improving care for caregivers protocol conference... · predict intention to place measures of need...
TRANSCRIPT
10/3/2014
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Improving Care for Caregivers
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Goal of Presentation
• Describe TCARE® Protocol– Why developed
– Caregiver Identity Change Theory
– How developed
– How TCARE ® works works
• Explore the potential for adapting TCARE ® to grandparents (relatives) raising grandchildren.
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64 Million Family Caregivers Provide 80% of Long-Term Care Worth $450 Billion
• Family Caregivers help with:
– Dressing, bathing, feeding, etc.
– Finances, shopping, doctor visits, transportation, etc.
– Medical, financial, legal, insurance decisions
– Management and administration of medications and medical regimes
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Studies show that the presence of a Family Caregiver:
• Improves compliance with medical regimes
• Reduces length of hospital stays
• Reduces number of readmissions
• Prevents unnecessary doctor and ER visits
• Prevents or delays placement into an institution (assisted living)
• Improves quality of life
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Relatives as Parents
• 5.8 million children in homes of grandparents
• 1 million live with grandparents only
• 2 million live with other relatives
Responsibilities of RAPs
• Physical Care
• Emotional Care
• Financial Care
• Responsible for welfare of child
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The impact of family caregiving on the Caregiver….
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Drivers of Increased Health Care Costs
• Higher rate of:
– Diabetes
– High Cholesterol
– Hypertension
– COPD
– Heart Disease
– Depression
• Stress (though not a disease – a driver of decreased health status)
– Increased Stress: at home (more for sandwich generation)
– Increased Stress: at work
– Negative: effect of stress on personal life on work
• Time pressure
• Mental Fatigue
• Increased behavioral risk factors:
– Smoking
– Alcohol use
– Not taking charge of own health
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Documentation of Clinical Depression
30% to
9.3% to 14%
40%
0% 10% 20% 30% 40% 50%
Caregivers
Person wChronic
Condition
General pop.
Min Max
5.5 % to 14.6%
9.5 % to 22.4 %
Must assess the client “family”
• The client is the family
– Caregiver
– Care recipient
– Family Care context
• Current practice:
– Look at care recipient as only client
– View family as “visitor or servant”
Common Programs
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How do we help?
Rationale for Support
Burden
Care Exhaustion
Abuse
Placement
Support
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Rationale for Support
Burden
Care Exhaustion
Abuse
Placement
Support
Care Receivers’ Needs Do Not Predict Intention to Place
Measures of Need Intention to Place
Activities of Daily
Living (ADL) -.035
Instrumental
Activities of Daily
Living (IADL).040
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Caregiving Activities Do Not Predict Intention to Place
Hours in Past Week Intention to
Place
Personal Care .03
Housework .08
Transportation .08
Banking/Legal Matters .01
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Caregiver Identity Change Theory
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Theory Helps Us Understand
• Sources of caregiver distress
• Differences in the way that caregivers experience this distress
• Reasons that caregivers use or do not use services
• Strategies for helping caregivers
• Differences among caregivers in the types of support needed
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Basic Premises About Caregiving Journey
• There is no single, generic caregiver role
– Caregiving role emerges as an extension of a prior relationship
– Role is influenced by unique values, beliefs and circumstances
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Basic Facts about the Caregiving Journey
• Caregiving is a dynamic process that unfolds over time
• The length of the journey varies
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The Caregiving Journey is a Systematic Change Process
• Change in activities
• Change in the relationship with the care receiver
• Change in identity of the caregiver
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Caregiving Journey: Adult Child
0
10
20
30
40
50
60
70
0 1 2 3 4 5
H
O
U
R
S
Years
Bank Shop/Trans Household Other Tasks Personal
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Child-Parent RelationshipDecision Making
Personal Care
Household Chores
Shop & Trans
Legal & Banking
Affection
Affection
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Adult Child – Parent Relationship
Decision Making
Personal Care
Household Chores
Shop & Trans
Legal & Banking
Affection
Affection
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Caregiving Journey:Grandparent as
Parent
0
10
20
30
40
50
60
70
0 3 6 9 12 15
H
O
U
R
S
Age of Child
Personal & Health Shop/Trans Household School Legal Emotional
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Child- Grandparent Relationship
Personal Care
Shop & Trans
Affection
Affection
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When Gransparent Parenss
Decision Making
Personal Care
Household Chores
Shop & Trans
Legal & Banking
Affection
Affection
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The Identity Discrepancy Theory
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The Caregiver Journey
Caregiving Journey: Systematic Change Process
• Change in activities
• Change in relationship with care receiver
• Change in identity of caregiver
Phases of Caregiving
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Wife
Caregiver
Caregiver
Wife
Wife
CaregiverWife Caregiver
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WIFE
CaregiverWIFE
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Caregivers Experience Distress
• When their behavior doesn’t match their personal rules.
