Early Signs and Symptoms of Dementia. Symptom Recognition and Different Dementias And What to Do About It

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Handouts are intended for personal use only.any copyrighted materials or DVD content from Positive Approach, LLC (Teepa Snow) may be used for personal educational purposes only. This material may not be copied, sold or commercially exploited, and shall be used solely by the requesting individual. Copyright 2017, All Rights Reserved Teepa Snow and Positive Approach to Care Any redistribution or duplication, in whole or in part, is strictly prohibited, without the expressed written consent of Teepa Snow and Positive Approach, LLC Early Signs and Symptoms of Dementia Symptom Recognition and Different Dementias And What to Do About It 1

PET and Aging: PET Scan of 20-Year-Old Brain PET Scan of 80-Year-Old Brain ADEAR, 2003 Positron Emission Tomography (PET) Dementia Progression vs. Normal Brains Normal Early Dementia Late Dementia Child G. Small, UCLA School of Medicine. As We Age, WE DO NOT lose function in our Brains, UNLESS: Something Goes Wrong with Our Brains 2

Other Words We Sometimes Use: - Senile - Hardening of the arteries - Crazy - Not right - Stubborn and ornery - Losing it - Just getting old - Not trying - More forgetful - Pleasantly confused What is the Difference Between Forgetfulness and Memory Loss that Comes with Dementia? Is there a CLEAR Difference? YES!!!! But, Couldn t It Just Be Forgetfulness or Getting Old? - There is a difference - At first it may be hard to tell - Then you start to notice patterns - One of these things start to show changes: - Memory - Problem solving - Word finding - Behavior 3

Ten Early Warning Signs for Alzheimers and Some Other Dementias: -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 misunderstanding -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 Is This ALWAYS Alzheimers? - Some form of DEMENTIA - Symptom of another health condition - Medication side-effect - Hearing loss or vision loss - Depression - Delirium - Pain-related Normal versus Not Normal: NORMAL Aging: Slower to think Slower to do Hesitates more More likely to look before you leap Know the person but not 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 even later Confused about past versus now For you it s VERY DIFFERENT 4

How Common is Dementia? The risk goes up dramatically with increasing age America is aging Various dementia will increase by 300% over the next 50 years without medical advances and lifestyle changes What Else Could It Be? - Another chronic medical condition developing - Depression or other mental health issue - Delirium: acute/rapid onset - Medication: toxicity, interaction, side effects - Undetected hearing loss or vision loss - Severe but unrecognized pain or central acting pain meds - Other things Drugs That Can Affect Cognition: Anti-arrhythmic agents Antibiotics Antihistamines/ decongestants Tricyclic antidepressants Anti-hypertensives Anti-cholinergic agents Anti-convulsants Anti-emetics Histamine receptor blockers Immunosuppressant agents Muscle relaxants Narcotic analgesics Sedative hypnotics Anti-Parkinsonian agents Washington Manual Geriatrics Subspecialty Consults edited by Kyle C. Moylan (pg 15) published by Lippencott, Wilkins & Williams, 2003 5

Cognitive Changes with Aging: -Normal changes: more forgetful and slower to learn -MCI: Mild Cognitive Impairment: Immediate recall, word finding, or complex problemsolving difficulties (½ of these folks will develop dementia in 5 yrs) -Dementia: Chronic thinking problems in > 2 areas -Delirium: Rapid changes in thinking and alertness, seek medical help immediately -Depression: Chronic unless treated, poor quality of life, I don t know or I just can t responses, no pleasure, can look like agitation and confusion Not Normal Changes Starting: - Inconsistent - Worse when tired or sick OR in unfamiliar or uncomfortable setting MCI: - The beginning of NOT NORMAL cognition -Memory -Language -Behavior - Motor skills - Not life altering, but definitely different from others perspective 6

Mimics of Dementia: Depression/Anxiety: can t think can t remember not worth it loss of function mood swings personality change change in sleep Delirium: swift change hallucinations delusions on and off responses infection toxicity dangerous Dementia Delirium Depression What s What? What s What For Each D: - Onset - History and Duration - Alertness and Arousal - Orientation responses - Mood and Affect - Causes - Treatment for the cause/condition - Treatment for the behavioral symptoms 7

