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

LossesSocial graces aren’t what

they used to beThink 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 Health

www.pfhnc.com

Click “contact us”

(919) 260-5986

heather@hospiceac.org

Video Training Tools: Dementia Care for America’s Heroes

Order online at www.pfhnc.com