Transcript What is Dementia? - Chatham Council on Aging

Dementia
Understanding the Condition &
Improving Quality of Life
by Changing How We Do What We
Do!
Dementia is common
BUT
NOT NORMAL
Four Truths About Dementia
• At least 2 parts of the brain are dying
– One related to memory & the one other
• It is chronic – can’t be fixed
• It is progressive – it gets worse
• It is terminal – it will kill, eventually
Ten Early Warning Signs
• Memory loss for recent or
new information – repeats
self frequently
• Difficulty doing familiar, but
difficult tasks – managing
money, medications, driving
• Problems with word finding,
mis-naming, or misunderstanding
• Getting confused about time
or place - getting lost while
driving, missing several
appointments
• Worsening judgment – not
thinking thing through like
before
• Difficulty problem solving or
reasoning
• Misplacing things – putting
them in ‘odd places’
• Changes in mood or
behavior
• Changes in typical
personality
• Loss of initiation –
withdraws from normal
patterns of activities and
interests
Everyone deserves a Good
Work-up
Not everything that looks like
dementia is dementia
What Should the Doctor Do?
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A thorough physical and medical history
Blood work
A neurological exam
A good history from the person and the family
of the “problem”
A complete medication review
A CAT scan or MRI or PET scan
Neuropsychological testing – screening for
cognitive changes
Follow-up and counseling or at least a referral
Could It Just Be Getting Old?
Not Really
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There is a difference
At first it may be hard to tell
Then, you will start to notice patterns
One or more these things start to
show:
– Memory
– Word finding
– Thinking & Problem Solving
– Behaviors
What is Dementia?...
It is BOTH
• a chemical change in the brain
AND
• a structural change in the brain
So…
Sometimes they can and sometimes they
can’t
PET and Aging
PET Scan of 20-Year-Old Brain PET Scan of 80-Year-Old Brain
ADEAR, 2003
Cognitive Changes with
Aging
• Normal changes = more forgetful & slower to learn
• MCI – Mild Cognitive Impairment =
– Immediate recall, word finding, or complex problem
solving problems (½ of these folks will develop
dementia in 5 yrs)
• Dementia = Chronic thinking problems in > 2 areas
• Delirium =Rapid changes in thinking & alertness
(seek medical help immediately )
• Depression = chronic unless treated, poor quality , I
“don’t know”, “I just can’t” responses, no pleasure
can look like agitation & confusion
DEMENTIA
Alzheimer’s
Disease
•Young Onset
•Late Onset
Vascular
Dementias
(Multi-infarct)
Lewy Body
Dementia
FrontoTemporal
Lobe
Dementias
Other Dementias
•Genetic syndromes
•Metabolic pxs
•ETOH related
•Drugs/toxin exposure
•White matter diseases
•Mass effects
•Depression(?) or Other
Mental conditions
•Infections – BBB cross
•Parkinson’s
PET and Aging
PET Scan of 20-Year-Old Brain PET Scan of 80-Year-Old Brain
ADEAR, 2003
Positron Emission Tomography (PET)
Alzheimer’s Disease Progression vs. Normal Brains
Normal
G. Small, UCLA School of Medicine.
Early
Alzheimer’s
Late
Alzheimer’s
Child
Normal Brain
Alzheimers Brain
Learning &
Memory
Center
Hippocampus
BIG CHANGE
Understanding Language – BIG CHANGE
Hearing Sound – Not Changed
Sensory Strip
Motor Strip
White Matter
Connections
BIG CHANGES
Automatic Speech
Rhythm – Music
Expletives
PRESERVED
Formal Speech &
Language
Center
HUGE CHANGES
Executive
Control Center
Emotions
Behavior
Judgment
Reasoning
Vision Center – BIG CHANGES
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!
Brain atrophy
• the brain actually
shrinks
• cells wither then die
• abilities are lost
• with Alzheimer’s area of
loss are fairly
predictable
• … as is the progression
• BUT the experience is
individual…
Memory Loss
• Losses
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Immediate recall
Attention to selected info
Recent events
Relationships
• Preserved abilities
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Long ago memories
Confabulation!
