What Does It Mean? What Does It Take?

What Does It Mean? What Does It Take?
PAC Consultant What Does It Mean? What Does It Take?

What Do PAC Certified Independent Consultants Do?
PAC Mentor Skilled in multiple roles and serves as the main support for others as they work towards competency Preceptor Works within an acute care setting to build awareness and skill for teams Coach Builds new Knowledge and Skills into habits for Competence and integrated practice. Trainer Provides learners with new Awareness and Knowledge - introduces new Skills. Consultant Provides families and agencies with Awareness and Knowledge - identifies Skills needed. Engagement Leader Provides the supportive structure, expertise, guidance, and schedule that enables all involved to thrive and live well in the presence of dementia when resources are available, used wisely, and used well.

What Do PAC Certified Individuals Do?
Trainers: Use their skills to help turn unawareness into awareness, knowledge, and intro skills Coaches: Use their skills to help turn knowledge into skills and build skills into competence Consultants: Use their skills to help turn unawareness into awareness, introduce the value of knowledge and skills in order to change the status quo Engagement Leaders: Use their skill to help others gain awareness, knowledge and skill to fill days with value and meaning Speakers: Use their skills to introduce new awareness to various audiences and learners Mentors: Use their skills to help others gain awareness and knowledge to build skill and competence

Becoming Competent Skill Knowledge Awareness Unaware

Ta-Da!!!! Ah-Ha Ah! – Ohhh! Oh – Uh-Oh Dadum, Dadum, Dadum

How We Develop Skills: -Unaware: Not ready/not noticing -Novice/Aware: Becoming Aware and gaining Knowledge while trying out Skills -Proficient: Using Knowledge and core Skills to assist others in a chosen role, Awareness that more is possible -Accomplished: Gaining more Skill and focused on using Awareness, Knowledge, and Skill to improve self and aid others -Master: Using developed Abilities to assist others in their development

Proactive Consulting: Five Steps to Supporting Change
Tab 3, Page 13

PAC Coaching Cycle: Five Steps to Build Skills
Tab 3, Page 13

PAC AELC Training Cycle:
Tab 3, Page 13

PAC Engagement Leader:
Building Blocks 1. Know each PERSON! 2. Understand ACTIVITIES! 3. Make and use a SCHEDULE! 5. Build stakeholder SKILLS! 4. Manage the ENVIRONMENT! 6. Resources to Succeed! Tab 3, Page 13

PAC Levels: Where are you?
Unaware Novice/Aware Proficient Accomplished Master

PAC Consultants Help Others:
Assess how they are doing Recognize the value and need for change Identify possible choices Make choices Get themselves organized and make a plan Get started: initiate Make progress: sequence to move forward Finish the process: terminate Let go and move on See things differently and do something about it Tab 3, Page 5

Characteristics of a PAC Consultant:
-Stays curious about the facts and the people -Able to grow personal skills and knowledge around Positive Physical Approach™ (PPA), Hand-under-Hand® (HuH), and dementia -Able to adapt PPA™ to meet the needs of others -Willing to make mistakes, admit them, and learn from them -Self-aware as well as self-assured -Emotionally Intelligent -Able to recognize GEMS® states and be willing to help -Able to authentically apologize for situations in which someone perceives you to be at fault, even when you did not do anything wrong! -Equally committed to process and product -Agenda aware and agenda flexible -Able to find balance between encouragement and holding people accountable Tab 3, Page 8

PAC Consultants Use: Teepa’s Six Pieces of the Puzzle to solve challenging situations with brain change Assessments, not assumptions Supportive communication strategies Information gathering from multiple sources Active listening and responsive behaviors ‘Go with the Flow’ strategies to connect, reflect, and redirect - Person-centered approaches to all care plans and delivery PPA™ when communicating with others What is possible, after recognizing what is not – GEMS® Tab 3, Page 7

Competencies to be Demonstrated for Certification: Page 1
PAC Consultants must be able to: Interact with an individual in distress using PPA™ Respond instead of react Create a connection with the individual Use active listening and supportive communication skills Generate forward and productive thinking and action Accurately and effectively recognize: State of grief and emotional distress Possible unmet needs being expressed Personality traits GEMS® state(s) Proactively explore a possible issue Use the Six Pieces of the Puzzle to address and solve a problem Work well with individuals or within a team when facing a challenging situation Tab 3, Pages 5-6

Competencies to be Demonstrated for Certification: Page 2
PAC Consultants must be able to: Guide and support the development of person-centered care plans that support retained abilities Foster the development and use of knowledge and skill of the people involved in the care Provide opportunities for learners to provide meaningful time use throughout the progression of the condition. Acknowledge limitations and changing abilities Promote positive relationships and engagement Modify his/her approach to match the needs and preferences of the person/people being assisted His/Her interactive style, cueing process, positioning, and language Modify the environment to help meet the needs of the individual Show self-awareness in interactions Use reflective skills to process feedback Integrate what s/he has learned in future interactions Tab 3, Pages 5-6

Part 2: Communication Techniques What Causes Challenging Situations?
The Person and Their Dementia!?

Look Again: What Makes Situations Happen?
Six Pieces: The Person: Personality, preferences, and history Health, Wellness, and Fitness: Other medical conditions, sensory status, and medications Brain Changes: The type and level of cognitive impairment now The Stakeholders: People: how the helper helps and their approach, behaviors, words, actions, and reactions The Environment: Setting, sound, sights Time: The whole day and how things fit together Tab 3, Page 19

What Do We Mean By ‘Situations’?
List situations you get asked about: Crises! Problems! Behaviors!

