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Stage-Specific Assessment and Intervention Strategies for Individuals With Progressive Dementia and Their Caregivers William Dieter, PT, DPT, GCS James Eng, PT, DPT, MS, GCS Patricia Hoffman, OTR/L, BCG Marvin Lawson, OTR/L, BCG June 11th, 2016 Objectives At the conclusion of this course, participants will be able to: • Be familiar with the most prevalent forms of dementia, reversible dementias, and general guidelines for clinical approaches • Be familiar with the stages of dementia based on the Global Deterioration Scale (GDS) • Understand clinically important differences between these stages of dementia and apply appropriate strategies to maximize function in each • Understand how to communicate and determine appropriate interventional strategies and goals to optimize movement in patients with dementia • Be able to document interventions and goals for patients with dementia that qualify for Medicare reimbursement Incidence, Cost, and Prevalence • 5.4 million Americans living with Alzheimer’s disease • Someone in America develops Alzheimer’s every 67 seconds • $226 billion spent by Medicare and Medicaid in 2015 • 60% of caregivers rate emotional stress as high or very high WHAT DO YOU THINK OF WHEN YOU HEAR THE WORD DEMENTIA? Mind shift: What they can’t do What they CAN DO What is Dementia? Dementia is progressive and marked by • Memory disorders • Personality changes • Impaired reasoning Common Types • Alzheimer’s • Vascular Dementia • Lewy Body Dementia • Parkinson's Disease Dementia • Fronto-temporal Dementia • Mixed Dementia Reversible • Depression • UTI • Medication side effects • Excess use of alcohol • Thyroid problems • Vitamin deficiencies • Delirium Keep this in mind • Problems with new learning/remembering new information • Old memories remain intact • Utilize procedural memory – Memories based on repetitive activity • Often present well into late stages of AD; highly impacted in PDD/LBD Brain Changes in Alzheimer’s Brain Changes in Alzheimer’s • Preserved in Alzheimer’s – Emotions – “They may not remember you, but they will remember how you made them feel” – Music and rhythm • Physical activity vs exercise – Potter et al How does this change the activities you would do with your client? Pharmacological Intervention’s for Alzheimer’s • Lessen symptoms and slow progression, does not cure the disease • 2 classes of FDA approved treatment • Cholinesterase Inhibitors – Exelon (Rivastigmine): early to moderate stages – Aricept (Donepezil): all stages • Glutamate Regulator – Namenda (Memantine): moderate to severe stages • Can be used in combination • Namzaric Evaluation and Screening Standardized Cognitive Assessments Mini-Mental State Exam (MMSE) • Widely used in medical practice – Learned performance • Takes 5 to 10 minutes • Cutoff – No impairment = 24-30 – Mild impairment = 18-23 – Severe impairment = 0-17 Montreal Cognitive Assessment MoCA • Gaining popularity • Takes 10 to 15 minutes • More sensitive than the MMSE for early dementia • Cutoff at 26 or greater = dementia not likely Short Blessed Test Short Blessed Test Writers Irving Shulman Gabriel Garcia Marquez Iris Murdoch Abe Burrows Global Deterioration Scale • Dr. Barry Reisberg • Neuroretrogenesis – Abilities are lost in the opposite direction they were learned – Treatment plan should follow that path – There are 7 specific stages of dementia progression • Collectively, these stages are called the Global Deterioration Scale 1 2 3 4 5 6 7 ? GDS/Cognitive Age Conversion STAGE GDS Normal Adult 1 Cognitive Age 25+ Aging Adult/MCI 2 18-24 MCI/Early Dementia 3 12-17 Early/ Mod Dementia 4 8-12 Moderate Dementia 5 5-7 Severe Dementia 6 2-5 Severe/ End Stage 7 0-2 Artists Willem de Kooning Norman Rockwell Stages of Dementia According to the Global Deterioration Scale Stage 1 • Short-term memory problems/loss is a key symptom • More stress you are under the greater your memory problems become • May or may not be pathological Stage 2 • Generally no problems functioning at work, at home or during leisure activities due to the use of compensatory strategies • No one knows that the individual is having lapses of memory Stage 3 I know, but nobody else does • The individual realizes that what is