Driving Under the Influence of Dementia. What to Do and NOT Do About It If You Want to Help Well

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1 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 Driving Under the Influence of Dementia What to Do and NOT Do About It If You Want to Help Well 1

2 Driving is typically viewed by most adults as a civil right and symbol of adulthood and autonomy What is Behind that Sense of Privilege? - We develop the skill and receive the license during the transition of kid to teenagers - We maintain our license by checking in and screened episodically: - Getting eyesight checked - Ability to recognize signage noted - Ability to verbally indicate a knowledge of the rules - Not having had a major neurological event or seizure for a period of time - Occasionally retesting on the road if medically indicated - Not DUI So what are we missing? 2

3 What Does the PLwD Believe About Abilities? - Aware of changes making driving risky or different - Unaware of changes making driving risky or different - Existing driving habits and routines are matched to needs - Existing habits and routines are not matching all needs for transportation What do Family/Friends Believe About Abilities? - Aware of changes making driving risky or different - Unaware of changes making driving risky or different - Existing driving habits and routines are matched to needs - Existing habits and routines are not matching all needs for transportation What do Medical Advisors (and others) Believe About Abilities? - Aware of changes making driving risky or different - Unaware of changes making driving risky or different - Existing driving habits and routines are matched to needs - Existing habits and routines are not making all needs for transportation 3

4 What Alternatives Exist? - What options for transportation are available? - What skills are needed to access and use the alternatives? - How do these services impact selfdirected lifestyle, long-term roles and responsibilities, safety, and income? - How acceptable/unacceptable are these alternatives to the PLwD? Who is a Friend and Who is an Authority Figure for the PLwD? - Change will be difficult, if driving plays a major role in daily life - Support will be needed - Guidelines will probably require monitoring and boundaries that are deemed reasonable and based on some norms or value-based system Brain Changes: Dementia: Type(s) Awareness Delirium Note GEM Level(s): Changed abilities Retained abilities Variability Self-awareness Onset & duration The Person: Past & Present Life story history Personality traits Preferences likes/dislikes Key values Joys & Traumas Roles Watch-Talk-Do Wellness, Health, and Fitness: Health Conditions & Physical Fitness: Fuel & Fluids Meds & Supplements Emotional & Psychological Condition Sensory Systems Function Health Beliefs of Note Recent Changes- Acute Illnesses The Environment: Explore the Four Fs: Friendly Familiar Functional Forgiving Space (intimate, personal, public) Sensations (see, hear, feel, smell, taste) Surfaces (sit, stand, postrate, work) Social (people, activity, role, expectations) People - US: Care Partner & Others Around History - background Awareness Knowledge Skills Competence Relationship(s) Agenda(s) Time: Time Awareness: where in life time of day passage of time Four Categories: (balance) Productive: gives value Leisure: Fun playful Wellness & Self Care Restorative: calm recharge 4

5 Plan Ahead Head First How Introvert Go with the Flow Heart First Why Extrovert Introvert Wants ALONE think/feel time Wants to think it out inside Sensitive to space/boundaries Wants to control access to space and belongings Likes privacy Keeps home/work separate Wants prep time before doing Tends to internalize & self-rate Gets quiet & retreats when stressed or distressed Wants a sense of control Answers tend to be final How To Do It Wants to know how to do something before doing it Likes specifics & checklists Likes directions to follow Finds comfort in the familiar & the routine Wants expectations clearly spelled out Likes facts & evidence before doing New learning increases anxiety until it is routine Logic/Reason First Wants it to be FAIR & Equal Likes everyone to be judged under one set of rules May see individualization as favoritism Likes to solve problems Enjoys being right Tends to explore conflict Likes & wants information Wants data to analyze Seeks to understand the reason behind the behavior Plan Ahead Wants to PLAN ahead & follow the PLAN Uses schedules & lists Aware of time & its passing Works toward deadlines Wants a detailed plan to stay on target Becomes anxious with last minute changes Likes final decisions & finishing projects Focus: Looking ahead what s next? Extrovert Wants PEOPLE time Wants to explore with others Thinks out LOUD Asks questions Wants talk time to talk it through & to prep WITH another person Boundaries are flexible Space is to be shared Connection trumps control Seeks others approval & opinion Talks more & seeks more intimacy when stressed Why To Do It Wants to know why something is being done before doing it Belief in the value is critical Wants the big picture Details tend to be boring Likes to try it out and see what happens Likes to try variations not just repeat Drill practicing is NOT exciting Is excited & energized by new learning Feelings First Wants it to feel OK to all Wants harmony in the space Seeks to find common ground Likes when everyone is comfortable with decisions Monitors opinions/feelings Enjoys being kind & helpful Likes to lift spirits Feels case by case is better than a standard rule Seeks to appreciate the emotions behind behavior Go with the Flow Works in the moment Limited awareness of the passage of time Flexible with time and plans Deadlines are suggestions of when to get going or get done Final decisions are difficult Drafts are better revisit Re-sets priorities based on new info adaptable Delays allow more input or changes that improve Focus: what s happening now? Is it REALLY a Problem? - There are over 5.3 million American living with dementia - Estimates are that 30-40% still drive - By mid-disease the risk of having an accident while driving much higher than any other situation - More MVA with dementia involved are deadly or result in serious injuries 5