Examples of Challenging Situations:
No financial/health care Power of Attorney Losing Important Things Getting Lost Unsafe task performance Repeated calls and contacts Refusing Bad mouthing you to others Making up stories Resisting/refusing care Swearing/cursing, sex talk, racial slurs, ugly words Making 911 calls Mixing day and night No solid sleep time or sleeping all of the time Not following care/rx plans No initiation Perseveration Paranoid/delusional thinking Shadowing Eloping or Wandering Seeing things and people Getting into things Threatening caregivers Undressing in public Not changing clothes or bathing Problems w/intimacy & sexuality Being rude Feeling sick Use of drugs or alcohol to cope Striking out at others Falls and injuries Contractures and immobility Infections and pneumonias Problems eating or drinking

Top Five Human Needs and Emotional Indicators of Distress
Five Expressions of Emotional Distress Five Human Needs Angry irritated – angry – furious Sad dissatisfied – sad – hopeless Lonely solitary – lonely – abandoned/trapped Scared anxious – scared – terrified Lacking Purpose disengaged – bored – useless Intake Hydration, nourishment, meds Energy Flow tired or revved up directed inward or outward Output Urine, feces, sweat, saliva, tears Comfort 4 Fs and 4 Ss Pain-Free!!! Physical, emotional, spiritual Talk through positives and changes to make with basic PPA and getting connected. What about when there is distress – what might be causing it? Review Emotional distress covering Physical needs – connect back to amygdala. Break-out with unmet need in groups of 3.

To Communicate When Someone is Distressed:
First, connect with PPA™ Then, try Supportive Communication Finally, move together to a new place or activity

Be a Detective, Not a Judge!
To Communicate: Be a Detective, Not a Judge! Try to figure out what is being communicated: Words Thoughts Actions Needs Beliefs Don’t assume or presume Don’t discount the message because of how it is delivered Tab 3, Page 16

To Communicate and Figure it Out:
Supportive Communication: Empathy Validation Exploration Acknowledgement Move Forward: New words New place New Activity/Focus Connect: Visually Verbally Physically Emotionally Individually How? PPA™ Supportive Communication Tab 3, Page 19

So Now… You are connected Visually Verbally Tactilely Next:
Connect emotionally Go with their flow Don’t block or try for reality orientation Don’t direct or lie Tab 3, Page 17

To Connect Emotionally:
Send visual signal of connection: Match their emotion and look concerned Send a verbal signal of connection: Use the right tone of voice Send a physical signal of connection: Give a light squeeze or sandwich the hand Offer an open palm on their shoulder or back Offer a hug if the person is seeking more contact Tab 3, Page 17

Use Supportive Communication:
Repeat a few of their words with a question at the end Listen, then: Offer empathy: “Sounds like… “Seems like… “Looks like… Avoid confrontational questions Use just a few words Go slow Use examples Fill in the blanks Listen! Tab 3, Page 18

More Supportive Communication:
Validate emotions Early in dementia: “It looks like you are (emotion)” or “It sounds like…” “I’m sorry this is happening to you” “This is hard… you are not liking this at all.” Midway in dementia: repeat their words, with emotion Listen for added info, ideas, thoughts Explore new info by watching and listening Late in dementia: check out the whole body: Face, posture, movement, gestures, touching, looking Look for need under the words or actions

Once Connected and Communicating:
Move forward: Add new words Move to a new place/location Add a new activity Early – Redirection Same subject Different focus Later – Substitution (Distraction) Different subject Unrelated but enjoyed

For All Communication:
If what you are trying is not working: Stop Back off Think it through, then: Re-approach Try something slightly different

What If There Are No Words?
Observe their cues to you Visual Auditory Touch and movement – or lack of it Olfactory: any unusual smells or odors Taste: changes in eating/drinking/preferences Use your other cueing systems Make your cues bigger and simpler and slower

What Shouldn’t We Do? Argue Make up stuff that is not true
Ignore problem behaviors Try a possible solution only once Give up Let them do whatever they want to Force them to do it

People with dementia are doing
So What Should We Do? Remember who has the healthy brain! Believe: People with dementia are doing the best they can!

Recognizing unmet needs Helping with words Helping without words
Time to Practice: Recognizing unmet needs Helping with words Helping without words

Understanding and Responding to Challenging Situations and Unexpected Behaviors:
What is happening? Why is it happening? What helps? What makes it worse/better? What can we do to make it better? How can we prevent it in the first place?

Why Is Life So Difficult for Those Involved?
Many abilities are affected: Thoughts Words Actions Feelings It is variable: Moment to moment Morning to night Day to day Person to person Place to place Some changes are predictable but complicated: Specific brain parts Typical spread Some parts preserved It is progressive: More brain dies over time Different parts get hit Constant changing

Match these situations = behaviors with possible brain changes
Why do families, professionals, and people living with dementia need help?

Examples of Challenging Situations:
No financial/health care Power of Attorney Losing Important Things Getting Lost Unsafe task performance Repeated calls and contacts Refusing Bad mouthing you to others Making up stories Resisting/refusing care Swearing/cursing, sex talk, racial slurs, ugly words Making 911 calls Mixing day and night No solid sleep time or sleeping all of the time Not following care/rx plans No initiation Perseveration Paranoid/delusional thinking Shadowing Eloping or Wandering Seeing things and people Getting into things Threatening caregivers Undressing in public Not changing clothes or bathing Problems w/intimacy & sexuality Being rude Feeling sick Use of drugs or alcohol to cope Striking out at others Falls and injuries Contractures and immobility Infections and pneumonias Problems eating or drinking

Without Help, What Do We Tend to Do?
We miss early signals We react or overreact We wait to see if it gets worse We worry We ignore it or put up with it… until….

What If We Categorize: Annoying: not a big issue, but wearing over time and takes time away from other responsibilities Risky: could cause harm to self or others, not always dangerous, but can be unpredictable as to when it will be serious Dangerous: puts the person, the Care Partner, other people, or equipment in jeopardy or at immediate risk for injury Tab 3, Page 18

We Tend To… - Dig into the Dangerous Behaviors - Try to care plan or respond to the Risky Behaviors when we see them - Expect or put up with the Annoying Behaviors until… Tab 3, Page 18

Part 3: The Six Pieces of the Puzzle: How Did We Get Here?
What is Driving this Situation?

