Creating Better Lives for People with Dementia

Transcription

1 Creating Better Lives for People with Dementia PRESENTED BY: Kim Warchol, OTR/L Founder and President of Dementia Care Specialists LeadingAge/LALA Conference Objectives 1. Identify prevalence and characteristics of chronic, progressive dementia types 2. Understand the value of implementing abilities-focused dementia care to facilitate positive outcomes 3. Identify key characteristics of each dementia stage, the corresponding best ability to function, and approaches to optimize function, safety and quality of life. What is Dementia Dementia is not a disease itself but a group of symptoms that may accompany certain diseases or conditions. Symptoms = The loss of intellectual/cognitive functions of such severity to interfere with a person s daily functioning. IADL deficits BADL deficits One Classification: Reversible, chronic, chronic and progressive 1

2 Dementia Classification Reversible- Examples:Hypothyroidism, Vitamin B12 deficiency, Lymes Disease Chronic- Examples: TBI or Stroke Chronic, Progressive- Neurodegenerative diseases including ADRD Reversible = Chronic = Progressive = About ADRD Alzheimer s Disease and Related Dementias (ADRD) are chronic and progressive and include: Alzheimer s Disease (AD) Lewy Body Dementia Vascular Dementia Frontotemporal Dementia Mixed Dementias ADRD move through rather predictable stages of decline Abilities remain at every stage/cognitive level 2015 Alzheimer s Disease Facts and Figures Report Estimated Number of Americans with Alzheimer s Disease: 5.3 million Americans of all ages -includes estimated 5.1 million age 65+ One in nine people age 65 and older (11 percent) About one-third of people age 85 and older (32 percent) have Alzheimer s disease #1 risk factor is age NOTE: Alzheimer s Disease is vastly underdiagnosed 2

3 Power of Our Perspective Our perspectives and beliefs become our reality and shape what is possible. Let s Check Your Paradigm Paradigm = A Belief Negative Perspective 1. Suffering from dementia 2. Can t do anything anymore 3. A wanderer 4. A rummager 5. Confused 6. Agitated 3

4 What s Possible When We Look through a Lens of Abilities CAN T Do CAN Do Shift to Focus on Abilities CAN T DO Wanderer CAN DO Rummager Confused Agitated Can t do anything anymore Suffering Shift Focus on the Person-Not the Disease Preferences Personality Interests Routines Habits 4

5 Shift Focus from Rehabilitate to Habilitate For chronic, progressive dementias we need to change our thinking: From Rehabilitate to Habilitate From fix and recover to maximize function through use of remaining abilities Dementia and Cognition Dementia = Cognitive Impairment Cognition = Mental processes involved in acquiring and processing information Ability to pay attention to, perceive, remember, and make real world decisions. Cognition is an overarching factor in all areas of function, roles, activities and participation. Cognition Determines Performance Ability FUNCTION (Occupational Performance) Cognition Physical Sensory Mood & Behavior Cognition is primary determinant of level of function possible. 5

6 Creating Better Lives for People with Dementia We can t separate function from cognition. ~ Kim Warchol There are various degrees of cognitive capacity and they must be understood. Therefore, cognitive capacity must be assessed to some level, in all settings. Consider This Expectations? Approach? Learning and attention ability? Possible to live alone? ELDER ADULT TEEN-AGER TODDLER INFANT 6

7 Cognitive Level/Dementia Stage & Level of Independence Possible High Early Low Early Distant Supervision Close Supervision Middle Late 1:1 Limited 1:1 Extensive End Total Assist The Dementia Epidemic and Impact No cure in sight Persons with dementia at high risk of: Depression Comorbidities Pain Disengagement Injury Over-used psychotropic medications Hospitalization/use of ER Functional Decline and Excess Disability Excess Disability Negative Cycle Dependence or Excess Disability Facility Challenges Health Complications Hospitalizations Behavior Problems 7

8 Creating Better Lives for People with Dementia Honor the Person Cognitively Capable Engage in Meaningful Activity to Best Ability Habilitate and Compensate Better Lives Begins with Active Engagement Active Engagement Less Care Burden Good Health Less Hospitalizations Positive Mood/ Behavior 3 C s for Successful Dementia Care Cognitive Level Can Do Compensatory Care 8

9 Cognitive Level: Assessments and Screens 3 C s - Cognitive Level Informant Screen Cognitive Level Best Ability to Function Brief Observation Screen Approach Standardized Functional Cognitive Assessment Support Common Cognitive/Dementia Staging Screens and Assessments Functional Assessment Staging Tool (FAST) Global Deterioration Scale (GDS) Cognitive Disabilities Model by Claudia Allen 9

10 Creating Better Lives for People with Dementia Defining Stages Dr. Barry Reisberg s Theory of Retrogenesis: First in, last out & Back to birth Never treat elders like children but some correlation to developmental abilities Brief assessments such as Functional Assessment Staging Tool (FAST) Claudia Allen s Cognitive Disabilities Model: - Each cognitive level describes abilities - In-depth assessments often administered by trained therapists (Occupational Therapy) Cognitive Disabilities Model (CDM)Claudia Allen, OT Functional Cognitive Assessments - Identifies Cognitive Level and best ability to function (BATF). Administered by trained therapists. preserved abilities at each stage CAN DO Describes Provides framework to Compensate and create task equivalence. Assessments Associated with the Cognitive Disabilities Model-Allen Levels Novel = Allen Cognitive Level Screen (ACLS and Large ACLS) Allen Diagnostic Manual (ADM)projects Familiar = Routine Task Inventory-Expanded (RTI-E) Skilled Observation The Assessments test from lowest cognitive level (ability to respond to a stimulus) to MCI and Normal Cognition. 10