happening to his memory is not due to stress • Compensatory strategies are breaking down • Still no one knows….but the individual now knows Stage 4 Lost in Space: “What’s happening?” • The cat is out of the bag – Others are aware of disease • Placement often occurs now • Person continues to be socially appropriate • Person often depressed as he/she mourns the future • Learned “helplessness” can occur (3 Day Decline!) • Initial incontinence may occur • Potential elopement risk Stage 5 Dressed & ready, with nowhere to go • Maintains all social graces – • Continue to be concerned with how they look Individual no longer aware cognitive decline – Retains new information for about 5 minutes • Less frustration, depression • Always “Just Visiting” – • Elopement risk Potential balance deficits – Intrinsic and extrinsic Stage 6 Let’s Get Relaxed • May look disheveled – May lose dentures, eyeglasses, and/or hearing aides • Needs a jump start to do just about everything – Physical activity more important than ever • “90 Second Rule” usually works to attain continence • Altered temperature regulation – Often layers clothing due to feeling exceedingly cold Stage 6 – Continued • Gait pattern progresses to smaller step length, and shuffling feet • Visual changes – Usually lose peripheral vision – Visual gaze begins to drop and eventually will be about 1-2 feet in front – Depth perception erodes • Incontinence continues Stage 7 If it looks, feels or tastes good, I’ll do it • Dominated by senses • Not all behaviors are what you think they are (moaning could be pain or self entertainment) • Unable to express needs verbally, so you have to be a detective • May be in a wheelchair because of falls • Needs significant help with bed mobility, transfers • Walking – Requires assistance if able – Ability likely depends on prior activity level General Therapy Principles • Relate to function • Make it measurable and demonstrate medical necessity – Understand your skilled interventions • Focus on habilitation, not rehabilitation • Stage specific • Caregiver education General Behavioral Management • Identify and manage negative behaviors • Trial various methods – Reimbursable by Medicare – Make require several trials • Make sure you document – What, why, outcomes of trails – Skilled intervention General Communication Guidelines • Control the Environment – Simplify the space – Remove clutter – Provide a calm atmosphere – Eliminate or minimize background noise – Sufficient light, without glare – Sufficient warmth, eliminate drafts – Open vs closed environment Communication Example Teepa Snow Politicians Winston Churchill Margaret Thatcher Ronald Reagan GDS STAGES Interventions and Goals Overview GDS STAGES Interventions and Goals Overview: ICF Framework (WHO, 2001) GDS STAGE 1 Interventions and Goals I forget things – because I am stressed Preliminary Screening • Cognition: (Short Blessed) • Body function & structures: – Balance (TUG, DGI, 4 Stage Balance Test, Fullerton, FGA) • Dual Tasking for higher challenge – Functional Strength (5xSTS, 30sec STS, Arm Curl) – Posture (Occiput to Wall Distance) – Endurance (6 or 2 min walk) – Gait Speed • Activities and Participation: Family/patient identify GDS STAGE 1 Interventions and Goals I forget things – because I am stressed Goals: • Establish gold standard baseline • Document for future reference • Use to justify medical necessity GDS STAGE 2 Interventions and Goals Compensatory strategies Screens illuminate subtle changes • • Early gait deficits/falls may be early indicator – Alzheimer’s Association Compensatory strategies may appear exaggerated/rigid – Alarms – Lists – Routines (park in same spot, put keys in refrigerator) GDS STAGE 2 Interventions and Goals Compensatory strategies Interventions • Consider alternative strategies for communication and reminders – Color coding, signs. Consult Occupational Therapy – “Pill box” binder for Home Exercise Program • Challenging activities while minimizing frustration (Line dancing) • Introduce Power Exercises - Steves et al • Proactive home safety strategies and precautions GDS STAGE 2 Interventions and Goals Compensatory strategies Balance Considerations • Provide insight into deficits without overwhelming • Incorporate strengthening and balance