Six Pieces of the Puzzle:
Brain Changes The Environment The Person Stakeholders Wellness, Health, and Fitness Time Tab 3, Page 19

Six Pieces of the Puzzle
Brain Changes Dementia, Delirium, or Depression? Dementia Type(s) Alz, FTD, VaD, LBD, usually more than one PLwD’s awareness of their brain change Fully aware, somewhat aware, unaware, aware but covering Note GEMS® level(s) Changed abilities and retained abilities Variability – time of day, situation Onset and duration The Environment Four Fs and Four Ss Four Fs – is the area… Friendly – are there people she knows? Familiar – does she know the area? Functional – is she able to do what is needed? Forgiving – is she allowed to make mistakes? Four Sx – how will he/she interpret… Space – Intimate, personal, public Sensations – See, hear, feel, smell, taste Surfaces – Sit, stand, lie down, work Social – People, activity, role, expecations The Person Past and Present Life Story Where did he live when younger? What did, or does, he do for a living? What hobbies or activities does he enjoy? Personality Traits Personal preferences – likes and dislikes Key values in life Roles Does he prefer to watch, talk, or do? Stakeholders Care Partners and Others Personal history with the person – Background Awareness – What do they know about the person’s health? Knowledge – What do they know about dementia? Skills – Do they have the skills to work with a PLwD? Competency – Can they put the PLwD first in everything they do? Relationship – Personal, professional, family, other Agenda – Why is the person here? Wellness, Health, and Fitness Health Conditions and Physical Fitness Fuel and Fluids Medications and Supplements Emotional and Psychological Condition Sensory Systems Function Health Beliefs of Note Recent Changes – i.e. Acute Illness Time Where in life is the person? What time of day is it? How long has passed for the person? Four Categories of Time Productive – gives value Leisure – fun, playful Wellness and Self-Care – brain and body Restorative – calm, recharge Six Pieces of the Puzzle

First Piece of the Puzzle:
The Person and who they have been: Personality Preferences History Job/Duties Tab 3, Page 20

Lifelong Personality Traits and Preferences Make a Difference:
We are more of who we have always been, unless: We have always been covering up who we really are and we decide to let go or Dementia robs us of our ability to be the way we want to be Dementia causes us forget how we are supposed to be and lets us be free Tab 3, Page 20

Personal Preferences Matter:
We like what we like! With dementia, the likes can change Old preferences will need to be revisited The challenge is to honor what is important but change what is needed Our willingness to meet the person’s changing needs is essential Changes are made harder by our sense of loss and grief

Some Personal Preferences:
Appearance Behaviors Language Daily routines Foods and drinks Music Touch, textures, noise, and space Worship: spiritual practices

How Does Dementia Affect This?
Memory Language: understanding and production Self-care skills Sensation Emotional control Reasoning and thinking Vision

How might this work with you?
The Person: How might this work with you? Personality Traits Multiple Intelligences Adult Experiential Learning Cycle Using the information to connect

Who is the person you are trying to help?
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?

With Personality Traits: Some stuff we think/feel people do on purpose… Is really just who they are!
Tab 3, Page 20

Personality Traits: INTROVERT EXTROVERT HOW WHY HEAD FIRST HEART FIRST
PLANS AHEAD LIVES IN THE MOMENT

Introvert Extrovert How Why Head First Heart First Plans Ahead
Needs time alone to think and feel Will tend to self-assess Processes internally: likes a sense of control May become quiet or retreat under stress Benefits from preparation time Decisions tend to be final Likes privacy and personal space Needs boundaries: keeps home/work separate Extrovert Needs time with others to explore thoughts/feelings Benefits from collaboration Will seek approval and opinions of others Spending time with people reenergizes Will think out loud and ask questions Likes intimacy: prefers to share space Boundaries are flexible: seeks work/life balance Processes externally: connection trumps control How Wants specific instruction before doing Needs clear expectations Likes details, checklists, facts, evidence Prefers to follow directions Finds comfort in the familiar Benefits from routine New learning increases anxiety Why Wants to understand big picture before doing Needs to try things out Isn’t concerned with details Prefers to discover Finds pleasure in the process Benefits from belief in the value of things New learning excites and energizes Head First Logic and reason are top priority Needs things to be equal One set of rules applies to all: black/white Problems have a single right answer Requires facts and information May analyze situations or conflicts Seeks to understand the reason behind the behavior Heart First Is concerned about the feelings of all involved Needs harmony between people Rules are to be interpreted: shades of gray Desires to understand the cause of a problem Will attempt to monitor all opinions/feelings Enjoys being helpful and lifting spirits Sees to appreciate the emotions behind the behavior Plans Ahead Needs a plan/schedule to follow Always on time: meets deadlines Likes time management tools Wants a detailed plan and will follow it Last minute changes may cause distress Enjoys making decisions and finishing projects Places attention on what’s coming next Lives in the Moment Needs to go with the flow Time management can be a challenge Likes exploring options: adaptable New information can cause a change in priority Too much structure may distress: needs flexibility Has difficulty making final decisions Places attention on what’s happening now

Which Traits are Better?
There is No ‘Better’ Just Different Just Ranges

How Do People Learn? With Multiple Intelligences Using a Learning Cycle It’s not how smart you are, it’s how you are smart!

Multiple Intelligences: How Do You Learn?
Verbal/Linguistic: word smart Spatial/Visual: picture smart Logical/Mathematical: number/puzzle smart Bodily/Kinesthetic: body smart Musical/Rhythmical: music smart Interpersonal: people smart Intrapersonal: myself smart Naturalistic: nature smart Existential: big picture smart

Verbal Linguistic Learners:
Likes words, reading, and stories Uses handouts, case studies, etc. Books and journaling may help

Visual Spatial Learners:
Like pictures and movies Try short videos, graphics, pictures Organized handouts Charts and graphs

Logical/Mathematical (intuitive) Learners:
Like to think about problems and figure things out Like to be asked questions, needs to get to answer

Bodily/Kinesthetic Learners:
Like to handle objects while learning Like to practice and do things

Musical/Rhythmic Learners:
Like music singing, rhythm Use poems, songs, rhymes

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!

