The Head, Hands, Heart Dementia Assessment System

Presented by Sue M. Paul OTR/LBaker Rehab GroupNovember 18, 2011

Objectives

Understand memory and sensory processing in the demented brain.

Identify the hallmark characteristics of each stage of dementia.

Identify skills and deficits that could benefit from therapy services.

Understand the assessments available to determine a level of dementia.

Identify best practices and interventions for developing treatment plans and goals.

Pretest

Common Types of Dementia

Alzheimer’s disease Parkinson’s disease (20%) Vascular (Multi-infarct) Lewy Body (fluctuations and

hallucinations) Creutzfeld-Jakob (Mad Cow) Pick’s disease (Frontotemporal) Korsakoff’s Syndrome (ETOH)

Dementia Statistics

http://www.alz.org/documents_custom/2011_Facts_Figures_Fact_Sheet.pdf

Therapy Training

Only taught “traditional learning” in school

Old days, insurance wouldn’t pay if dementia was a diagnosis

Compensation not viewed as rehabilitation

Learn neuromuscular strategies for brain injury, CVA, and pediatrics, but not specific to Alzheimer’s brain.

Paradigm Shift

Access the Alzheimer’s brain through non-traditional approaches

Pull from neuro and pediatric techniques used in other settings

Rehabilitate, then compensate (yes you can do both)

Focus on someone with a non-Alzheimer’s brain to carry out interventions

Inside the Brain

Temporal Lobe

Language comprehension

Short term memory

Long term memory Explicit memory-

new learning

Frontal Lobe

Executive function Multitasking Judgment Abstract thinking Mental flexibility Problem solving Attention Initiation Inhibition Language production Persistence Volition

Occipital Lobe

Visual recognition People Things

Parietal Lobe

Sensory Cortex Motor Cortex Some attention

and language

Cerebellum

Automatic motor tasks (ADLs)

Motor control/smooth movements

Balance/gait Sustained

attention/effort (brainstem)

Mental speed Posture

Hippocampus

Critical for laying down declarative memory

Must have bilateral damage to hippocampi to affect memory (not usually memory loss from cva)

Very susceptible to Alzheimer’s disease and epilepsy

Caudate Loop where memories are born

Amygdala

Just in front of the hippocampus Perceives fear, and initiates fight or

flight “Un-erasable” memory (PTSD) Some people are genetically wired for

higher level of fear (panic disorder) Amygdala is bigger in people with

bipolar disorder “Conditioned” fear response- stuck in a

fear circuit

Sue’s Amygdala

Types of Memory

Working memory- most short term, repeats directions or adding numbers in head, forgotten as soon as attention stops

Declarative memory- long term memory, laying down new memory, hippocampus dependent

Procedural memory- most durable, actions, habits, and skills that are learned by repetition, cerebellum involved

Procedural Memory

Also known as Implicit Memory Learning without awareness Motor Memory

* Does not pass through hippocampus*

Motor Learning

Task specific Use automatic patterns (feeding,

translation) Repetition breeds performance No generalizing

4 A’s of Alzheimer’s

AmnesiaAphasiaApraxiaAgnosia

Cortical Atrophy

BREAK!

Activity #1

Assessments

Routine Task Inventory Global Deterioration Scale/ FAST MMSE Clock Test Placemat

*Flip Book*

The Theory of Retrogenesis

The Theory of Retrogenesis

“ Retrogenesis is the process by which degenerative mechanisms reverse the order of acquisition in normal

development.”

BACK TO BIRTH

The Theory of Retrogenesis

Developed by Dr. Barry Reisberg Basis of Functional Assessment

Staging Test (FAST) Basis of Global Deterioration Scale

(GDS)

The Allen Cognitive Theory

“Functional cognition encompasses the complex and dynamic

interactions between an individual’s cognitive abilities and the activity context that produces observable

performance.”

The Allen Cognitive Theory

Developed by Claudia Allen, OTR/L Originally called the Cognitive

Disabilities Theory, Allen described observations categorized by the functioning of psychiatric patients.