• “It’s not what you are doing -It’s how you feel about it”
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3 Types of Burden Evaluated
• Relationship Burden
– Strain between caregiver and care receiver
• Objective Burden
– Interference with other responsibilities and life activities
• Stress burden
– Anxiety, worry or nervousness
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Phases of Caregiving for RAP
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GP
Caregiver
Caregiver
GP
GP
CaregiverGP Caregiver
Relative
CaregiverRelative
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3 Types of Burden Evaluated
• Relationship Burden– Strain between caregiver and care receiver
• Objective Burden– Interference with other responsibilities and life
activities
• Stress burden– Anxiety, worry or nervousness
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Characteristics that Predict Intention to Place
Measures of Well-being Intention
to PlaceIdentity Discrepancy .239*
Relationship Burden .241*
Objective Burden .113*
Stress Burden .162*
Uplifts -.224*
Depression .137*
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* Statistically Significant
How was TCARE® developed?
TCARE®
Collaboration & Partnerships
• Florida, Georgia, Michigan, Minnesota Wisconsin, and Washington
• Wide range of agencies– Area Agencies on Aging
– Home Health Agencies
– Chapters of the Alzheimer’s Association
– ADDGS-Demonstration Projects
– Aging & Disability Resource Centers
– Private Care Managers
Series of Studies and Demonstrations
• Literature reviews & synthesis of findings
• Focus groups to share theory
– Caregivers
– Care Managers
• Measurement development
• Iterative development of protocol and tools
• Testing of protocol and tools
• Randomized studies
Characteristics of a Useful Assessment Tool
• Captures the full range of differences among family caregivers
• Sensitive to change
• Easy to use
• Understandable & transparent
• Instructive – Care manager knows how to use the information
to guide practice
The TCARE® Solution andImplementation Options
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Components of TCARE®
• Professional assessment• Decision algorithms and logic • Establish goals & strategies • Identify optimal local resources• Develop Tailored Care Plan with Caregiver• Continued Monitoring to ensure success of
Care Plan
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TCARE® Helps Identify
• Presence of depression
• Types and levels of stress
• Appropriate goals for supporting caregivers
• Strategies to meet goals
• Array of services consistent with goals and strategies
Step 1: Conduct Assessment
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Assessment Captures 5 Domains
1. Caregiver status2. Caregiver obligations3. Caregiver emotional & physical status4. Caregiver resources5. Care receiver status
• Diagnosis• Functional level (ADLs, IADLs, Behavior problems)
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• Compare scores against established norms for caregiavers
– Types and hours of Care
– Three Measures of Burden (stress)
– Depression
– ADLs & IADLs
Step 2: Interpret Assessment
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Requires Care Manager Expertise & Professional Judgment
• Does caregiver understand the care receivers type and level of need?
• Is the caregiver able to provide necessary care in safe manner?
• If not, are services available that will make the caregiver capable?
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Step 3: Create a Consultation Worksheet
• Identify a Primary Goal– Goal I: Maintain Current Identity– Goal 2: Embrace Caregiver Identity– Goal 3: Reduce Caregiver Identity
• Identify one or more of 5 support strategies • Include 3 or more specific resources or services
– Strategically selected (from generic catalogue of 99 possible resources)
– Tailored to reflect caregiver’s circumstance, preferences and availability in local community
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15 Service Categories
1. Adult day services2. Assistive technologies3. Counseling4.1 Education for caregiver
-To obtain information about services and assistwith planning for the future
4.2 Education for caregiver -Focused on psycho-emotional issues and coping skills
4.3 Education for caregiver-To acquire or improve caregiving skills
Service Categories (cont.)
5. Education for care receiver to reduce care needs or difficulty of tasks
6. Financial & Legal Services
7. Informal Supports & Services
8. In-home services
9. Living environments
10. Overnight respite
Service Categories (cont.)