To the tune of This Little Light of Mine
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 gettin’ it done I’m gonna do with you No more just gettin’ it done I’m gonna help you through No more just gettin’ 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!

Progression of the Condition
To the tune of This Old Man The LIVING GEMS®

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.

Interpersonal Learners:
Like talking and sharing with others Use group activities, discussion

Intrapersonal Learners:
Likes thinking to self Use independent projects

Naturalistic Learners:
Likes categories of information: if not already in categories, s/he will categorize it Likes working with animals, plants, and nature Gets patterns and differences

Existential Learner: Likes to hear about and see the ‘big picture’
Relates new learning to theories and other real world experiences

Know Thyself: The rule of 3 Most people are:
Really good at three intelligences OK at three intelligences Not good with three intelligences How to use this Know your own preferences Identify the types of learners you work with Integrate strategies

How Do We Learn? Using the AELC in Consulting
The learner has an experience: it will involve some element of PAC awareness, knowledge, or skill The learner and consultant review the experience: using a variety of interactive, learning, and cueing strategies that meet the learner’s needs The learner and coach process through the value and meaning for skill development The coach shares some principles, examples, other info to help the learner ‘connect the dots’ The learner tries it out and gets affirming or modifying feedback

Adult Experiential Learning Cycle:
Tab 3, Page 13

Experience - Activity Start by doing something!
This can be actively doing, watching others, responding to a case study, or completing a pen and paper task

Share reactions and observations:
Share – Notice Things Share reactions and observations: What happened? What did you think, see, feel, notice, hear?

Process – Think out Loud
Look for Patterns and Relationships: Why do you think that happened? Were there similarities? Were there differences? Did you notice any patterns?

Connect - Generalizing
Connect new to old: Relate experience to theories Connect other pieces of information or knowledge to this situation Help place the new or current event into the big picture I remember something similar happening…

Apply – Do Differently Try out the new idea
Making it happen in life: Try out the new idea Practice what you figured out Make plans for changes in how you do what you do Partner with an experienced person to rehearse and get feedback

What About the Person with Dementia?
They are at home They have needs – how will we help? How can we change the environment to help? Who needs to know this? Tab 3, Page 20

Second Piece of the Puzzle:
Health, Wellness, and Fitness: Other medical conditions Sensory status: Vision Hearing Touch Smell Taste Balance Medications Tab 3, Page 21

Medications: “Any symptom in an elderly person should be considered a drug side effect until proved otherwise.” Gurwitz et al, 1997 “While many of us fear medications, others expect too much.” James R McCartney, 1998

Normal Brain Cells: Once the message is sent, then enzymes lock onto the messenger chemicals and take them out of circulation so a new message can be sent

Brain Cells with Alzheimers:
Less neurotransmitter Further to go to get to the next cell plaques tangles Enzymes (AChE inhibitors) get to them before they deliver their message

What Do Alzheimers Drugs Do?
Alzheimers drugs provide fake messenger chemicals that distract the enzymes. They attach to the fake AChE and the message can get through

Third Piece of the Puzzle:
Brain Changes: What is normal? What is not normal? Is it something else? It’s complicated!!!! The progression of the GEMS® Tab 3, Page 22

Is it dementia? Is it just dementia? Is it dementia plus?
The Three Ds: Is it dementia? Is it just dementia? Is it dementia plus?

Dementia Delirium Depression/Anxiety
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

Determine First: Is this Delirium?
Delirium can be dangerous and deadly Get a good behavior history and look for changes Assess for possible pain or discomfort Assess for infections Assess for med changes or side effects Assess for physiological issues: dehydration, blood chemistry, oxygen saturation

Second: Is it Dementia or Depression/Anxiety?
Depression is treatable Many elders with depression describe themselves as having memory problems or having somatic complaints Look for typical and atypical depression Look for changes in appetite, sleep, self-care, pleasures, irritability, “I can’t take this” statements, movement, schedule changes

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

Screening Options: Old: MMSE New: AD-8 Interview
SLUMS: 7 minute screen Animal Fluency: 1 minute # of animals Clock Drawing: 2-step Full neuropsychological testing panel

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 (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

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: (<5, 5-9, 10-14, >14) (0-3) Clock Drawing: Numbers in place, time right (4) Number Reversals: Tell them 48, they say 84 (2) Shapes: Correct identify which is largest (2) Story recall: Recall of info from a story – 4?s (8)

High School Education:
SLUMS - Rating High School Education: Less than High School: 27-30: Normal 21-26: MNCD (MCI) 1-20: Dementia 25-30: Normal 20-24: MNCD (MCI) 1-19: Dementia

Tab 3, Page 23

Tab 3, Page 24

Four Truths About Dementia:
At least 2 parts of the brain are dying One related to memory and at least one more part It is chronic – it can’t be fixed It is progressive – it gets worse It is terminal – it will kill, eventually Tab 3, Page 22

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

Alzheimers: At Least Two Forms
Young Onset Late Life Onset

Normal Brain Brain with Alzheimers
Used with permission from Alzheimers: The Broken Brain, 1999 University of Alabama

Positron Emission Tomography (PET) Alzheimers Disease Progression vs
Positron Emission Tomography (PET) Alzheimers Disease Progression vs. Normal Brains Normal Early Alzheimers Late Alzheimers Child G. Small, UCLA School of Medicine

Young Onset: 3 groups: genetics, Downs, lifestyle
Young families/kids often involved Misdiagnosis and non-diagnosis is common Work may be first place to notice Relationships are strained early due to misunderstandings Services are usually a problem Finances are often problematic Executive decision making and sequencing reduced

