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