Delirium: - Onset: sudden, hours to days - Duration: very short, either cured or dead - Alertness and Arousal: fluctuates, hyper or hypo - Orientation responses: highly variable - Mood and Affect: highly variable - Causes: physiological, physical, psychological - Tx condition: ID and Treat what is WRONG - Tx behavior: manage for safety only, short term only, don t mask symptoms Depression/Anxiety: - Onset: recent: weeks to months - Duration: until treated or death, months-years - Alertness and Arousal: not typically changed - Orientation responses: I don t know or I can t say or Why are you bothering me with this? or I don t care - Mood and Affect: flat, negative, sad, angry - Causes: situational, seasonal or chemical - Tx of condition: meds, therapy, physical activity - Tx of behavior: schedule and environmental support, help, combined with meds Dementia: - Onset: gradual, months to years - Duration: progressive until death - Alertness and Arousal: gradual changes - Orientation responses: right subject, but wrong info, angry about being asked, or asks back - Mood and Affect: triggered changes - Causes: brain changes, 60-70 types - Tx of condition: chemical support with AChEIs and glut mod - Tx behavior: environment, help, activity, drugs 8

Determine First Is this Dementia, Depression, OR Delirium? - Delirium can be dangerous and deadly - Get a good behavior history and look for change - Assess for possible pain or discomfort - Assess for infections - Assess for medicine changes or side effects - Assess for physiological issues: dehydration, blood chemistry, O 2 sat Second, Is it Dementia or Depression/Anxiety? - Depression/anxiety is treatable - Many elders with depression/anxiety describe themselves as having memory problems or having somatic complaints - Look for typical and atypical depression - Look for changes in appetite, sleep, selfcare, pleasures, irritability, can t take this, movement, schedule changes The Real Three D s and an A: Dementia Depression Anxiety Delirium 9

Reality: - It s not 3 clean or neat categories - The 3 are mixed together - Which D is causing what you are seeing NOW? - Are all three D s being addressed? - Immediate - Short-term - Long-term If it Looks Like Dementia: - Explore possible types and causes - Explore what care staff and family members know and believe about dementia and the person - Determine stage or level compared with support available and what we are providing - Seek consult and further assessment, if documentation does NOT match what you find out Old: MMSE Screening Options: New: - AD-8 Interview - SLUMS: 7 minute screen - SAGE: self-administered -Animal fluency: 1 minute # of animals - Clock Drawing: 2 step - Full Neuropsychological testing panel 10

AD8 Dementia Screening Interview: - Does your family member have problems with judgment? - Does your family member show less interest in hobbies/activities? - Does your family member repeat the same things over and over? - Does your family member have trouble learning how to use a tool, appliance, or gadget? - Does your family member forget the correct month or year? - Does your family member have trouble handling complicated financial affairs? - Does your family member have trouble remembering appointments? - Does your family member have daily problems with thinking or memory? - Scores: Changed, Not Changed, Don t Know Animal Fluency: - Name as many animals as you can - Give one minute, but don t highlight time limit - Count each animal named (not repeats) - Establish Baseline versus Normal/Not Normal -12 normal for > 65 and 18 for <65 -Compare you to you over time Clock Drawing: - Give a BIG circle on a blank sheet of paper - Ask to draw the face of a clock and put in the numbers - Watch for construction skills and outcome - Ask to put hands on the clock to indicate 2:45 - Watch for placement and processing - Scoring: 4 possible points -1-12: used correct quadrants, minute hand correct, hour hand correct 11

SLUMS: - Orientation: day of week, month, state (3) - Remember 5 items: ask later (5) - $100 buy apples $3 and Trike $20: What did you spend? What is left? (2) - Animal fluency (0-3) (<5, 5-9, 10-14, >14) - Clock drawing: numbers in place, time right (4) - Number reversals: you say 48, they say 84 (2) - Shapes: identify correctly which is largest (2) - Story recall: recall of info from a story 4?s (8) SLUMS Rating: High School Education: 27-30: Normal 21-26: MNCD (MCI) 1-20: Dementia Less than High School: 25-30: Normal 20-24: MNCD (MCI) 1-19: Dementia Trail Making 8 I 10 9 B 4 D H 3 7 1 12 C G 5 J L 2 A K F 6 E 11 12

Dementia: What Changes? - Structural changes: permanent - Cells are shrinking and dying - Chemical changes - variable -Cells are producing and sending less chemicals -Can shine when least expected due to a chemical rush Dementia does not equal Alzheimers does not equal Memory problems DEMENTIA Alzheimer s Disease Young Onset Late Life Onset Vascular Dementias (Multi-infarct) Lewy Body Dementia Diffuse LBD Parkinsonian type dementia Fronto- Temporal Lobe Dementias Other Dementias Genetic syndromes Metabolic pxs ETOH related Drugs/toxin exposure White matter diseases Mass effects Depression(?) or Other Mental conditions Infections BBB cross 13