Alzheimers: New info lost Recent memory worse Problems finding words
Misspeaks More impulsive or indecisive Gets lost Notice changes over 6 months-1 year Lasts 8-12 years

Typical Treatment for Alzheimers:
Try an AChEI as soon as diagnosis is made If side-effects are too much, try another one Stay on the AChEI until groups of thought Placement in a ‘facility’ Considering stopping other medication: near the end of the disease Not sure if helping or hurting: taper and see Try Namenda mid-stage disease Stay on Namenda – as above

Normal Brain Cells: Neurotransmitters (AChE)– being sent – message being communicated to the next cell

Normal Brain Cells: Once the message is sent, then enzymes lock onto the messenger chemicals and take them out of circulation so a new message can be sent

Brain Cells with Alzheimers:
Less neurotransmitter Further to go to get to the next cell plaques tangles Enzymes (AChE inhibitors) get to them before they deliver their message

What do Alzheimers Drugs Do?
Alzheimers drugs provide fake messenger chemicals that distract the enzymes. They attach to the Fake AChE and the message can get through Aricept, Exelon, Reminyl (Razadyne)

One Other Dementia Drug:
Memantine - Namenda From Europe - 10 years of research Came multiple years ago to the US Different effect Moderates glutamate absorption Works best in combination with AChE inhibitors Can use it with AChE inhibitors… two actions Keeps the cell from getting so much glutamate in it

Secondary Old term – MID Many variations CADASIL - genetic
Vascular Dementia: Secondary Old term – MID Many variations CADASIL - genetic

Vascular Dementia: Sudden changes: stepwise progression
Other conditions: diabetes, hypertension, heart disease So, damage is related to blood supply and is not primary brain disease: treatment can plateau Picture varies by person (blood/swelling/recovery) Can have bounce back and bad days Judgment and behavior just not the same Spotty loss (memory, mobility) Emotional and energy shifts

Positive Approach, LLC - 2015
Vascular Dementia: CT Scan The white spots indicate dead cell areas cause by mini-strokes Positive Approach, LLC

Latest Thinking About Vascular Treatment?
Lots of similarity with Alzheimers Manage blood flow issues carefully! Watch for, and manage, depression

Lewy Body Dementia: Movement problems, falls
Visual hallucinations: animals, children, people Fine motor problems: hands and swallowing Episodes of rigidity and syncopy Nightmares or insomnia Delusional thinking Fluctuations in abilities Drug responses can be extreme and strange Can become toxic, can die, can become paralyzed Can have an opposite reaction to the drug that is intended

Latest Thinking about Lewy Body Treatment:
Try AChIs but start low and go slow Then try Namenda early and start low and go slow Be very careful about anti-psychotic meds (not Haldol) Balancing movement losses and aid to function Parkinsons meds may/may not help movement, but may make hallucinations and delusions worse Anti-depressants: May be used to help anxiety, sleep, and depression Can increase confusion, movement and 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 Uninhibited with 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, may sound fluent, may use nonsense words

FTDs: FvFTD: frontal variant of FTD
FTD: frontal-temporal lobe dementia TLD: non-fluent aphasia TLD: fluent aphasia

Temporal Lobe Non-Fluent Aphasia:
-Can’t name items -Hesitant speech -Not speaking -Worsening of speech production over time -Echolalia -Misspeaking -Word salad -Receptive inability -Other skills intact – early -25% never develop global dementia

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

FvFTD: Misbehavior Impulsivity Disinhibition Inertia Obsessive compulsive behaviors Inattention Lack of social awareness Lack of social sensitivity Lack of personal hygiene Becomes sexually over- active or aggressive Becomes rigid in thinking Stereotypical behaviors Manipulative Hyper-orality Language may be impulsive but unaffected or may be reduced or repetitive

FTD (Picks Disease): Frontal Issues: Temporal Issues:
Poor decision making Problems sequencing Reduced social skills Lack of self-awareness Hyper-orality Ego-centric Disinhibited: food, drink, words, actions OCD behaviors early Excessive emotions Reduced attempts to talk Reduced content in speech Poor volume control Public use of ‘forbidden words’ Sing-song speech Can’t understand others’ words

PET Scan:

What if it doesn’t seem to be one of these?
Atypical or other dementias Mixed picture

Other Dementias: Genetic syndromes: Huntingtons Chorea ETOH related
Drugs/toxin exposure: heavy metals, pesticides White matter diseases: MS Mass effects: tumors and NPH Depression and other psychological conditions Infections that cross the BBB cross: C-J, HIV/AIDS Parkinsons: 40%

Lots of Other Dementias:
70+ forms, types, causes Some progress very rapidly Some are genetic, some are not Some are unique, some follow more traditional patterns

Mixed Picture: Can have multiples Can start with one and add another
Can have some symptoms - 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 Think About What Needs to Change!

The Real Three ‘D’s: Dementia Depression Delirium

Reality: It is 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

What Could It Be? Another medical condition Medication side effect
Hearing loss or vision loss Depression Acute illness Severe but unrecognized pain 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

Another Complication: Progression
More changes over time Not a stable condition

GEMS® States: Where is the person in the progression?

Review the GEMS®: Sapphires – True Blue – Slower but Fine Diamonds – Repeats and Routines, Cutting Emeralds – Going – Time Travel – Where? Ambers – In the Moment - Sensations Rubies – Stop and Go – Big Movements Pearls – Hidden in a Shell - Immobile

How Do You Go Between Sapphire and Diamond?
Your triggers for going Diamond… Your strategies for regaining Sapphire…

It’s All About Our Amygala!
The Amygdala: Part of our Limbic System Threat perceiver Pleasure Seeker Part of the engine controlled by the Neo-Cortex Two parts: Left Amygdala Right Amygdala

DANGER! Amygdalae Turn On and….. Fight, Flight, Fright

When your primitive brain takes over…
Amygdala in Control When your primitive brain takes over… Left Temporal Lobe- Language and Speech Frontal Prefrontal Cortex- Emotions, Behavior, Judgement, Reasoning Occipital Lobe- Tunnel Vision

When I’m Hurting… I Need Relief My Amygdalae Turns On and…
When I’m Hurting… I Need Relief My Amygdalae Turns On and….. I Need it Now!!!

