do!

Dementia is common BUT NOT NORMAL

Risk Factors Increasing Age Life Style Choices – No Exercise – Bad Diet – Cognitive stagnation – Social Isolation – Stress – Sleep Issues – Head injuries Genetics – Can run in families – Certain types are dominant genes – Other types are ‘risk factor’ genes – Some types are ‘spontaneous mutations’

Four Truths About Dementia At least 2 parts of the brain are dying – One related to memory & the one other It is chronic – can’t be fixed It is progressive – it gets worse It is terminal – it will kill, eventually

Ten Early Warning Signs Memory loss for recent or new information – repeats self frequently Difficulty doing familiar, but difficult tasks – managing money, medications, driving Problems with word finding, mis-naming, or mis- understanding Getting confused about time or place - getting lost while driving, missing several appointments Worsening judgment – not thinking thing through like before Difficulty problem solving or reasoning Misplacing things – putting them in ‘odd places’ Changes in mood or behavior Changes in typical personality Loss of initiation – withdraws from normal patterns of activities and interests

Everyone deserves a Good Work-up Not everything that looks like dementia is dementia

What Should the Doctor Do? A thorough physical and medical history Blood work A neurological exam A good history from the person and the family of the “problem” A complete medication review A CAT scan or MRI or PET scan Neuropsychological testing – screening for cognitive changes Follow-up and counseling or at least a referral

Could It Just Be Getting Old? Not Really There is a difference At first it may be hard to tell Then, you will start to notice patterns One or more these things start to show: – Memory – Word finding – Thinking & Problem Solving – Behaviors

What is Dementia?... It is BOTH a chemical change in the brain AND a structural change in the brain So… Sometimes they can and sometimes they can’t

PET Scan of 20-Year-Old Brain PET Scan of 80-Year-Old Brain PET and Aging ADEAR, 2003

Cognitive Changes with Aging Normal changes = more forgetful & slower to learn MCI – Mild Cognitive Impairment = – Immediate recall, word finding, or complex problem solving problems (½ of these folks will develop dementia in 5 yrs) Dementia = Chronic thinking problems in > 2 areas Delirium = Rapid changes in thinking & alertness (seek medical help immediately ) Depression = chronic unless treated, poor quality, I “don’t know”, “I just can’t” responses, no pleasure can look like agitation & confusion

Alzheimer’s Disease Young Onset Late Onset Vascular Dementias (Multi-infarct) Lewy Body Dementia DEMENTIA Other Dementias Genetic syndromes Metabolic pxs ETOH related Drugs/toxin exposure White matter diseases Mass effects Depression(?) or Other Mental conditions Infections – BBB cross Parkinson’s Fronto- Temporal Lobe Dementias

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. Normal Early Alzheimer’s Late Alzheimer’s Child

Normal BrainAlzheimers Brain

Learning & Memory Center Hippocampus BIG CHANGE

Understanding Language – BIG CHANGE

Hearing Sound – Not Changed

Sensory Strip Motor Strip White Matter Connections BIG CHANGES Formal Speech & Language Center HUGE CHANGES Automatic Speech Rhythm – Music Expletives PRESERVED

Executive Control Center Emotions Behavior Judgment Reasoning

Vision Center – BIG CHANGES

A Positive Approach (To the Tune of Amazing Grace) Come from the front Go slow Get to the side, Get low Offer your hand Call out the name then WAIT… If you will try, then you will see How different life can be. For those you’re caring for!

Brain atrophy the brain actually shrinks cells wither then die abilities are lost with Alzheimer’s area of loss are fairly predictable … as is the progression BUT the experience is individual…

Memory Loss Losses – Immediate recall – Attention to selected info – Recent events – Relationships Preserved abilities – Long ago memories – Confabulation! – Emotional memories – Motor memories

Understanding Losses – Can’t interpret words – Misses some words – Gets off target Preserved abilities – Can get facial expression – Hears tone of voice – Can get some non- verbals – Learns how to cover

Sensory Changes Losses – Awareness of body and position – Ability to locate and express pain – Awareness of feeling in most of body Preserved Abilities – 4 areas can be sensitive – Any of these areas can be hypersensitive – Need for sensation can become extreme

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/sex words/forbidden words

Impulse & Emotional Control Losses – becomes labile & extreme – think it - say it – want it - do it – see it - use it Preserved – desire to be respected – desire to be in control – regret after action

How You Look At Dementia MATTERS! It is NOT all about LOSS It is NOT ‘untreatable’ It is NOT ‘unpredictable’ Behaviors DON’T come out of ‘nowhere’ Dementia DOESN”T just affect the person with the disease – it impacts all of us