Four Truths About Dementia: - At least 2 parts of the brain are dying - One related to memory and the one other - It is chronic can t be fixed - It is progressive it gets worse - It is terminal it will kill, eventually Normal Brain Alzheimers Brain Understanding the Different Dementias: One Size Does Not Fit All! 14

Alzheimers: - New info lost - Recent memory worse - Problems finding words - Mis-speaks - More impulsive or indecisive - Gets lost - Notice changes over 6 months 1 year - Lasts 8-12 years Alzheimers: Two Forms Young/Early Onset Late Life Onset Young Onset: - Groups: genetic, Down, head injury, lifestyle - Young family: kids often involved - Mis-diagnosis and non diagnosis is common - Work may be first place to notice - Relationships are strained early, misunderstood - Services are usually a problem - Finances are often problematic - Executive decision making and sequencing diminished 15

Vascular Dementias: -Secondary -Old term is MID -Many variations -CADASIL: genetic Vascular Dementia: - Sudden changes: stepwise progression - Other conditions: DB, HTN, heart disease - So, damage is related to blood supply/not primary brain disease: treatment can plateau - Picture varies by person: blood/swelling/recovery - Can have bounce back and bad days - Judgment and behavior not the same - Spotty loss in memory, mobility - Emotional and energy shifts Vascular Dementia: CT Scan The white spots indicate dead cell areas: mini-strokes 16

Latest Thinking About Vascular Treatment? - Lots of similarity with Alzheimer s - Manage blood flow issues CAREFULLY! - Watch for and manage depression - Visual field changes can be ½ of field - Delays or impulsivity can be extreme Lewy Body Dementia: - Movement problems, falls - Visual Hallucinations: animals, children, people - Fine motor problems: hands, swallowing - Episodes of rigidity, syncopy - Nightmares or insomnia - Delusional thinking - Fluctuations in abilities - Drug responses can be extreme and strange - Can become toxic, can die, can become unable to move - Can have an OPPOSITE reactions 17

Latest Thinking about Lewy Body Treatment: - Try AChIs: Start Low and Go Slow - Then try Namenda early: Start Low and Go Slow - Be VERY careful about anti-psychotic meds: not Haldol - Balancing movement losses and aid to function: not working? - Parkinson s meds may/may not help movement BUT may make hallucinations and delusions worse - Anti-depressants may be used to help anxiety, sleep, and depression but can increase confusion, movement drowsing - Sleep aids or anti-anxiety meds can cause paradoxical reactions Fronto-Temporal Dementias: - Many types, typically Younger Onset - Frontal: impulse and behavior control loss (not memory issues) - Says unexpected, rude, mean, odd things to others - Disinhibited: food, drink, sex, emotions, actions - OCD type behaviors - Hyperorality - Temporal: language loss - Can t speak or get words out - Can t understand what is said, sound fluent: nonsense words FTDs: - FvFTD: frontal variant of FTD - FTD: frontal-temporal lobe dementia - TLD: non-fluent aphasia - TLD: fluent aphasia - CTE: chronic traumatic encephalopathy 18

FvFTD: Mis-behavior Impulsivity Dis-inhibition Inertia Obsessive compulsive behaviors Inattention Lack of social awareness Lack of social sensitivity Lack of personal hygiene Becomes sexually overactive or aggressive Becomes rigid in thinking Stereotypical behaviors Manipulative Hyper-orality Language may be impulsive but unaffected OR may be reduced or repetitive FTD (Pick s Disease): Frontal Issues: Poor decision making Problems sequencing Reduced social skills Lack of self-awareness Hyper-orality Ego-centric Dis-inhibited food, drink, words, actions OCD behaviors early Excessive emotions Temporal Issues: Reduced attempts to talk Reduced content in speech Poor volume control Public use of forbidden words Sing-song speech Can t understand others words Temporal Lobe Non-Fluent Aphasia: Can t NAME items Hesitant speech Not speaking Worsening of speech production over time Echolalia Mis-speaking Word salad Receptive inability Other skills intact early 25% never develop global dementia 19

Temporal Lobe Fluent Aphasia: Has smooth delivery More nonsense words Word salad May think they make sense Expect rhythm back Fixates on a few phrases Chit-chats if enjoying company Volume control varies: limited awareness of others needs There are frequently 1-2 value words mixed in to speech Picks up on value words they hear they then connect and want to talk more Chronic Traumatic Encephalopathy: - Caused by repeated head injuries or concussions doesn t happen to all - Symptoms - Frontal lobe issues - Temporal lobe issues -Sometimes rapid progression into Alzheimers patterns -Sometimes rapid progression into FTD patterns Pick s Disease: PET Scan 20