When we don’t have the help we need, we tend to…
Miss early signals Ignore it or put up with it Wait and see if it gets worse Worry React or overreact instead of responding

Fourth Piece of the Puzzle:
The Stakeholders: People around the person living with dementia Staff Friends Family Everyone who might have an impact Tab 3, Page 25

What Should Stakeholders Avoid?
Arguing Making up stuff that is not true Ignoring problem behaviors Trying a possible solution only once Giving up Letting them do whatever they want to Forcing them to do something

Remember who has the healthy brain!
So What Should We Do? Build and use skills! Remember who has the healthy brain! Believe that people living with dementia are doing the best they can in any given moment!

Remind Others: You Will Make Mistakes!
Learn to recognize your Uh-Ohs! Stop what you are doing! Back off and re-think Possibly change something Try again! Let it go… Forgive yourself: you are human! Tab 3, Page 25

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!

Specifically for Care Partners of Someone Living with Dementia:
You need help from someone who understands You need time truly away: physically, emotionally and spiritually You need to try to listen!!!

“I am who I was, but I’m different!”
Let Go: How it ‘used to be’ How it ‘should be’ How you ‘should be’ “I am who I was, but I’m different!”

Identify: What you’re good at…and what you’re not
Who can help…and how they can help What really matters Not everyone is meant to be a care partner for someone with dementia!

10 Minute Stress Tamers: Sit quietly in calm surroundings with soft lights and pleasant scents. Aromatherapy: lavender, citrus, vanilla, cinnamon, peppermint, fresh cut grass. Breathe deeply: rest your mind and oxygenate Soak: in a warm bath, or just your hands or feet Read: spiritual readings, poetry, inspirational readings, or one chapter of what you like… Laugh and smile: watch classic comedians, Candid Camera, America’s Funniest Home Videos, look at kid or animal photos Stretch: front to back, side to side, and across Garden: work with plants

10 Minute Stress Tamers: Beanbag heat therapy: fill a sock with dry beans and sew or tie closed. Heat bag and beans in a microwave for 30 seconds at a time. Place on tight muscles and massage gently; relax for ten minutes. Remember the good times: record oral memories in scrapbooks, photo journals, keepsake memory picture frames, or just jot! Do a little on a favorite hobby Have a cup of decaffeinated tea or coffee Play a brain game: crosswords, jigsaws, jeopardy, jumbles

10 Minute Stress Tamers: Books on tape: rest your eyes and read
Soothing sounds: music you love, music especially for stress relief, recorded sounds of nature Listen to coached relaxation recordings Pamper yourself: think of what you love and give yourself permission to do it for 10 minutes Neck rubs or back rubs: use the ‘just right’ amount of pressure Hand massages: with lotion or without, it’s up to you Look through the hymnal and find a favorite and hum it all the way through

10 Minute Stress Tamers: Take a walk Sit in the sun Rock on the porch
Pray or read a passage from scripture Journal: take the opportunity to “tell it like it is” Cuddle and stroke a pet. Have that cup of coffee or tea with a special friend who listens well. Pay attention to your personality: If you rejuvenate being alone, then seek solitude. If you rejuvenate by being with others, seek company.

Fifth Piece of the Puzzle:
Environment: Physical – Sensory – Social Four Fs: Friendly, Familiar, Functional, and Forgiving Four Ss: Space, Sensations, Surfaces, and Social Tab 3, Page 26

Looking At the Environment:
What Helps – What Hurts?

Supportive Environments:
Four F’s: Friendly: Are there people he or she knows? Familiar: Does he or she know the area? Functional: Is he or she able to do what is needed? Forgiving: Is he or she allowed to make mistakes? Tab 3, Page 26

Supportive Environments:
Four S’s: -Space: Intimate – Personal – Public -Sensations: See – Hear – Feel – Smell – Taste -Surfaces: Sit – Stand – Lie Down – Work Social: People – Activities – Role – Expectations Tab 3, Page 26

Supportive Environments The 3 Positive Ps:
Physical Environment People: the ways they act and respond Programming

Finding Balance: Support or impair Too much or too little

Environments Can Support Life!
Use Them Wisely!

Sixth Piece of the Puzzle:
Time: Daily Routines and Programming Filling the Day with Valued Engagement GEMS® Level Programming Tab 3, Page 27

Meaningful Activities:
Productive Activities: sense of value and purpose Leisure Activities: having fun and interacting with others Self-Care and Wellness: personal care of body and brain Restorative Activities: re-energize and restore spirit Tab 3, Page 27

Productive Activities:
Helping another person Helping staff Completing community tasks Making something Sorting things Fixing things Building things Organizing things Caring for things Counting things Folding things Marking things Cleaning things Taking things apart Moving things Cooking/baking Setting up/breaking down Other ideas Tab 3, Page 28

Leisure Activities: Passive:
Active: Passive: Socials Sports Games Dancing Singing Visiting Hobbies Doing, Talking, Looking Entertainers Sport Program/event Presenters Lobby sitting TV programs – watched Activity watchers Being done to Tab 3, Page 28

Self-Care and Wellness Activities:
Cognitive: Physical: Table top tasks: Matching, sorting, organizing, playing Table top games: Cards, board games, puzzles Group games: Categories, crosswords, word play, old memories Exercise Walking Strengthening tasks Coordination tasks Balance tasks Flexibility tasks Aerobic tasks Personal care tasks Tab 3, Page 28

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 Tab 3, Page 28

Teepa’s Rules: Music at least twice a day
Something productive for each Emerald resident Play with people, but keep it adult and watch for cues Smooth out transitions If they can do something, support their doing, don’t do to them or for them Encourage helping and always say thank you Respect space preferences: introverts/extroverts Match sensory experience to preferences: Sight, sound, smell, touch, taste Tab 3, Page 29