components into routine activities – Laundry down steps (if safe) – Carrying groceries, helping to put dishes away – Dancing, bowling, singing in choirs • Posture awareness and remediation - Impairment level - Yoga GDS STAGE 2 Interventions and Goals Compensatory strategies Sample Goals for Stage 2 • Caregiver will verbalize understanding of environmental adaptations to eliminate clutter and minimize fall risk • Patient will ambulate independently outdoor uneven surfaces for >1,000 feet without loss of balance during house care activities (participation) • Patient and/or caregiver will adhere to home physical activity program to maintain activity levels consistent with AHA guidelines • Objective measures on standardized tests (e.g. TUG, 6 minute walk, sit to stand) GDS STAGE 3 Interventions and Goals I know, but nobody else does Screens illuminate subtle changes •Early gait deficits/falls may be early indicator – Alzheimer’s Association •Dual tasking difficulties correlate with Alzheimer’s •Compensatory strategies may not work consistently –Alarms –Lists –Routines (park in same spot, put keys in refrigerator) • Driving considerations GDS STAGE 3 Interventions and Goals I know, but nobody else does Interventions • Begin the conversation (caregiver suspects, train the trainer) • Consider alternative strategies for communication and reminders – Color coding, signs. Consult Occupational Therapy – “Pill box” binder for Home Exercise Program • Challenging activities while minimizing frustration (Line dancing) • Medications effective at early stage: Exelon and Aricept • Introduce Power Exercises • Proactive home safety strategies and precautions GDS STAGE 3 Interventions and Goals I know, but nobody else does Interventions (continued) • Begin to adapt environment to make movement easy – – – – Cushions on favorite chairs to raise seat height Hand rails on stairs Grab bars near showers, toilet, bathroom sink Stander security pole near bed • Looking Ahead – Introduce concept of new devices (rollator walker, stair glides) – Introduce new strategies for bed mobility(supine to sidelying to sit) – Address potential issues that might facilitate inertia GDS STAGE 3 Interventions and Goals I know, but nobody else does Balance Considerations • Provide insight into deficits without overwhelming family • Incorporate strengthening and balance components into routine activities – Laundry down steps – Carrying groceries – Dancing, bowling, singing in choirs • Posture awareness and remediation - Yoga GDS STAGE 3 Interventions and Goals I know, but nobody else does Sample Goals for Stage 3 • Caregiver will verbalize understanding of potential and progression of Dementia process • Patient and caregiver will transition/tolerate use of alternative devices (be specific about device and activity) • Patient and/or caregiver will adhere to home activity program to maintain physical activity levels consistent with AHA guidelines • Objective measures on standardized tests (e.g. TUG, 6 minute walk, sit to stand, posture) – With alternative devices or adaptations GDS STAGE 4 Interventions and Goals Lost in Space: What’s Happening? Screening •Medication and cognition: – May be on Aricept, Exelon, Razadyne, or progressed to Namenda – Potential side effects: Headache, constipation, dizziness, confusion, skin irritation •Utilize simple standard test: (TUG or DGI vs Berg) •Assess functional activities focusing on burden of care – Highlight assistance of spouse, caregiver – Focus on health and safety of spouse – Document and differentiate types of assistance (e.g., min physical, mod verbal) • Critical to depicting effects of Dementia GDS STAGE 4 Interventions and Goals Lost in Space: What’s Happening? Screening (continued) •Associate all objective changes with respect to safety, fall risk, efficacy: – – – – How long does getting down the stairs take? How long does car transfers take How long does it take to get in and out of bed? Did the person have a fall recently, or was found on the floor? •Consult Speech Language Pathology (SLP) to assess swallowing – Baseline assessment GDS STAGE 4 Interventions and Goals Lost in Space: What’s Happening? Interventions • Consider Senior Living Community (SLC) Placement – Factors include health of spouse, family