What if it doesn t seem to be one of these? - Atypical or other dementias - Mixed picture Other Dementias: - Genetic syndromes: Huntington s Chorea - Alcohol-related: Wernickes or Korsakoffs - Drugs/toxin exposure: heavy metals, pesticides - White matter diseases: MS - Mass effects: tumors, NPH - Depression and other psychological conditions - Infections that cross the blood-brain barrier: C-J, HIV/Aids, Lyme? - Posterior Cortical Atrophy - Progressive Supranuclear Palsy Alcohol-Drug Related Dementia: May be called Wernicke s and Korsakoffs syndrome - Possibly caused by neurotoxicity and/or Vitamin B1 and thiamine deficiency - Common Symptoms - Decreased ability to learn new - Decreased interest in valued activities, people, life - Impaired judgment and decision making - Emotional lability or apathy - Problems with balance and coordination - Problems with social control and behaviors - Problems with initiation and termination 21

Dual Diagnosis: Young Dementia -Underlying psychiatric illness -Diagnosed and treated -Undiagnosed but suspected -Undiagnosed and unrecognized -Newer onset of symptoms of dementia -Diagnosed and treated -Undiagnosed and unrecognized -Undiagnosed but suspected - Can have multiples Mixed Picture: - can start with one and add another - Can have some symptoms and not all - Also can have other lifelong issues and then develop dementia (Down s, Mental illness, personality disturbances, substance abuse) So, You Are Noticing Changes: What Should You DO? Get it assessed: go see the doctor! Evaluate driving abilities 22

Why Bother Getting a Good/Complete Diagnosis? - Future plans - Progression and prognosis -Finances -Health - Being in control - Medications can make a difference in quality of life Building Caregiver Skills and Knowledge - Understand dementia and its progression - Know how symptoms affect behavior - Describe needs connected to behavior - Optimize interaction skills Normal Brain Normal Brain Alzheimers Brain Alzheimers Brain 23

Learning and Memory Learning & Center Memory Hippocampus Center Hippocampus BIG BIG CHANGE Understanding Language BIG CHANGE Hearing Sound Not Changed 24

Sensory Strip Motor Strip White Matter Connections BIG CHANGES Automatic Speech Rhythm Music Expletives PRESERVED Formal Speech and Language Center HUGE CHANGES Executive Control Center: Emotions Behavior Judgment Reasoning Impulse and Emotional Control: Losses: -Becomes labile and 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 25

Vision Center BIG CHANGES What Should Happen When Going to See the Doctor? - Screening of your thinking - Simple ones Animal fluency Orientation and 3 item recall Clock drawing - Short but helpful MMSE SLUMS -Open discussion about who, what when, where, why? If the Screen Indicates Concerns: -Rule out other 2 D s, Look at Meds - Complete work-up and follow up OR - Send for a full neuro-psychological eval -Then follow up with you OR -Refer to a specialist 26

Try to Get A Diagnosis Two possible situations: Aware and cooperative Not aware and not interested or willing Getting a Diagnosis: What Should Happen? What Should NOT? What Should We Do If We Suspect Something Might Be Happening? - Be supportive - Be an advocate - Work out health care support: HC-PoA - Check with a doctor and raise your concern with them - Consider a Neuropsychological Assessment - Consider a specialist: geriatrician, neurologist, gero-psychiatrist 27

When Should You Consider Getting a Second Opinion? -When what we talked about didn t happen -When you feel your concerns have not be heard -When you are not offered options that seem reasonable -When you think or feel that the MD is not skilled enough to do a good job of managing this -When it is an atypical dementia Intervention and Programming to Increase: - Physical activity - Mental activity - Social activity - Spiritual involvement - Well-being and self-worth - Minimize risky, challenging, or dangerous behaviors - Reduce anxiety or distress Latest Thinking About Risk - Mental activity - Aerobic activity - Enough vitamins E and C - Heart Smart Diet - Omega 3 fatty acids - Lower weight - Not smoking - Avoiding head injuries - Getting enough sleep - De-stressing Reduction: - Statins (if needed) - NSAIDS (if needed) - Keeping iron in limits - Keeping homocysteine right: Vitamin Bs - Staying socially active - Getting depression treated - Control diabetes better - Control hypertension better 28

Driver Evaluators: -Take care of yourself - Understand the symptoms and progression -Skills in support and care - Skills in communication and interactions - Understand the condition - Identify and use resources -Set limits for yourself Support Groups For: - People with various types of dementia - Caregivers by dementia type -Family members by dementia type -Those grieving the loss of the person they have cared for Community Resource Development: -Programs - Volunteers -Funding -Options 29

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 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! Dementia Can Be Treated: - With knowledge - With skill building - With commitment - With flexibility - With practice - With support - With compassion 30

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