Each Day: Before Breakfast: Breakfast After Breakfast: Lunch
What do we want? How will we do it? Breakfast After Breakfast: Lunch After Lunch: Dinner After Dinner: What do we want? How will we do it? Bedtime: Tab 3, Page 29

What Can You Control? Or Not!
The environment: setting, sound, sights The whole day and how things fit together How the helper helps: Approach, behaviors, words, actions, and reactions Not Control: The person and who they have been: Personality, preferences, and history The type and level of impairment now Other medical conditions and sensory status: Meds, fuel, fluids Tab 3, Page 30

Part 4: Reframing Challenges into Puzzling Situations to be Resolved:
What makes challenging situations happen? We need to appreciate the Six Puzzle Pieces for all puzzles in care support and Recognize grief as an additional piece

For your persons in challenging situations, reframe: Get interested and excited, be challenged!

Describe the Situation:
Consider video to investigate Use objective language to describe the ‘situation’ Investigate non-challenging times and places: what is going on when the ‘situation’ is not happening Check it out from all perspectives: 360°

Investigate Carefully!!!
From Microscope to Telescope: Use a sensory approach: - Look, listen, feel, smell, taste, movement Check out the environment Look at public, personal, intimate space issues Get in their shoes and position Pay attention to cues and responses Look at timing, sequencing, and responses

Why Do You Need a Team? Life happens 24/7
These situations are complicated and multifaceted These situations affect everyone Each person will decide to participate or not To optimize positive outcomes, it works best if we: Have a common goal Start off in the same place Have a game plan Move in a planned, consistent direction Check in regularly Make adjustments as needed Celebrate the Ah-Ha moments and share the Uh-Ohs!

It’s Like Putting Together a Jigsaw Puzzle:
What is your life experience with dementia? Who are you personality-wise? How do you learn new information best? What is your relationship to the person and others? What is the environment of care? What type(s) and state of brain change is the person? What are the resources available? When are you putting time into this? Is it the right time and enough?

The Person Who they were Who they are becoming
Think of the person first and the brain change second. Consider: Who they were Personal history: joys/traumas Life Roles: professional/family Who they are becoming Preferences: likes/dislikes Personality traits Core values Fitness, Health, Wellness Remember other health challenges and previous lifestyle choices contribute to the situation. Consider: Ability to intake food/fluid Medication/supplement side effects Emotional/psychological stressors Sensory system function/sensitivity Personal healthy beliefs/choices Recent change: acute illnesses Brain Change Dementia is a syndrome, a collection of symptoms. Consider: Diagnosed type(s) of dementia Delirium might present as dementia Self-awareness of change Onset and duration of Symptoms Current GEMS® ability level Retained and changed abilities Stakeholders All individuals who interact with a person living with dementia (PLWD). Consider their: History with PLWD Awareness of the whole situation Knowledge of a changing brain Hands on dementia skill training Current relationship with PLWD Personal Agenda Environment Brain change impairs the nervous system and affects experience. Consider the four Fs and Ss of a setting: Does it feel Friendly and Familiar? Is it Functional and Forgiving? Sharing Space: Am I comfortable with public, personal, and intimate interaction? Response to Sensation: What happens when I see, feel, hear, smell, or taste something? Sensitivity to Surfaces: Notice responses to textures I touch, stand, or walk on. Social experiences: As my tolerance changes expectations of me will need modifying Time Are days structured and meaningful for a person? Notice if someone is experiencing time differently than you are. Consider these categories of time: Productive: offers value and purpose Leisure: preferred, fun and playful Wellness: gives self-care Restorative: calms and recharges Waiting: not natural or comfortable Where or What: becomes curious about a person’s experience of place and time of day

Top Ten Real Issues for the Person Living with Dementia!
Unmet Physical Needs: Hungry or Thirsty Tired or Over-energized Elimination: need to/did Discomfort: not right for me Temperature, texture, fit, senses Pain: Joints/skeleton Inside systems: head, chest, gut, output Creases or folds in skin Surfaces that contact other surfaces Emotional Reactions to Unmet Needs: Anger Sadness Loneliness Fear and Anxiety Boredom

Recognize: Grief is Real!
Grief is our response to loss. Not just when a person dies, but when they cease to be the person we remember You might be grieving The person you are trying to help may be grieving their own diminished abilities There are 5 stages of grief: Denial Anger Bargaining Sadness Acceptance

Why is This So Hard? Each of us will be going through these stages at our own rate and in our own time Because dementia keeps changing, we experience grief in moments as well as over time As the person loses more abilities, grief starts anew It continues to surprise us The person living with dementia is also grieving their losses

There a few new items to add on:
More on Grief and Loss: There a few new items to add on: Shock stage Testing stage Two other terms Getting Stuck Cycling

What Can We Do To Help? Recognize what is happening
Decide to try to something different Get support in place to do it Do it

Helping with Positive Change:
Your job: Figure out in what stage of grief the person is Go to where s/he is first Help the person move to the new state Their job: Express what they are feeling Figure out what is different and possible Go through the positive change process

Positive Change Process:
Uninformed optimism (honeymoon period): Excited and relieved about the new change Informed pessimism: Recognizing that it isn’t exactly what they had hoped for It is harder It isn’t fixed Informed optimism: Become more realistic and accepting Completion: Stable until…

Part 5: Practice Scenarios
Getting Curious, Not Judgmental: Exploring Consulting with an open mind Identifying the Six Pieces of the Puzzle Developing options to change the game

Putting It All Together:
Look at the Scenario Use the PAC tools to assess Personality Traits GEMS® Six Pieces of the Puzzle Multiple Intelligences AELC Investigate Decide who you will work with Role play through your investigation Gather your data Work out a plan with your partner/team Tab 4, Page 3