6 Symptoms of Concern: - Getting lost on familiar routes - Slowed reaction time: near misses - Increased errors in turning, changing lanes, backing up, signal light or intersection behaviors, parking, pulling out, distances - Emotional distress: anger or frustration - Multiple fender benders or scrapes - Speed not matching situation: too slow or fast More Symptoms: - Reliance on a co-pilot for directions and info - Warnings or tickets from police - Confusing the brake and gas pedals - Going the wrong way - Drifting over - No noticing signs, pedestrians, signals - Running over curbs or bumping things A Major Indicator that IT IS TIME: Would you let your child or grandchild ride with them? 6

7 Does EVERYONE Who has Dementia Need to Stop Driving Right Away? - Skill and ability should be the main indicator - Other diseases will impact the need - Self-awareness is a factor - Alternate arrangements are critical - Approaching the subject is delicate but vital Positron Emission Tomography (PET) Alzheimer s Disease Progression vs. Normal Brains Normal Early Alzheimer s Late Alzheimer s Child used with permission from Alzheimers:The Broken Brain, 1999 University of Alabama G. Small, UCLA School of Medicine. Brain Changes with Dementia: From Alzheimer s: A Broken Brain Tuscaloosa, AL: Dementia Education and Training Program, 1999 used with permission from Alzheimers: The Broken Brain, 1999 University of Alabama 7

8 Normal Brain used with permission from Alzheimers:The Broken Brain, 1999 University of Alabama Alzheimers Brain used with permission from The Broken Brain: Alzheimers, 1999 University of Alabama Vision Center BIG CHANGES used with permission from Alzheimers: The Broken Brain, 1999 University of Alabama Normal Brain used with permission from Alzheimers: The Broken Brain, 1999 University of Alabama Alzheimers Brain 8

9 Normal Brain used with permission from Alzheimers:The Broken Brain, 1999 University of Alabama Alzheimers Brain Learning and Memory Center Hippocampus BIG CHANGE used with permission from Alzheimers: The Broken Brain, 1999 University of Alabama used with permission Teepa Snow, from The Positive Broken Approach, Brain: Alzheimers, LLC to be reused 1999 University only with permission. of Alabama used with permission from The Broken Brain: Alzheimers, 1999 University of Alabama Understanding Language Teepa Snow, Positive BIG Approach, LLC CHANGE to be reused only with permission. 9

10 used with permission from The Broken Brain: Alzheimers, 1999 University of Alabama Hearing Sound Not Teepa Snow, Positive Changed Approach, LLC to be reused only with permission. Sensory Strip Motor Strip White Matter Connections BIG CHANGES Automatic Speech Rhythm Music Expletives PRESERVED Formal Speech and Language Center HUGE CHANGES used with permission from The Broken Brain: Alzheimers, 1999 University of Alabama What should be done? According to some dementia authorities: - Driving_and_Dementia.pdf - t/27/driving/2 - a-driving-do-not-mix#1 used with permission from Alzheimers: The Broken Brain, 1999 University of Alabama 10

