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© Teepa Snow, Positive Approach, LLC – to be reused only with permission.
© Teepa Snow, Positive Approach, LLC – to be reused only with permission.
For the slides from this presentation, visit:
www.teepasnow.com/presentations
Slides will be available for 2 weeks
© Teepa Snow, Positive Approach, LLC – to be reused only with permission.
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
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Advanced Dementia
Care
© Teepa Snow, Positive Approach, LLC – to be reused only with permission.
Why is Dementia Different
as the End of the Journey
Approaches?
- It has taken a long time
- The person has changed, and changed, and
changed, and changed….
- The person has been lost, even as they remain
- How it was is not how it is
- What should happen/work, doesn’t always
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The GEMS® Progression of
Dementia:
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
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Rubies:-Hidden depths
-Major loss of fine motor finger and mouth skills, but can do gross motor skills like walking, rolling, rocking
-Comprehension and speech halted
-Wake-sleep patterns very disturbed
-Balance, coordination, and movement losses
-Eating and drinking patterns may change
-Tends toward movement unless asleep
-Follows gross demonstration and big gestures for actions
-Limited visual awareness
-Major sensory changes
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Common Ruby Issues:
- Safe mobility due to fatigue, wandering, and falls
- Intake and hydration: amount, safety
- Rest time and place: nighttime waking
- Shadowing others, invading places
- Not staying in one place, not settling for meals
- Reactions to hands on-care due to sensations
- Identifying and meeting needs
- Contractures and skin: bruises, tears, rashes,
pressure wounds
- Infections: UTI, yeast, URI, pneumonias
- Circulation
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Pearls:-Hidden in a shell: still, quiet, easily lost
-Beautiful and layered
-Spends much time asleep or unaware
-Unable to move, bed or chair bound, frequently fall
forward or to side
-May cry out or mumble often, increases
vocalizations with distress
-Can be difficult to calm, hard to connect
-Knows familiar from unfamiliar
-Primitive reflexes
-The end of the journey is near, multiple systems are
failing
-Connections between the physical and sensory
world are less strong but we may be the
bridge
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Common Pearl Issues:
- Not interacting much
- Crying out but can’t make needs known
- Skin and hygiene problems
- Weight loss
- Reflexes make care challenging
- Repeated infections
- Not eating or drinking
- Not able to sit up safely
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Typical Positioning – Why?
- Stronger muscles cause typical ‘fetal’
positioning
- Constant muscle activity causes
‘contractures’ (shortening) where
muscles can’t relax
- Pulling against contractures is painful
- Shortened muscles cause some areas to:
-Not get air – become ‘raw’ or ‘irritated’
-Rub or press against other body parts
-Get too much pressure – can’t move off
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Primitive Reflexes to
Consider: - Startle reflex: sudden movement causes total body motion
- Grasp reflex: when palm is touched, they grip hard and
can’t release
- Sucking reflex: sucks on anything near mouth
- Rooting reflex: turns toward any facial touch and tries to eat
- Bite reflex: any touch in mouth causes them to bite down
- Tongue thrust: anything in mouth causes tongue to push
forward and out
- Withdrawal/rebound: pull away from stretch
- Gag reflex: any touch to tongue causes gagging
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General Vision Field
Changes:
Ruby: monocular vision
Pearl: movement,
familiar/unfamiliar
Receptive Language
Changes:
Ruby: social chit-chat, music,
rhythm, tone of voice
Pearl: familiar and friendly,
calm or excited
Expressive Language
Changes:
Ruby: less articulated speech,
babble, hum or sing, rhythmic
vocalizations
Pearl: sounds to single words,
responsive
Dexterity – Hand Skills:
Ruby: whole hand with limited
finger use, can hold but
release difficult
Pearl: grasp strong, limited
opening
Body Skills:
Ruby: whole body, not
segmented, front ok but back
not
Pearl: reflexive, great trouble
with gravity or speed or
movement
People Awareness Skills:
Ruby: like or not like, familiar
versus not familiar
Pearl: voices, faces, touches,
smells, familiar or not
Place Awareness Skills:
Ruby: may or may not have a
destination, more of a
movement or stillness pattern
Pearl: can tell if what is
experienced is comforting
Time Awareness Skills:
Ruby: in the experience, not the
time
Pearl: time has much less
meaning
Situation Awareness Skills:
Ruby: only in moments, less
body awareness
Pearl: more inside than
externally aware
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Skills for Success in
Advanced Dementia Care:
- Meeting unmet needs with or without
words: using empathy and validation
and detective work
- Coping with and resolving distress one-
on-one
- Helping with challenging behaviors using
a problem-solving approach
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Positive Physical
Approach™:
-Pause at edge of public space (6 feet)
-Gesture and greet by name
-Offer your hand and make eye contact
-Approach slowly within visual range
-Shake hands and then maintain Hand-under-Hand®
-Move to the side
-Get to eye level and respect intimate space
-Wait for acknowledgement
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Hand-under-Hand®:Protects aging, thin, fragile, forearm skin
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Supportive Communication
• Repeat a few of their words with a question at
the end
• Avoid confrontational questions
• Use just a few words
• Go slow
• Use examples
• Fill in the blanks
• Listen, then offer empathy:
“Sounds like…” or “Seems like…” or “Looks
like…”
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To Connect:
- Use the Positive Physical Approach™ to
get started
- Make a Visual Connection:
-Look interested and friendly
- Make a Verbal Connection:
-Sound enthusiastic, keep responses short
- Make a Physical Connection:
-Hold Hand-under-Hand®, or use flat open
hand on forearm or knee
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Then, Connect Emotionally:
- Make a connection
-Offer your name: “I’m (name) and you are…?”