Scenario #1: Jim, an 89-year-old man with advanced dementia, is losing the ability to feed himself. He has lots of trouble using utensils and tends to ignore them once he starts picking things up with his hands. His daughter is very offended when he gets messy eating with his hands. Jim lives with his daughter in his home, and she is his primary caregiver. She is struggling with managing her father, her 4-year-old son, and all the home care tasks while her husband is away, working long hours at his job. Jim is friendly but has little language. He spends most of the day sitting in a recliner in the living room or in a chair in the kitchen, just wiping the table top and looking out the window at the bird feeder. He worked as a lawyer and had been very socially active. He was also an avid hiker and bird-watcher until he developed dementia at age 78, shortly after his wife died. Tab 4, Page 4

Scenario #2: Gerald, 87 years old, has broken his hip, gone through rehab, and returned to the facility. His wife states, “If he falls again, I’ll sue you.” He is getting up and walking around the community, asking where his wife is and when he needs to be ready to go to work. He used to be a businessman and made a lot of calls to others’ offices and buildings. He played bridge and golf previously. He is able to do some parts of his personal care and dressing, but has trouble getting all the way through it, makes lots of mistakes, and gets easily frustrated with staff and his family when they visit. He calls his wife “mom” sometimes and tries to kiss and hug his daughter while calling her by his wife’s name Tab 4, Page 5

Scenario #3: Carol is a 70-year-old woman who lives alone but spends much of her time with friends after her husband passed away three years ago. She is very fit and is part of many local groups and clubs. Last week, Carol showed up at a friend’s house unexpectedly, clearly having walked the 1.5 miles from her own home. It was very cold out and she was wearing only slippers and a housecoat. Carol does not currently carry a diagnosis of dementia, nor do friends report seeing major memory issues. Her friends are starting to become concerned, however, as she is starting to make people around her uncomfortable with her inappropriate comments, and they are worried that she may get kicked out of the clubs that she has been part of for so long. Carol does not appreciate when her friends point out the mistakes she has made and does not seem to understand that her actions and words are not appropriate. Tab 4, Page 6

Scenario #4: Beulah, a 92-year-old woman, keeps taking off her incontinence pad and urinating on the floor and in trash cans. She gets into trash cans and other people’s rooms and things if she can. She shreds tissues and hides cookies and candy in her clothing and drawers. She used to be a homemaker on a farm in the country. She is able to use only a few words at a time and spends most of her time walking around the facility, going into others’ rooms and spaces and getting into their things, moving them around, and taking some of them with her. Tab 4, Page 7

Scenario #5: Patrick, 76 years old, is living at home with his wife. He has been diagnosed with some sort of dementia by his family doctor. The doctor told him to stop driving, but Pat is still driving. He becomes very angry and confrontational when his wife, Ann, tells him he is not supposed to drive. He actually hit her one time when she tried to take the keys out of his hands. Now Ann usually rides with him while he drives and tries to get him to go “the back way” to places. She notices that he does well with the mechanics of driving, but relies more and more on her for directions on how to get places. Patrick is now retired, but used to work as a customer service representative, doing a lot of visiting of businesses. He has had no accidents so far, but did get lost two times and had to have someone call Ann to come get him. The couple lives in a suburban neighborhood with many close friends in the area. Tab 4, Page 8

Scenario #6: A family member comes in at 1:30pm every other day and complains that her father, 81-year-old Fred, has not been shaved and looks “horrible.” She threatens to take him somewhere else, but has been threatening this for two months and hasn’t yet done anything about it. He is operating in an Emerald state much of the time. He was a plumber for years and working alone most of the time. He also liked to go fishing alone or with one buddy. He has lost significant weight over the past three months and spends most of his time walking around the hallways and up and down the corridors. He tends to avoid noisy areas and leaves during singing activities. Tab 4, Page 9

Scenario #7: A resident’s son comes in every evening about 7:30pm and, after an argument and much physical handling, forces his 94-year-old mother, Elizabeth, to take a shower. He says she smells and needs to get cleaned up. She screams and argues throughout the event. He leaves, then she cries and is physically agitated until about 10:30pm. She is very frail and weighs about 95 pounds. She does much worse after the son visits. You recently found out that she is a Holocaust survivor. Tab 4, Page 10

Scenario #8: Marcia, aged 72, used to work as a nurse in a long-term care facility. She tries to make rounds and refuses to sleep at night. She is interested in having things to do to help out. Marcia tends to sleep for long periods during the morning and afternoon and often refuses meals and activities during those times. She becomes easily angered and loud if she is told she can’t come with along or help. She also responds in this manner when she is told she should get up and come to eat or to attend activities during those times. Her husband wants the facility to get her back on a ‘regular’ schedule. Tab 4, Page 11

Scenario #9: Sisters Edna, age 79, and Ellie, age 81, often squabble about the music on the dayroom CD player. One woman likes classical music and the other likes gospel or country. Typically, one keeps turning it off and the other keeps asking an aide to turn it back on. They both like to sit in the dayroom and tend to sit near one another. They often bicker, but lately it has started to become more violent if they are left alone. Tab 4, Page 12

Scenario #10: Tim is an 85-year-old retired preacher who lives with his Ellen, his wife of 55 years in a small house in a rural area. Tim was diagnosed with Lewy Body Dementia two years ago. Up until recently, the house seemed relatively well-kept, but recently their children have noticed that there is an odor of spoiled food in the kitchen and living room, and the bathroom smells of urine. When they have brought up the topic with Ellen, she reassures them that everything is under control and that there is no odor to be worried about. On a recent visit, the children heard both Tim and Ellen shouting obscenities at each other through the door. They tried to enter the house, but Tim would not let them stay, insisting that they were going to help Ellen poison him and that they were not his real children, they were “imposters.” Ellen was wearing multiple layers of clothing, though the house was very warm already, and she had a strong body odor. The children want to know whether or not their parents are safe to stay at home. Tab 4, Page 13

What Does It Mean? What Does It Take?

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