and community resources, type of home • To remain at Home: – Safety adaptions: Wearable alert device, lighting, wandering strategies, bathroom safety (Patty and Marv?) – Utilize signs and landmarks to facilitate spatial awareness – Consider if these can be translatable to new environment • Consult Speech Language Pathology (SLP) for swallowing risk GDS STAGE 4 Interventions and Goals Lost in Space: What’s Happening? Interventions (continued) • Use repetitive, relevant, familiar tasks – Patient still able to learn – needs tactile and verbal cueing • Mobility: Teach new transfer sequence slowly with demonstration and high level of repetition – Example: Turn completely before you sit • Optimize all sensory systems – Minimize toxic and irrelevant distractors (TV, radio noise, annoying people) – Utilize pleasant and incentivizing facilitators (music, cooking smells (olfactory may be diminished), colors, circumstance validation, pleasant familiar pictures) GDS STAGE 4 Interventions and Goals Lost in Space: What’s Happening? Moving Considerations: • Results in immediate decline in functional level (learned helplessness) • “Just visiting” • Minimized through – Place integration – Way finding • May lead to depression GDS STAGE 4 Interventions and Goals Lost in Space: What’s Happening? Depression •Prevalent at this stage – – – – Client remains aware of deficits Others are aware Mourning future Displacement from homes (sometime of lifetime duration) •Evidence exists that physical activity reduces depression – Increased mobility and optimal functional correlated with decreased depression – Burden on caregiver and associated caregiver depression is growing issue in later stages GDS STAGE 4 Interventions and Goals Lost in Space: What’s Happening? Sample Goals for Stage 4 •Intervention focus shifts away from patient independence – Patient activity always with assistance – Caregiver performance with independence •Patient will ambulate 500 feet from bedroom to dining room, using a Rollator walker with minimal physical assistance and verbal cues of caregiver •Patient will ascend/descend 12 steps from bathroom to living room with a cane and railing, with minimal physical assistance and moderate verbal cues of caregiver •Caregiver will assist patient to adhere to home activity program safely consistent with AHA guideline GDS STAGE 5 Interventions and Goals Dressed and Ready, with Nowhere to Go Screening •Typical Profile – Likely progressed to Namenda – Unaware of their dementia (in the moment) – Dependent to live – No recall of relatively recent information (grand children) – Disoriented to time and place – Can’t travel independently but may wander away – Might have trouble picking out appropriate clothes • Mismatched shoes GDS STAGE 5 Interventions and Goals Dressed and Ready, with Nowhere to Go Screening •Typical Profile (continued) – Fall risk – Beginning of visual field loss – Know spouse and children – Can eat, dress, and often toilet after set-up – Act and converse appropriately – Enjoy social activities, music, singing, dancing – Mobile GDS STAGE 5 Interventions and Goals Dressed and Ready, with Nowhere to Go Interventions Strategies • • • • • • • • Cue to move slowly Employ situation-specific and purposeful strategies Use old photographs, familiar objects Increase shape and color contrast – Tape on grab bars Enhance lighting Make inaccessible heat sources, medication, cigarettes Resort to alternative ambulatory device (should be familiar from earlier stage) Caregiver counseling: Don’t correct, don’t get mad GDS STAGE 5 Interventions and Goals Dressed and Ready, with Nowhere to Go Interventions Strategies (continued) • • • • • • Environmental optimization safe mobility Strategic placement of grab bars Use assistive device, allow furniture walk Way finding Clutter reduction Home activity program entirely functional (well… try restorator) GDS STAGE 5 Interventions and Goals Dressed and Ready, with Nowhere to Go Sample Goals for Stage 5 • Caregiver will transfer patient sit to stand, bed to chair • • safely and independently Caregiver will assist patient to ambulate 500 feet from bedroom to dining room with appropriate device safely and independently Caregiver will assist patient in adhering to home physical activity