Emotional memories
Motor memories
Understanding
• Losses
– Can’t interpret words
– Misses some words
– Gets off target
• Preserved abilities
– Can get facial
expression
– Hears tone of voice
– Can get some nonverbals
– Learns how to cover
Sensory Changes
• Losses
– Awareness of body and position
– Ability to locate and express pain
– Awareness of feeling in most of
body
• Preserved Abilities
– 4 areas can be sensitive
– Any of these areas can be
hypersensitive
– Need for sensation can become
extreme
Self-Care Changes
• Losses
– initiation &
termination
– tool manipulation
– sequencing
• Preserved Abilities
– motions and actions
– the doing part
– cued activity
Language
• Losses
– Can’t find the right words
– Word Salad
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Vague language
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Single phrases
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Sounds & vocalizing
– Can’t make needs known
• Preserved abilities
– singing
– automatic speech
– Swearing/sex
words/forbidden words
Impulse & Emotional Control
• Losses
– becomes labile &
extreme
– think it - say it
– want it - do it
– see it - use it
• Preserved
– desire to be
respected
– desire to be in control
– regret after action
How You Look At Dementia
MATTERS!
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It is NOT all about LOSS
It is NOT ‘untreatable’
It is NOT ‘unpredictable’
Behaviors DON’T come out of ‘nowhere’
Dementia DOESN”T just affect the
person with the disease – it impacts all
of us
Common Concerns
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Not wanting F PoA or HC PoA
Not willing to go to the doctor
Losing important things
Getting lost
Unsafe task performance
Repeated calls and contacts
Refusing help
Being rude
Bad mouthing you to others
Making up stories
Resisting/refusing care
Use of drugs or alcohol to cope
Making 911 calls
Mixing day and night
No solid sleep time
Not following care/rx plans
No initiation - apathy
Perseveration
Emotional meltdowns
Swearing, sex talk, racial slur, ugly
words
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Not doing personal care
Paranoid/delusional thinking
Threatening caregivers
Seeking people and places from the
past
Shadowing
Eloping or wandering
Seeing things and people
Getting “into” things
Undressing in public
Pxs w/intimacy and sexuality
Feeling sick c/o of pain
Striking out at others
Falls and injuries
Contractures and immobility
Infections and pneumonias
Pxs w/ eating or drinking
Why I Use What I Use…
3 systems – all use numbers
Each has value – together confusing
People are not numbers
Until we begin to the see the beauty
and value in what the person is at this
point in time – we will never care for
them as we should
• Gems are precious and unique –
common language and characteristics
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Gem Stones
• Based on Allen Cognitive Levels –
– Cognitive Disability Theory – OT based
• Creates a common language & approach
to providing –
– Environmental support
– Caregiver support & cueing strategies
– Setting expectations regarding retained
abilities and lost skills
– Promotes graded task modification for
success
How Do the Gems Help?
• Use familiar concepts to talk about a
difficult subject.
• Focus on what is valued.
• Allow to us to get beyond the words –
dementia and Alzheimer’s disease.
• Open the door to talking about
changes.
• Allow us to speak in a “code” to
protect dignity.
Now for the GEMS…
Sapphires
Diamonds
Emeralds
Ambers
Rubies
Pearls
Now for the GEMS…
Sapphires – True Blue – Slower BUT Fine
Diamonds – Repeats & Routines, Cutting
Emeralds – Going – Time Travel – Where?
Ambers – In the moment - Sensations
Rubies – Stop & Go – No Fine Control
Pearls – Hidden in a Shell - Immobile
Sapphires
Brains are Still True Blue!
You and Me on a GOOD Day
Normal Aging – No Dementia
Some are ‘Stars’ – Some are Not
Slower – but still shining
Sapphires
Clear & True – No dementia
May feel ‘blue’ over changes
Importance of ‘time’ true to lifetime
Will like to shine at times
Can make their own setting ‘right’
Will set their own pace
Will still need us in their lives
They can CHOOSE
Diamonds
Still Clear
Sharp - Can Cut
Hard - Rigid - Inflexible
Many Facets
Can Really Shine
Diamonds
• Know Who’s in Charge – Respect Authority
• Can do OLD habits & routines
• Become more territorial OR less aware of
boundaries
• Like the familiar – FIGHT CHANGE
• Can pull it together to make you look bad
• Know how to push your buttons
• Want to keep roles the same
• Tell the same stories ask the same ?s
Emeralds
Changing color
Not as Clear or Sharp - Vague
Good to Go – Need to ‘DO’
Flaws are Hidden
Time Traveling
Emeralds
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Think they are FINE
Get emotional quickly
Make mistakes – don’t realize it
Do over and over OR Skip completely
Ask – “What? Where? When?”
Like choices
Get lost in past life, past places, past roles
Need help, DON’T know it or like it!
Ambers
Amber Alert
Caution!