-Offer a shared background: “I’m from (place)
and you’re from…?”
-Offer a positive personal comment: “You look
great in that!” or “I love that color on you.”
-Make a positive observation: “What beautiful
flowers!” or “Great photo!”
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Finding Joy for Rubies:
- Walking a routine path
- Going forward
- Watching others
- Being close or having space
- Things to pick up, hold, carry, push, wipe,
rub, grip, squeeze, pinch, slap
- Things to chew on, suck on, grind
- Rhythmic movements and actions
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Finding Joy for Pearls:
- Pleasant and familiar sounds and voices
- Warmth and comfort
- Soft textures
- Pleasant smells
- ‘Good’ tastes
- Smooth and slow movement
- ‘Just right’ touch and feel
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Hospitalizations and
Advanced Dementia
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Essential Terms:
• Advanced Directives
• Living Will
• DNR Orders
• Durable HC-POA
• Palliative Care
• Hospice Care
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-Pneumonia
-Aspiration pneumonia
-Urinary Tract Infection
-Dehydration
-Fall related injury: fracture, head injury
Why Do People With Dementia
Typically Go to the Hospital?
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•Nearly 50% of people with moderate to severe
dementia go to the hospital each year
•If someone who has dementia is hospitalized,
they are 3X as likely to go to a nursing
home after discharge
•If dementia is a dx: 30-40% more likely to have
functional decline at discharge
Some Stats:
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-Treatment of 1o condition is impacted in over
75% of cases
-Stays are longer
-Functional losses are more common
-Costs of care are higher
-Outcomes are less positive
-Additional acute issues occur in 50-60% of
cases
When Dementia is a
Secondary Diagnosis:
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Comparing patients with dementia and
without dementia admitted for hip
fracture repair:
•Same number of procedures
•Same types of procedures
•¼ the pain medications
•3 times the antipsychotics
Pain Management:
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-Feeding tubes are still being placed
-Feeding tube placement did not affect
outcome
-Having an infection coming in did worsen risk
for death
-Average survival with or without a feeding
tube was 6 months
More Stats:
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•Falls and fall-related injuries
•Wandering or elopement attempts
•New onset incontinence
•Acute confusion: delirium
•Skin tears and skin breakdown
•Physical aggression toward care providers
•Pulling out tubes and monitoring equipment
•Inability to use call system
Acute Problems Connected to
Hospital Stays and Dementia:
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Possible Problem Areas:
-Quick start of behavioral control meds to ‘deal
with’ agitated/aggressive behaviors
-Not screening for dementia, depression, and
delirium at admission
-Inaccurate interpretation of verbal reports and
behavioral symptoms
-Inadequate pain assessment and management
-Inability to tolerate inactivity, isolation,
immobility, unfamiliar environment, etc.
-Inability to interpret and tolerate sensory
experiences
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So:
-Hospitalizations happen
-Hospital stays are risky for those with dementia
-Hospital stays are stressful to staff and family
members
-Standard communication and monitoring
systems are frequently ineffective
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When advanced planning takes place in
advance:
-There is greater satisfaction on the part of
family and care providers
-Quality of care is described as better
When decisions are ‘forced’ by immediate
circumstances:
-More dissatisfaction with decisions
-Longer hospital stays, more procedures
-Survival outcomes at 3 months unchanged
Advanced Planning Helps:
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The Care Triad for Someone
Living with Dementia:
PLwD - Patient
Care Partner Doctor
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-Ask family to create a Personal Information Sheet
-Recommend that the family bring in ‘comfort
items’ for the individual (favorite
pictures, lotions, blankets, food, etc.) and
use them!
-Modify the room for best performance
When the Time Comes for a
Hospitalization:
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Preferred name and key life history
Family information
Illnesses or other medical conditions
Medications (drugs, OTC, vitamins, herbs)
•Allergies or histories of bad reactions
•Discourage stopping ACIs if possible (Aricept, Exelon, Reminyl)
Need for glasses, dentures, hearing aid
Amount of help needed for activities
Personal Information Sheet:
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Degree of impairment:
•Memory
•Language
•Understanding
•Hand skills
•Movement
•Judgment
•Impulse control
‘Hot buttons’: things that upset them such as words, actions, responses, etc.
Favorite foods or items that comfort
How do they pain or other unmet needs?