11 More ideas and controversy: used with permission from Alzheimers: The Broken Brain, 1999 University of Alabama What Can Be Done? - Ask the doctor to help - Ask other authority figures to help - Ride with the person check it out - Ask another objective person to ride along - Begin to look at options for getting places Specifics to Check: - Assess driving skills - Screen thinking and reasoning skills - Screen speed and reaction time skills - Screen vision and visual processing skills - Screen emotional reactions to mistakes/errors - Screen motor skills 11

12 Options for Testing: - MD office screens - DMV testing - Driving schools or instructors - Outpatient clinic OTs - AARP sponsored clinics -??? Trail-Making Screen: - Trace a path without picking up your pen - Start with A then go to 1 then back to the next letter in the alphabet and then the next number, etc. - Keep track of time - < 65 should be done in <1 minute - > 65 should be done in < 2 minutes 6 B E 5 A K 3 D H 11 9 C I J F G 12

13 Trail Making: 1 minute or less GREAT!!! More than 2 minutes BAD NEWS!!! What Then? - Screening for reaction speeds - Visual field function - Visual scanning function - Depth perception awareness - Visual-motor integration Challenges? - No national or state-wide guidelines for dementia-related conditions that are ability based - Medical advisor decides yes/no -with or without support, details, or driving data - without a clear treatment/follow-up plan - without a monitoring system in place -without full consideration of impact on daily life for all involved 13

14 If the Person Does All Right : - Keep monitoring - Gradually start reductions -Limit distractors in the vehicle -Limit times and places and routes -Select times of day -Begin switching roles some times - Start looking for alternatives - Re-check skills every 6 months If There Are Problems: - Get help to THINK it thru before you DO anything - THINK it all thru first - THEN raise the concern - How to raise the concern will vary based on the person Driving Skill is Complex: - Multi-factorial - Personality and person history - Other medical and sensory conditions -Type and level of dementia - Environmental demand - Care partners behaviors and skills -Flow of the day and routines 14

15 Personality Traits: Who are you? - Introvert - Extrovert - Lots of Details Big Picture only - Logical Emotional - Planning Ahead Being in the Moment Who is the person you are trying to help? Introvert Extrovert: Introvert Likes to be alone Likes to think it out Likes personal space Needs alone time Private Extrovert Think out loud Talk it out Seek out people Share a lot Not good with boundaries Details Big Picture: Details Lots of facts and figures Specifics of what to do Likes to get going - doing Big Picture Likes to know WHY Likes to think about it before doing anything Likes to hear the big plan 15

16 Logical Emotional: Logical Head First Fair Reasonable Rational Emotional Heart First Nice Kind Empathetic 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 Should We Talk About IT with the Person? Yes, Probably, But: - Who matters - How matters - When matters - Where matters - AND What you say matters 16

17 How to Talk About It: - Look for values that the person has - Ask questions first get their thoughts - Use empathy and validate their feelings - Suggest an objective way of checking - Think through options or alternatives for getting places - Start early before it is really an issue If the Person Won t Stop: - Get help, if the public is at risk - Try not to be the bad guy - Remove visual cues related to driving - Provide alternatives - Let authorities know and seek their help DISCLAIMER The content contained in this presentation is strictly for informational purposes. Therefore, if you wish to apply concepts or ideas contained from this presentation you are taking full responsibility for your actions. Neither the creators, nor the copyright holder shall in any event be held liable to any party for any direct, indirect, implied, punitive, special, incidental or other consequential damages arising directly or indirectly from any use of this material, which is provided as is, and without warranties. Any links are for information purposes only and are not warranted for content, accuracy or any other implied or explicit purpose. This presentation is copyrighted by Positive Approach to Care and is protected under the US Copyright Act of 1976 and all other applicable international, federal, state and local laws, with ALL rights reserved. No part of this may be copied, or changed in any format, sold, or used in any way other than what is outlined within this under any circumstances without express permission from Positive Approach to Care. Copyright 2017, All Rights Reserved Teepa Snow and Positive Approach to Care 17

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