program daily GDS STAGE 6 Interventions and Goals Let’s Get Relaxed Screening •Typical Profile – Gait deviation, motor coordination, significant – Visual perceptual skills degrade, include depth perception loss – Poor kinesthetic awareness (unaware of chair location during turning) – Increased physical sensitivity – Startles easily – Still wanders GDS STAGE 6 Interventions and Goals Let’s Get Relaxed Screening •Typical Profile (continued) – – – – – – Sexual urges Disheveled Speaks few words Responds better to tactile and visual cues 90 second rule Assess pain passively • PainAD GDS STAGE 6 Interventions and Goals Let’s Get Relaxed Interventions •Primarily caregiver training •Position yourself in patient’s view (on side 300) •Cue to initiate activity •Cue slowly, step by step – accommodate decreased kinesthetic awareness •Moderate tactile cues, physical assistance •Ambulation on level surfaces and stair still possible with assistance – Employ safe precautions – Remove distractions and potential physical hazards – Expect agitated and fearful behavior GDS STAGE 6 Interventions and Goals Let’s Get Relaxed Interventions (continued) •Caregiver instruction is critical for caregiver – Don’t correct – Expect agitation and fear – Don’t get mad – Seek assistance and counseling GDS STAGE 6 Interventions and Goals Let’s Get Relaxed Sample Goals for Stage 6 • Caregiver will transfer patient sit to stand, bed to chair • • safely and independently Caregiver will assist patient to ambulate 50 feet from bed to wheelchair with appropriate device independently Caregiver will follow home physical activity program daily to avoid range of motion loss, wound risk Caregiver Education Example GDS STAGE 7 Interventions and Goals If It Looks Good or Feels Good, I’ll Do It Screening •Typical Profile – – – – Patient’s cognition at level of child Driven by basic tactile and sensory needs Expect inertia May be ambulatory, but a great fall risk Intervention •Continued Caregiver Education – – – – – Situation and circumstance specific Basic ADLs, bed mobility Chair and bed positioning for skin integrity DME assessment Home activity program for maintenance GDS STAGE 7 Interventions and Goals If It Looks Good or Feels Good, I’ll Do It Sample Goals for Stage 7 •Caregiver will transport patient from bed to/from chair with appropriate device (e.g., Hoyer lift) independently and safely with minimal patient agitation •Caregiver will utilize protective equipment (e.g., hip protector) to enable safe mobility and transfers Actors Arthur O’Connell Arlene Francis Charles Bronson Geraldine Fitzgerald James Doohan Robin Williams Estelle Getty Margaret Rutherford Burgess Meredith Musicians Malcolm Young Tommy Dorsey Casey Kasem Glenn Campbell Rudolf Bing Caregiver Education Caregiver Education • Early and often • May be extensive • Ratio provided to client vs caregiver depends on stage • Include strategies to enable the caregiver – Relaxation techniques – – – – Communication strategies Education regarding disease process HEP programs Specific strategies to manage behaviors How to Document Caregiver Education • Document specifics – Note if additional time is required and why • Document the caregiver’s response – Need to highlight • • • • • Response Understanding Return demonstration Need for follow up Assist level and/or specific cues How to Document Standardized Tests • Time spent • Actual test that was performed • Score/outcome of the test • Normative value or evidence based cut-offs • Why the test is being utilized - “Cognitive baseline” - Identify appropriate GDS stage for appropriate POC Daily Documentation • • • • • • • Show skilled intervention Be specific about trials Explain why extra time/ trials are needed Note level of assistance for caregivers Emphasis on Objective portion Note minutes for each task Show progress – FOMs – Caregiver progress Take Home Point • If it is not written, it was not done! • Remember, a Medicare auditor, or another auditor may not know why the test is being performed, and will probably have no idea as to what the normative values are. Be sure to clarify Others Singer, Amy Grant – Caregiver for her Parents Rosa Parks Pat Summit B. Smith Harry Ritz Otto Preminger Actors Charlton Heston Rita Hayworth Questions? THANK YOU!