11 Creating Better Lives for People with Dementia 3 C s for Successful Dementia Care Cognitive Level Can Do Compensatory Care 3 C s - Can Do Abilities Remain at Every Stage of Dementia What are the possibilities if.. We see what the individual with Alzheimer s/dementia can do. ~ Kim Warchol 11

12 3 C s - Can Do Benefits an occupation-focused health promotion approach to well-being embraces a belief that the potential range of what people CAN DO is the primary concern, and health is a byproduct. ~ AOTA Statement: Occupational Therapy in the Promotion of Health and Well-Being 3 C s - Compensatory Intervention Habilitate (focus on can do) and compensate to create success 3 C s - Compensatory Intervention Adaptations to activity demands and the performance environment that enable a client to resume performance of valued occupations even when deficits.are not amenable to change. May include: Modify task demands [to create task equivalence] Modify pattern of performance Modify environment Source: OT Practice Guidelines for Those with ADRD, 2010 AOTA 12

13 Compensate =Adapt Includes: Adapt approach- Gain trust and agreement Adapt activity Just right challenge Adapt environment- To support, not disable 3 C s - Compensatory Care Cognitive Level Activity and Environmental Demand The key to effective intervention with a person with cognitive challenges is to equalize the activity and environmental demands to the person s capabilities. Source: OT Practice Guidelines for Those with ADRD, 2010 AOTA Cognitive Levels/Dementia Stage Level 1:End Stage Dementia Level 2: Late Stage Dementia Level 3: Middle Stage Dementia Level 4: Early Stage Dementia Level 5: Mild Cognitive Impairment Level 6: No Cognitive Limitations 13

14 Level 1/End Stage Highest Level of Independence= Total dependence Approx. Developmental Age Abilities = 0-12 month old Care Goals = Quality of life, safety and health End Stage/Allen Cognitive Level 1 = Automatic Actions CAN DO Abilities = Respond to stimulation, smile, facial expressions, swallow, limited movement of extremities, eye tracking Compensatory Intervention Ideas: - Provide total care informing of next step, move slowly, wait for awareness and minimal response - Use meaningful sensory stimulation to promote use of remaining abilities to maximize health and quality of life Abilities At End Stage Let s see what is possible! (video) 14

15 Level 2/Late Stage Highest Level of Independence = 1:1 Extensive Assist Approx. Developmental Age Abilities = months Care Goals = Function, Quality of life, safety and health Late Stage/Allen Cognitive Level 2 = Postural Actions CAN DO Abilities = Sit, stand, walk, gross motor skills, few word vocabulary, gross grasp on food/drink to feed self partial meal, follows 1 step inconsistently Compensatory Intervention Ideas = - Break simple, familiar activity into single steps - Use 3 types of cues to gain attention and processing - Wait for response - Encourage gross motor abilities - Complete other aspects of activity - Eliminate distractions Abilities at Late Stage Let s see what is possible! (video) 15

16 Level 3/Middle Stage Highest Level of Independence = 1:1 Limited/extensive Assist Approx. Developmental Age Abilities = 18 month 3 y/o Care Goals = Function, Quality of life, safety and health Middle Stage/Allen Cognitive Level 3 = Manual Actions CAN DO Abilities = Use hands to hold and manipulate objects, follow 1 step commands to be sequenced, notes cause and effect, better fine motor coordination, strong long-term memory Compensatory Intervention Ideas = - Provide safe, familiar supplies - Break familiar activities into single steps - Sequence through steps using 3 types of cues - Wait for response - Encourage gross and fine motor participation - Complete activity as needed to avoid frustration - Praise participation Abilities at Middle Stage Let s see what is possible! (video) 16

17 Level Low 4/Low Early Stage Highest Level of Independence= Low Early Stage = Close Supervision, set-up, reminders Approx. Developmental Age Abilities= 4-6 y/o Care Goals = Function, Quality of life, safety and health Low Early Stage/Allen Cognitive Level Low 4 = Goal Directed Activity CAN DO Abilities = Aware of the goal of an activity; thrives on routine and familiar, able to sequence self through steps of simple and familiar activity; some problem solving ability, partial new learning (especially if highly valued activity) Compensatory Intervention Ideas = Tap into long-term memory with the familiar Provide set-up to prompt initiation Provide close supervision/assist for problem solving If teaching something new, make sure it is valued and simpleexpect partial learning Abilities in Allen Cognitive Level 4 Let s see what is possible! (video) 17

18 Level High 4/High Early Stage Highest Level of Independence= Distant Supervision or in-person daily checks (more oversight in certain circumstances) Approx. Developmental Age Abilities- 7-10/12 y/o Care Goals = Function, Quality of life, safety and health CAN DO Abilities = Aware of the goal of an activity; thrives on routine and familiar, able to sequence self through steps; better problem solving ability, new learning (especially if highly valued activity) Activity Adaptation= Tap into routines and the familiar Communicate concretely Provide memory aides and supports Provide assist for problem solving If teaching something new, make sure it is valued We Believe People can co-exist with dementia and lead a quality life at every stage. Goal = Meet the person where they are at that stage and prioritize the PERSON We must empower and support care partners. Goal = Gain skills and access to support and resources We must create a Dementia Capable society. Goal = A world adapted, supportive and accepting Thank you for helping to create better lives for people with dementia! 18