Dementia. Understanding the Condition & Improving Quality of Life by Changing How We Do What We Do!. Dementia is common BUT NOT NORMAL. 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
Dementia Understanding the Condition & Improving Quality of Life by Changing How We Do What We Do!
Dementia is common BUT NOT NORMAL
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 80-Year-Old Brain PET Scan of 20-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
Vascular Dementias (Multi-infarct) DEMENTIA Lewy Body Dementia • Alzheimer’s • Disease • Young Onset • Late Onset • 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 80-Year-Old Brain PET Scan of 20-Year-Old Brain PET and Aging ADEAR, 2003
Positron Emission Tomography (PET) Alzheimer’s Disease Progression vs. Normal Brains Early Alzheimer’s Late Alzheimer’s Normal Child G. Small, UCLA School of Medicine.
Normal Brain Alzheimers Brain
Learning & Memory Center Hippocampus BIG CHANGE
Sensory Strip Motor Strip White Matter Connections BIG CHANGES Automatic Speech Rhythm – Music Expletives PRESERVED Formal Speech & Language Center HUGE CHANGES
Executive Control Center Emotions Behavior Judgment Reasoning
A Positive Approach(To the Tune of Amazing Grace)Come from the frontGo slowGet to the side,Get lowOffer your handCall out the name then WAIT…If you will try, then you will seeHow 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!