Basis of Routine Task Inventory, Allen Cognitive Level Screen, and the placemat activity

Allen Cognitive Levels

See handout

Placemat Activity

Administered as supportive assessment of suspected dementia level.

Not a standardized test

Good, subjective tool for sizing up organizational skills, visual processing, and personality changes

“Make yours look like mine”

Mini Mental State Exam

MMSE Developed by Marshall Folstein in

1975 Score 25/30 considered normal Early stage Alzheimer’s usually falls

between 19 and 24. Disadvantages- need to account for

age, education, and ethnicity Physicians love it

Digit Repetition Test

Clock Drawing Test

Trail Making Test

Introduce HHH

Flip book Data collection Website Procedure for printing

HeadHandsHeart.com

http://headhandsheart.com/login.asp

Early Stage

Early Stage

Allen Level 4GDS 4MMSE <25Developmental Age 4-12

*Goal Directed*

Early Stage

Rigid, inflexible thinking Egocentric Independent familiar ADLs Denies impairment, defensive Depression, anxiety, fear, anger Needs assistance with finances,

appointments, medications, home management

HEAD Cognitive

skills/Communication: Understands beginning,

middle, and end of an activity.

Can seek help but may not remember emergency procedures.

Rigid, likes routine. Self-centered communication,

confabulates, high verbal output.

Recognizes highly visible striking cues in the environment.

Limited reading comprehension.

New learning possible with maximum repetition if highly valued.

Believe that nothing is wrong with them.

Well, maybe you say it’s wrong but that’s just the way I like it.

My way is the best way.

Copyright © 2003

HEADPrecautions: Unable to

understand precautions, complications, hazards.

Written language is not reliable.

Signs are not really effective.

Copyright © 2003

HEADFeeding: May eat too fast or

too slow. Annoyed with others

eating near them. Complains about food.

Grooming: May neglect unseen

surfaces (back of head).

Sequencing errors.

If you tell me to go brush my teeth I will stay on task.

I just may forget to use toothpaste or rinse out my mouth.

Copyright © 2003

HEADDressing/Bathing: Performs familiar self

care with decreased attention to unseen surfaces.

Follows routine. Remembers what they

are doing throughout task.

Clothing selection may be based on striking features (brightest shirt in the closet).

Quality may not be good.

I am really drawn to bold, striking visual input.Did you ever notice that I choose bright clothing and wear too much make-up?

Copyright © 2003

HEADToileting: May neglect parts

of the task. May require verbal

reminders to initiate task.

Completes the task although quality may not be good.

This is a huge loss of dignity for me- and a very overwhelming

task at times.

Copyright © 2003

HEADFunctional Mobility: Able to navigate using

familiar landmarks. Transfer skills depend

on familiarity of environment.

Carries walker if distracted, but will correct with cues.

Notices barriers above and below knee.

Trunk becoming more rigid.

I can remember new things with tons of patience and practice!

Early Stage Treatment

Early Stage Observations

Decreased trunk rotation Weak core Stooped posture- looking to floor for

stability Shoulder internal rotation and

adduction Cannot sustain verbal commands

Early Stage Interventions Cognitive remediation Compensation Adaptation and Modification Balance Body awareness Core strengthening Facilitate the tough conversations

Driving Additional care Living arrangements

Early Stage Treatment

Organize environment Put strategies in place Use motor learning/repetition to

bypass hippocampus Introduce adaptive equipment now Cognitive remediation to the fullest

extent possible- evaluate reading and memory.

If they do it, they will remember it (marking calendar, schedule...)

Early Stage Treatment

Don’t ask for permission or approval. Use positive, affirming conversation- use “we” not “you”.

Use activities with hidden agenda Constantly evaluate motor skills and

weaknesses Practice concepts like in/out, sorting,

categorizing- and generalizing skills to other tasks

Early Stage Treatment

Stop talking! Allow extra time to process verbal

commands Use gestures/demonstration

frequently Always sequence left to right Scavenger hunts:

Above/below knee level Above/below eye level

BREAK!