Common Concerns Not wanting F PoA or HC PoA Not willing to go to the doctor Losing important things Getting lost Unsafe task performance Repeated calls and 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 and 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 and places from the past Shadowing Eloping or wandering Seeing things and people Getting “into” things Undressing in public Pxs w/intimacy and sexuality Feeling sick c/o of pain Striking out at others Falls and injuries Contractures and immobility Infections and pneumonias Pxs w/ eating or drinking

Why I Use What I Use… 3 systems – all use numbers Each has value – together confusing People are not numbers Until we begin to the see the beauty and value in what the person is at this point in time – we will never care for them as we should Gems are precious and unique – common language and characteristics

Gem Stones Based on Allen Cognitive Levels – – Cognitive Disability Theory – OT based Creates a common language & approach to providing – – Environmental support – Caregiver support & cueing strategies – Setting expectations regarding retained abilities and lost skills – Promotes graded task modification for success

How Do the Gems Help? Use familiar concepts to talk about a difficult subject. Focus on what is valued. Allow to us to get beyond the words – dementia and Alzheimer’s disease. Open the door to talking about changes. Allow us to speak in a “code” to protect dignity.

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

Sapphires Brains are Still True Blue! You and Me on a GOOD Day Normal Aging – No Dementia Some are ‘Stars’ – Some are Not Slower – but still shining

Sapphires Clear & True – No dementia May feel ‘blue’ over changes Importance of ‘time’ true to lifetime Will like to shine at times Can make their own setting ‘right’ Will set their own pace Will still need us in their lives They can CHOOSE

Diamonds Still Clear Sharp - Can Cut Hard - Rigid - Inflexible Many Facets Can Really Shine

Diamonds Know Who’s in Charge – Respect Authority Can do OLD habits & routines Become more territorial OR less aware of boundaries Like the familiar – FIGHT CHANGE Can pull it together to make you look bad Know how to push your buttons Want to keep roles the same Tell the same stories ask the same ?s

Emeralds Changing color Not as Clear or Sharp - Vague Good to Go – Need to ‘DO’ Flaws are Hidden Time Traveling

Emeralds Think they are FINE Get emotional quickly Make mistakes – don’t realize it Do over and over OR Skip completely Ask – “What? Where? When?” Like choices Get lost in past life, past places, past roles Need help, DON’T know it or like it!

Ambers Amber Alert Caution! Caught in a moment All about Sensation Explorers

Ambers Get into stuff Fiddle, mess, touch, taste, dig, tear, fold….. Move toward action and noise OR away Sensory tolerance Sensory need Mouth, fingers, feet, genitalia Can’t figure it out… react physically

Rubies Hidden Depths Red Light on Fine Motor Comprehension & Speech Halt Coordination Falters Wake-Sleep Patterns are Gone

Rubies Fine motor stops Hard to stop and hard to get going Limited visual awareness One direction – forward only Can’t figure out details – but do copy us SLOW to change On the go or full stop Use music and rhythm

Pearls Hidden in a Shell Still & Quiet Easily Lost Beautiful - Layered Unable to Move – Hard to Connect Primitive Reflexes on the Outside

Pearls More Time WITHIN Moments of awareness - LAYERS Comfort – sights, sounds, touch, smells, tastes, movements GO SLOW – Be CALM – Stay in Touch

Pearls Can’t move Not aware of the world around – most of the time Problems swallowing Hard to get connected How we touch and help matters SLOW!!!! Varies a LOT

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! 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.

Early - Get good long term care insurance! Then - check out the possibility that something IS WRONG See someone who is interested in DEMENTIA and ALZHEIMER”S DISEASE Consider a specialist…

Mid-Way Use other forms of transportation – no driving Manage $$$ safely Manage Meds Provide support DAILY Monitor for task initiation & completion Put things out that need to be done Secure & put away things that should NOT be used Secure exits & monitor for elopements Give lots of things to DO.. That have meaning

End of the Journey Nutrition & safe intake – when it stops? Hands on care – hand under hand, slow & steady Meet needs & control pain Music and environments that are friendly Things to touch and handle Safe areas to move around in Places & times to rest Comfortable temperature & places

Intervention & Programming to: physical activity mental activity social activity spiritual involvement well-being and self-worth minimize ‘risky’, challenging, or ‘dangerous behaviors 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 About Risk Reduction…This Is For US! 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!

I Will Change! (to the tune of This Little Light of Mine) By Teepa Snow

I am gonna meet and greet Before I start to treat I am gonna meet and greet Before I check your feet I am gonna meet and greet Before I help you eat How I start sets us up to succeed!

No more just “Getting’ it Done” I’m gonna DO with you No more just “Getting’ it Done” I’m gonna help you thru No more just “Getting’ it Done” We’re gonna work, we two Cause if I do it ALL, we BOTH LOSE!

I’m gonna laugh and dance with you Not just watch and frown I’m gonna laugh and dance with you Not just stand around I’m gonna laugh and dance with you We’ll really go to town For the POWER of JOY I have found!

Your Guide to Support Family Members with Dementia DVD

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