Caught in a moment
All about Sensation
Explorers
Ambers
• Get into stuff
• Fiddle, mess, touch, taste, dig, tear,
fold…..
• Move toward action and noise OR away
• Sensory tolerance
• Sensory need
• Mouth, fingers, feet, genitalia
• Can’t figure it out… react physically
Rubies
Hidden Depths
Red Light on Fine Motor
Comprehension & Speech Halt
Coordination Falters
Wake-Sleep Patterns are Gone
Rubies
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Fine motor stops
Hard to stop and hard to get going
Limited visual awareness
One direction – forward only
Can’t figure out details – but do copy us
SLOW to change
On the go or full stop
Use music and rhythm
Pearls
Hidden in a Shell
Still & Quiet
Easily Lost
Beautiful - Layered
Unable to Move – Hard to Connect
Primitive Reflexes on the Outside
Pearls
More Time WITHIN
Moments of awareness - LAYERS
Comfort – sights, sounds, touch,
smells, tastes, movements
GO SLOW – Be CALM – Stay in Touch
Pearls
• Can’t move
• Not aware of the world around – most
of the time
• Problems swallowing
• Hard to get connected
• How we touch and help matters
• SLOW!!!!
• Varies a LOT
Progression of the
Condition
To the TUNE of ‘This Old Man’
• SAPPHIRE true, you and me
• The choice is ours, and we are free
• To change our habits, to read, and think and
do
• We’re flexible, we think it through!
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!
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, once I copy you
What I see 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.
Early • Get good long term care insurance!
• Then - check out the possibility that
something IS WRONG
• See someone who is interested in
DEMENTIA and ALZHEIMER”S DISEASE
• Consider a specialist…
Mid-Way
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Use other forms of transportation – no driving
Manage $$$ safely
Manage Meds
Provide support DAILY
Monitor for task initiation & completion
Put things out that need to be done
Secure & put away things that should NOT be
used
• Secure exits & monitor for elopements
• Give lots of things to DO.. That have meaning
End of the Journey
• Nutrition & safe intake – when it stops?
• Hands on care – hand under hand, slow &
steady
• Meet needs & control pain
• Music and environments that are friendly
• Things to touch and handle
• Safe areas to move around in
• Places & times to rest
• Comfortable temperature & places
Intervention & Programming to:
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physical activity
mental activity
social activity
spiritual involvement
well-being and self-worth
minimize ‘risky’, challenging, or ‘dangerous
behaviors
• reduce anxiety or distress
Key Issues
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Early Diagnosis
Medications & Treatment
Legal Issues
Financial Issues
Care Options & Funding
Family Support & Education
Staff Support and Education
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!
Latest Thinking About Risk
Reduction…This Is For US!
• Help…
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Mental activity
Aerobic activity
Vitamin E & C in food
Heart Smart Diet
Omega 3 fatty acids (fish,
canola, flaxseed oils)
Lower weight
Not smoking
Enough sleep
De-stressing
• Help…
– Keeping iron in limits
– Keeping homocysteine ‘right’
– Vitamin B’s
– Staying socially active
– Getting depression treated
– Control diabetes better
– Control hypertension better
– Statins (if needed)
– NSAIDS (if needed)
– Prevent head injuries
So… What is Dementia?
• It changes everything over time
• It is NOT something the person can
control
• It is NOT always the same for every
person
• It is NOT a mental illness
• It is real
• It is hard at times
Dementia can be treated
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With knowledge
With skill building
With commitment
With flexibility
With practice
With support
With compassion
How to Get Started…
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Be Honest …
What is Going on NOW?
Get someone to help you look at it
Talk about ‘what is’ …
– The GOOD
– The BAD
– The UGLY!
Take Some Time To…
• Figure out WHO you are
And
• WHO your partner is…
• Similarities & Differences
And
• Respect Both Partners’ Needs
How can we help…
better?
It all starts with
your approach!
How you help…
• Sight or Visual cues
• Verbal or Auditory cues
• Touch or Tactile cues
What shouldn’t we do???
• Argue
• Tell ‘WHOPPERS’ – that relate to
emotions
• Ignore problem behaviors
• Try a possible solution only once
• Give up
• Let them do whatever they want to
• Force them to do it
So WHAT should we do???
Remember
who
has the healthy brain!
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 “Getting’ it Done”
I’m gonna DO with you
No more just “Getting’ it Done”
I’m gonna help you thru
No more just “Getting’ 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!
Your Guide to Support Family
Members with Dementia DVD
DVD
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