Activity #2

Figure It Out!

Dementia Level Goals Treatment Plan Caregiver Instruction

What skills do you want to maintain? What information is most useful to

caregivers? What are your recommendations for

functional maintenance program (ISP?) How much assistance/supervision is

necessary?

Doris

Repeats herself Denies deficits Walks with a cane, looks at floor Can put on clothes, but doesn’t take

season or occasion into account Can print name but not write

signature Husband talks her through ADLs,

complains that she is distracted and it takes a long time

Doris

Anxious about showering, trembles. Exiting stall shower is very unsafe and upsetting

Toilets herself but uses too much toilet paper

Sundowns- wants to go home to mama and daddy

Doris

• Repeats self throughout activity• Needs encouragement to continue• “This is dumb.”• “I’ve done this before.”• “I’m no good at handiwork.”• I need my glasses.

Middle Stage

Allen Level 3.0- 3.8GDS 5Developmental Age 1.5-3 years old

*Decreased sense of task completion*

Middle Stage

HANDS Feeding: May reach for food

from other place settings or centerpiece

Unable to complete meal without redirection and set-up

Plays with food and utensils

You may notice that I play with my food or grab

other’s food from their plates. I’m

easily distracted and

overstimulated.

Copyright © 2002

HANDS Self-care skills: May initiate action with

familiar object- but not sustain to completion

Resistant to care Layers clothes until all

items used up, unable to orient clothing or sequence task

Needs supervision or assistance with toileting

I am sometimes very resistant to care.

Don’t you sneak up on me or just might

get slugged!

Copyright © 2002

HANDS Functional Mobility: Limited

head/neck/trunk movement during walking

Does not scan environment

Has trouble stopping, may trip

May be impulsive Frequent fallers

I hate confinement and may try to get

out! I want to

walk walk walk!

Copyright © 2002

HANDS Cognitive skills/

communication: Able to name objects Decreased sense of task

completion Needs verbal cues to

sequence steps of an activity

Responds best to demonstrated instructions

Word finding problems Loses the thread of a

story Jargons, incoherent

sentences

I have to get out of here. I’m late for work and the train is on that

other thing over the @#%*! out

that window day @#%*! right here

in Chantilly.

Copyright © 2002

HANDS Precautions: At risk for falls Unable to understand

precautions, complications, or hazards

Does not recognize need for help

At risk for accidents- poison, sharp objects, elopement

I love to use my

hands...and touch

everything! I tend to get into things I

shouldn’t and carry them around with

me.

Copyright © 2002

HANDS Behaviors: Pacing, repetitive

actions Agitated, worried,

trembling hands Unpredictable with

social interactions Confused, acts

randomly

Have you seen my mother?

Has anyone

seenmy

mother?

Copyright © 2002

HANDS Cognitive skills/

communication: Able to name objects Decreased sense of

task completion Needs verbal cues to

sequence steps of an activity

Responds best to demonstrated instructions

Word finding problems Loses the thread of a

story Jargons, incoherent

sentences

I have to get out of here. I’m late for work and the train is on that

other thing over the @#%*! out

that window day @#%*! right here

in Chantilly.

Copyright © 2002

HANDS Self-care skills: May initiate action

with familiar object- but not sustain to completion

Resistant to care Layers clothes until all

items used up, unable to orient clothing or sequence task

Needs supervision or assistance with toileting

I am sometimes very resistant to care.

Don’t you sneak up on me or just might

get slugged!

Copyright © 2002

HANDS Functional Mobility: Limited

head/neck/trunk movement during walking

Does not scan environment

Has trouble stopping, may trip

May be impulsive Frequent fallers

I hate confinement and may try to get

out! I want to

walk walk walk!

Copyright © 2002

Middle Stage Treatment

Implicit/Procedural Motor Learning!