Personal Information Sheet:
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Consider using a
‘Respond’ Bracelet:
This may alert others to this person’s condition
and make them more sensitive and aware.
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-There are other options
-Let people know the options
-Talk through what that means
-Feel okay about it
Should This Person Really Be
Hospitalized?
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The Three D’s:
Delirium,
Depression/Anxiety,
and
Dementia
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Determine First:
Is This Delirium?
- Delirium can be dangerous and deadly
- Get a good behavior history, look for change
- Assess for possible pain or discomfort
-Assess for infections
-Assess for med changes or side effects
-Assess for physiological issues:dehydration,
blood chemistry, O2 sat
-Assess for emotional or spiritual pain
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Delirium:
- Onset: sudden, hours to days
- Duration: short, can be either cured or leads to
death
- Alertness and Arousal: fluctuates, hyper or hypo
- Orientation responses: highly variable
- Mood and Affect: highly variable
- Causes: physiological, psychological
- Tx Condition: identify and treat what is wrong
- Tx Behavior: manage for safety only, it is
short term so don’t mask symptoms
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Likely Causes of Delirium in
Elders:
- Infection: UTI, URI, sepsis
- Dehydration
- Drug: effect, side effect , interactions,
sudden stop, mis-taking
- Sleep deprivation: poor sleep
- Oxygen deprivation or imbalance
- Pain or discomfort: including impaction
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More Causes of Delirium:
- Sensory deprivation: vision, hearing, balance
- TIAs or little strokes in brain
- Alcohol use
- New Onset Illness: diabetes, hypothyroidism
- Nutritional Issues: intake or processing
problems
- Anesthesia: post-surgical
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Second, Is it Dementia or
Depression/Anxiety?
- Often impossible to distinguish/separate
depression and anxiety
- Depression/anxiety 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, ‘can’t take
this’ comments, residence or schedule
changes
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Depression/Anxiety:
- Onset: recent, weeks to months
- Duration: until treated or death
- Alertness and Arousal: not typically changed
- Orientation responses: “I don’t know,” “I can’t
say,” “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 changes and
environmental support, combined with meds
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Likely Profiles of
Depression/Anxiety in Elderly:
- Combination causes
- First episode in late life not uncommon
- Re-emergence of previous undiagnosed
depression
- Resistance to seeking help
- If situational depression not addressed, it
often escalates
- Depression = somatic pain complaints
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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 is being
provided
- Seek consult and further assessment, if
documentation does not match what you
find out
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Palliative:
- Comfort Care
- Top Priorities:
-Honor personal preferences and choices
-Manage Pain, Distress, Anxiety, Fear,
Discomfort
-Identify and seek to meet social, physical,
psychological, and spiritual needs
- Let go of fixing and move on to comforting
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So When Should You Say
‘When’?
- Cost versus benefit to the person
- What is possible versus what is probable
- Best case outcome: is it worth it?
- See the ‘big picture’ for the person
- What did they tell you before?
- Who are they and are they still able to be
that person?
- Is this about them or about you or about
someone else?
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Signs that the end of the end of
the journey:Repeated infections
Antibiotics seem ineffective
Refusals to eat, even favorite items
Holding food in mouth or spitting it out
Soft coughs, wet voice
Stops moving, curling up
Sleeping a lot
Lots of low grade fevers
Primitive reflexes show up
Withdrawal from those around, closing eyes
Drifting in and out
Says ‘good-bye’
Talks about ‘going home’
Asks permission to go
Albumin drops very low
Wounds won’t heal
Can’t keep weight on
Skin and bones
Moaning but not actively communicating
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Changes Near the End:
- Primitive reflexes become strong
- Flexor tone dominates
- Temperature control is broken
- ‘Skin and bones’ appearance, not hungry or thirsty
- Spends more time drowsy or ‘inside’ themselves
- Infections are common
- Startles easily, harder to calm
- Pain from stiffness, immobility, dry mouth/skin, etc.
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Comfort Care: What Does
This Look Like?
- Using comfort measures that help
- Providing a supportive sensory and
physical environment
- Meeting the needs of the body through
temperature, positioning, touch,
smells, taste, sight, sound, movement
- Celebrating and connecting to the spirit
within through your presence and
involvement
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What Does This Mean?
- Reduce or stop monitoring if there is not
a ‘treatment’ that will be pursued
- Provide what the person wants or needs,
not what is ‘best’ for them
- Provide comfort
-Assess for and manage pain, discomfort,
or distress
- Give them permission to ‘go’
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What Does This Mean?
-Don’t treat infections, but treat the discomfort
of infections
-Don’t force intake, but offer tastes and
textures
-Don’t push fluids or put in IVs, but offer fluids
(possibly thickened)
-Don’t force movement, but use touch,
massage, and controlled repositioning
-Don’t just ‘do the care’ then leave alone, but be
present
-Don’t force interaction but balance offerings of
silence with communication/contact
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The content contained in this presentation is strictly for informational purposes. Therefore, if you wish to apply concepts o r 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,
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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
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