Post on 23-Feb-2016
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Dementia Care for America’s Heroes
Part 3: Recognizing changes & progression of the disease Presented by Heather McKay, MS, OT/L, Dementia Care Specialist
NASVH 2013 Summer Conference September 3, 2013
Brain atrophy Brain actually shrinks Cells wither then die
(darker color) Sick cells are unreliable Fluctuation happens at
all levels Some types of dementia
are predictable while others are “patchy”
Each person’s experience is individual
Memory Loss Losses
Situational memoriesImmediate recallRelationshipsMotor memories
Preserved abilities Long ago memoriesConfabulation (re-writing
history)Emotional memories
Understanding Losses
Information words Explanation of the facts
Preserved abilities Understands facial
expression Understands tone of voice Understands gestures May act like she understands
when she doesn’t
Language Losses
Can’t find the right words Can’t explain the situation Vague language Single phrases Sounds & vocalizing Can’t make needs known
Preserved abilities Singing Automatic, social speech Swearing/sex
words/forbidden words
Impulse & Emotional Control Losses
Social graces aren’t what they used to be
Think it - say itLike it - do itSee it - take it
PreservedDesire to be respectedDesire to be in controlHolding on to feelings
Measuring with different tools 3-level: Early, Middle, Late 7-level: Global Deterioration Scale 5-level: Cognitive Disabilities Scale
(Allen Cognitive Levels)
Progression of Cognitive Loss
Many assessment tools What is lost & retained What is typical behavior What helps & works Levels 5-1
Progression of the disease 6 is normal-that’s you! 5 is earliest stage and 1 is the lowest at
the end of the disease We’ve all been a 5 Stress UP>brain function DOWN
Level 5 - Routines & Repeats Earliest signs of
change Repeats stories Logic problems “My way” Very ‘independent’
or seeking constant reassurance
Resents take-over
Confused about the schedule Can follow prompts and
reminders Has trouble with new
routines and locations Becomes anxious and
frustrated easily Tries to maintain control &
social behavior Routine, routine, routine Caregivers learn to say, “I’m
sorry, you’re right”
Level 4 - Task Oriented Wants to “just get it done” Has trouble sequencing the
steps Skips steps Believes they can do it ‘Don’t need your help’ Information language is poor Has a mission in mind Can’t find the bathroom, so
he urinates in the floor Can follow simple gestures
and demonstration
Uses visual information to figure out what to do
Asks the same question again and again
High risk for elopement Needs a good caddy 3 C’s of level 4:
Coverage Communication Car
Level 3 - Exploring Needs step-by-step guidance for
personal care Needs hands-on help to get started
or go from place to place. Follows demonstration and hand-
under-hand guidance After a few steps, the person may
be able to continue on their own-for a few minutes
Hands are busy touching, handling everything
Will not recognize others’ space or belongings
Will strip clothes when it’s hot!
Imitates actions, repeats actions over and over
Follows others & caregiver Does activities that look or
sound or taste good Leaves places or activities that
are TOO busy or crowded May taste or eat what they see Has trouble transitioning
between activities Sleep cycle changes Hand-under-hand position
Level 2 - Stuck on GO or STOP Automatic actions
only May carry items,
rub/ pat/clap with hands
Limited visual processing
Very limited communication skills
Can’t get started, then can’t stop
Imitates your general movements
Can’t grade strength Better with rhythm and
repetitive movements Needs hand-under-hand
for self care and walking Poor appetite, eats and
drinks less Sleep cycle changes
Level 1 – Reflexes Rule Bed bound or chair bound Sleeping more Looks or listens at times, when awake Holds objects or rubs/claps/pats with assistance Responds to massage, stroking, smells, colors, lights-
inconsistently Lots of reflexes Grabs/grasp but can’t let go Needs maximum help to do all self care and transfers
May vocalize sounds for pleasure or stress May make facial grimaces Muscles shorten May feel stiff and sore Difficulty swallowing Difficulty fighting infections High fall risk when out of bed Sensitive to familiar, calm voice Breathing changes Moments of being present “We are following his lead”
Detective work at every level Supporting people as they change Mobility problems? Pain? Sensory problems? Mental health issues? Other diagnoses of importance?
Believe People with dementia are doing the BEST they can!
Contact InformationHeather McKay
Partnerships for Healthwww.pfhnc.com
Click “contact us”
(919) 260-5986heather@hospiceac.org
Video Training Tools: Dementia Care for America’s HeroesOrder online at www.pfhnc.com