Specific transfers Gait training with

demonstration Post-It Notes Count the pictures Reciprocal, gross

motor movements

Middle Stage Interventions Neuromuscular Re-education AROM Core strengthening Cognitive compensation ADL focus on highly familiar tasks Balance training/fall prevention Enabling devices

Bed handles Grab bars Rollator if familiar

Middle Stage Treatment

Balloon batting Ue rom Open hand Automatic response Sitting or standing Balance training Alternate/reciprocal Postural

adjustments

Middle Stage Treatment

Post-It Notes Place at different heights around room PNF patterns/ rotation Above/below knee level and eye level Search inside cabinets and drawers

BREAK!

Activity #3

Ed

• Pretty steady attention span• Breezes through it• Cannot follow pattern or remember to refer to it.

Ed

Moved into ALF 3 years ago with wife. She died shortly after. Retired optometrist.

Was very high functioning but depressed for several months. Quick decline in mental status after suffering a fall and hip fracture.

Moved to memory care unit six months ago.

Will not participate in activities. Will not sit through entire meal. Very sweet and pleasant.

Ed

Staff has him labeled as sexually inappropriate because he tries to touch them all the time.

Loses the thread of a story, poor word finding

Anxious and wandering at times, socially withdrawn other times.

Helps with putting shirt on but is easily distracted and stops what he’s doing.

Walks down hall holding onto railing and furniture. Multiple falls.

Figure It Out!

Dementia Level Goals Treatment Plan Caregiver Instruction

What skills do you want to maintain? What information is most useful to

caregivers? What are your recommendations for

functional maintenance program (ISP?) How much assistance/supervision is

necessary?

Middle Stage Treatment

Tap into long term memory for functional use of hands

Haptics It’s all about the

hands! RELEASE!

Instinctual play Doll Dog

Late to End Stage

Allen Cognitive Level < 2.8GDS 6 and 7Developmental age infant to 1.5 years

* Unable to Release*

Late Stage

HEART

Allen Level 1: Mostly bedbound Can move limbs

and head Total assistance

for self care and mobility.

Developmental age infant

Allen Level 2: Can overcome

gravity Can sit, stand

and/or walk (mobility)

Have a sense of balance, although not good

Developmental age 1-2 Copyright © 2002

HEARTPrecautions: Contractures Skin

Breakdown Falls Aspiration

Because I can’t move or communicate well, I’m really at risk for contractures, falls,

and skin breakdown. YOU can prevent this from happening to

me!

Copyright © 2002

HEARTCognitive Skills/

Communication: Speech mostly

unintelligible, mumbles incoherently

Unable to follow most verbal commands

Poor attention span, distracted by moving objects

A funny trick I know:I may only be able to say

one or two words, but I can sing a whole song without

any errors.

Copyright © 2002

HEARTFeeding: May be able to

feed self with limited or extensive assistance

More successful with finger foods

Can sip from a cup held to lips until very end stages- don’t introduce a straw too early!

I can only see things less than 12 inches from

my face. Bring the world to

me!

Copyright © 2002

HEARTDressing/Bathing/Grooming: Has no idea what

to do with objects Assists caregivers

by holding positions, moving limbs, and standing

I have a major fear of falling. I may resist, hit, or kick but it’s

only to protect myself from injury. I’m not just being

difficult.

Copyright © 2002

HEARTToileting: Needs assistance

with managing clothing, perineal hygiene, and positioning on toilet

Frequently incontinent

Inappropriate toileting locations- sometimes the same place over and over.

Can assist caregiver by holding onto grab bar.

You may know me by my

“death grip”. I have a hard time releasing things from my hands.

Copyright © 2002

HEARTFunctional

Mobility: Higher level

“hearts” walk aimlessly, pace, rock, and march.

Lower level “hearts” can only respond with a grimace or glance.

Seek stability and comfort

Enjoy gross motor activities- without a sense of purpose.

