The Head, Hands, Heart Dementia Assessment System Presented by Sue M. Paul OTR/L Baker Rehab Group November 18, 2011 The Head, Hands, Heart Dementia Assessment System

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 * Does not pass through hippocampus* 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 Amnesia Aphasia Apraxia Agnosia

Cortical Atrophy

Activity #1 BREAK!

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 “Make yours look like mine” 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

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

Allen Level 4 GDS 4 MMSE <25 Developmental Age 4-12 *Goal Directed* Early Stage Allen Level 4 GDS 4 MMSE <25 Developmental 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: Well, maybe you say it’s wrong but that’s just the way I like it. My way is the best way. 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. Copyright © 2003

HEAD Precautions: Unable to understand precautions, complications, hazards. Written language is not reliable. Signs are not really effective. Copyright © 2003

HEAD Feeding: May eat too fast or too slow. 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. Feeding: 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. Copyright © 2003

HEAD Dressing/Bathing: I am really drawn to bold, striking visual input. Did you ever notice that I choose bright clothing and wear too much make-up? Dressing/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. Copyright © 2003

HEAD Toileting: May neglect parts of the task. This is a huge loss of dignity for me- and a very overwhelming task at times. Toileting: May neglect parts of the task. May require verbal reminders to initiate task. Completes the task although quality may not be good. Copyright © 2003

HEAD Functional 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

Activity #2 BREAK!

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.

Developmental Age 1.5-3 years old Middle Stage Allen Level 3.0- 3.8 GDS 5 Developmental Age 1.5-3 years old *Decreased sense of task completion*

Middle Stage

HANDS You may notice that I play with my food or grab other’s food from their plates. I’m easily distracted and overstimulated. 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 Copyright © 2002

HANDS Self-care skills: I am sometimes very resistant to care. Don’t you sneak up on me or just might get slugged! 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 Copyright © 2002

I hate confinement and may try to get out! I want to HANDS I hate confinement and may try to get out! I want to walk walk walk! Functional Mobility: Limited head/neck/trunk movement during walking Does not scan environment Has trouble stopping, may trip May be impulsive Frequent fallers Copyright © 2002

HANDS Cognitive skills/ communication: Able to name objects 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. 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 Copyright © 2002

HANDS Precautions: At risk for falls I love to use my hands...and touch everything! I tend to get into things I shouldn’t and carry them around with me. 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 Copyright © 2002

Have you seen my mother? Has anyone seen HANDS Behaviors: Pacing, repetitive actions Agitated, worried, trembling hands Unpredictable with social interactions Confused, acts randomly Have you seen my mother? Has anyone seen my mother? Copyright © 2002

HANDS Cognitive skills/ communication: Able to name objects 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. 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 Copyright © 2002

HANDS Self-care skills: I am sometimes very resistant to care. Don’t you sneak up on me or just might get slugged! 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 Copyright © 2002

I hate confinement and may try to get out! I want to HANDS I hate confinement and may try to get out! I want to walk walk walk! Functional Mobility: Limited head/neck/trunk movement during walking Does not scan environment Has trouble stopping, may trip May be impulsive Frequent fallers 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

Activity #3 BREAK!

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

Allen Cognitive Level < 2.8 GDS 6 and 7 Late to End Stage Allen Cognitive Level < 2.8 GDS 6 and 7 Developmental 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

HEART Precautions: 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! Precautions: Contractures Skin Breakdown Falls Aspiration Copyright © 2002

HEART Cognitive Skills/ Communication: 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. Cognitive Skills/ Communication: Speech mostly unintelligible, mumbles incoherently Unable to follow most verbal commands Poor attention span, distracted by moving objects Copyright © 2002

I can only see things less than 12 inches from my face. HEART I can only see things less than 12 inches from my face. Bring the world to me! Feeding: 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! Copyright © 2002

HEART Dressing/Bathing/ Grooming: Has no idea what to do with objects 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. Dressing/Bathing/ Grooming: Has no idea what to do with objects Assists caregivers by holding positions, moving limbs, and standing Copyright © 2002

HEART You may know me by my “death grip”. I have a hard time releasing things from my hands. Toileting: 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. Copyright © 2002

Give me moving stuff to look at! HEART 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! Functional 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. 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 Pull to stand 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

Activity #3 BREAK!

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

Who cares how you get there! 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

Chief Operating Officer The Dementia Queen http://thedementiaqueen.com/about/ Sue M. Paul OTR/L Chief Operating Officer Baker Rehab Group http://www.bakerrehabgroup.com

Posttest