I can turn my head to track a moving object even at the last stages

of my disease.

Give me moving stuff to look at!

Copyright © 2002

Fetal Tuck vs. Pull to Stand

Lift someone under the arms, legs will flex

Have person pull up at bar, legs will extend to bear weight.

Primitive Reflexes Reappear Sucking reflex Rooting reflex Palmar grasp reflex Babinski reflex

*The areas of the brain that are last to be myelinated during

development are the most vulnerable to death*

Late Stage Interventions

Seating and Positioning Functional use of hands Interaction with environment Caregiver training for quality of life

issues Aspiration Skin breakdown Comfort/pain Contractures Touching

Late Stage Treatment

ADLs for object recognition How do they hold it in their hand?

Pull to stand Self feeding Visual tracking, turning head,

reaching for items Use reflexes to elicit movement-

rooting, protective extension, hand-to-mouth movement patterns.

Use Backdoor Access

BREAK!

Activity #3

Alice

Nonverbal Bilateral UE/LE

contractures Rigidity Death grip Falls forward out of

chair Inconsistently uses fork

appropriately, puts everything in mouth

Does not consistently bear weight for transfers

What’s the best way to do this?

Visual Attention/Body Awareness

Find the exit signs Count the pictures on the wall Pull off the post its Balloon batting

The Head, Hands, Heart Program

Completed by OT online near end of episode

Copy is sent to physician and family Copy placed in ALF chart if

applicable Used as a tool to educate caregivers

and give objective recommendations based on dementia findings

Documentation Tips

Make it smart! What is the purpose of your intervention?▪ To improve..▪ Trunk and pelvic stability?▪ Functional reach on a stable base?▪ Sequencing and task organization?▪ Postural deformities?▪ Risk of falls?▪ Risk of contractures?▪ Risk of skin breakdown?▪ Socialization and interaction with environment?

Who cares how you get there!

Seating and Positioning

“Upright and midline posture necessary for:” Improved air exchange Improved socialization Preventing abnormal postures Promoting functional use of upper

extremities Improved communication Decreased caregiver burden Preventing falls and decreased skin

integrity

Toolkit on a Budget

Balloon Pen, screwdriver, paintbrush,

toothbrush, flashlight Lipstick, mascara, nail file, nail

polish, brush Post-it Notes Painter’s tape

Equipment

Equipment

The Secret Sauce

Start with what you know Don’t listen, watch. What does this disease looks like at the

end? What are the associated complications

of Alzheimer’s? What can you do to put off the

inevitable? What works? What doesn’t work?

The Secret Sauce

Determine the level of dementia Visualize one level down the road

Use the backdoor to the brain Implicit/motor memory Demonstration Repetition and consistency

Research and Evidence

Research and Evidence

Alzheimer’s research- prevention Estrogen Insulin Antioxidants Anti-inflammatory Genetics

Alzheimer’s research- therapies Aricept stops breakdown of acetylcholine Namenda works by binding to the NMDA

receptor and preventing excessive excitation by glutamate.

References

http://www.wiredtowinthemovie.com/mindtrip_xml.html

http://www.bakerrehabgroup.com/assets/cms/files/Articles/Retrogenisis%20Theory.PDF

http://www.bakerrehabgroup.com/assets/cms/files/Articles/Alz%20Disease%20and%20Implicit%20Memory.PDF

http://www.bakerrehabgroup.com/assets/cms/files/Articles/Routine%20Task%20Inventory%20Expanded0023.PDF

References

http://www.bakerrehabgroup.com/assets/cms/files/Articles/Assess%20Approach%20of%20Pt%20w%20dementia.PDF

http://www.bakerrehabgroup.com/assets/cms/files/Articles/Primitive%20Reflexes%20in%20AD%20.PDF

The Dementia Queen

http://thedementiaqueen.com/about/

Sue M. Paul OTR/LChief Operating Officer

Baker Rehab Grouphttp://www.bakerrehabgroup.com

Posttest