11. Palliative and/or Hospice
12. Rehabilitation Services
13. Support Groups
14. Transportation
15. Medical/Behavioral Health Evaluations
Additional Categories
Child and Adolescent Services
Housing Options
Consultation Care Plan
• Recommended Goals
• Recommend Strategies (5 possible)
• Suggested Services
– Where and how to obtain
– How each service will help caregiver achieve goal
(How will it help me?)
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Step 4: Consult with the Caregiver
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Step 5: Create Care Plan
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Step 5: Create Care Plan
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Step 6: Conduct Follow-Up
• Re-Screen every 3-6 months or if a Trigger is identified
• Determines whether to;
– Conduct a re-assessment
OR
– Update previous Care plan
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Impact of TCARE®
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http://www.acl.gov/Programs/CDAP/OPE/ADEPP.aspx
TCARE® Intervention Study (4 State Study)
• Two longitudinal randomized controlled trials conducted;– Georgia
• 97 FCGs served by 12 care managers across three area agencies (2011), then expanded to:
– Georgia, Michigan, Minnesota and Washington• 266 FCGs served by 53 care managers across 20 social
service organizations (2011)
• Outcomes measured 3 types of FCG burden, FCG intentions to place, and depressive symptoms
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Findings From Randomized TCARE® Studies
• Care Managers– Offer a wider variety of services and supports– More consistent contact with caregivers
• Caregivers– Lower levels of identity discrepancy*– Lower levels of stress burden* – Lower levels of depression* – Lower levels of relationship burden*– Higher levels of uplifts* – Less intention to place in different care setting*
____________________________________________________________________________________________________________________
Statistically significant at p<.05
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Impact of TCARE® on Measures of Stress
12 month trajectories
Stress burden decreasing for group of caregivers served with TCARE®. Control group increasing.
Relationship burden decreasing for group of caregivers served with TCARE®. Control group increasing.
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Baseline Month 3 Month 6 Month 9 Month 12
Stre
ss B
urd
en
Stress Burden - Group by Time
TCARE Control
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Baseline Month 3 Month 6 Month 9 Month 12
Rel
atio
nsh
ip B
urd
en
Relationship Burden - Group by Time
TCARE Control
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Impact of TCARE® on Depression & Intention to Place
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Baseline Month 3 Month 6 Month 9 Month 12
Depression(CES-D) - Group by Time
TCARE
Control
12 month trajectories
Depression decreasingfor group of caregivers served with TCARE®. Control group increasing
12 month trajectories
Intention to PlaceDecreasing for group of caregivers served with TCARE®. Increasing for control group.
2
4
6
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Baseline Month 3 Month 6 Month 9 Month 12
Inte
nti
on
to
Pla
ce
Intention to Place - Group by Time
TCARE Control
In 2007, the WA State legislature mandated the use of evidence-based programs and selected TCARE® for the Family Caregiver Support Program (FCSP).
Study Results show benefits of TCARE® implementation
$3.3 million annual Medicaid cost savings ($12.3 million annual budget)
Delayed placement in LTC facility by 18 to 24 months.
20% fewer reports of caregiver clinical depression.
84% of care receivers using TCARE® reduced their use of Medicaid services
TCARE Success in Washington
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- WA State study published May 2014.
Benefits of TCARE®
• Standardized Assessment
– Guarantees equal opportunity for caregivers to obtain help
– Not dependent on individual care managers’ knowledge or skills
“Finally someone is asking
me the right questions.”
-WA State Family Caregiver
participating in TCARE®
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Benefits for Care Managers
• Informs intervention and care plans
– Focus on prevention-not crisis
– Focus on strategies-not services
– Basis for assessment of success
Benefits for Organization
• Potential savings as a result of: – Less time spent in crisis management
– Reduced costs that stem from inappropriate allocation of services
– Reduced costs that stem from the delay of needed support
– Prevention of unnecessary or premature placement
• Ability to document success
• Critical information to guide allocation of services
Quote from Caregiver
“I can’t tell you how much this meant to me.
It’s the first time in a long time that I didn’t
feel alone in this process.
I feel like I’m going to get some help and
like I want to run down the street and sing.
As a caregiver, for the first time in six
years, I felt hopeful that I was not
alone….”
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The TCARE® System
• Assessment and care management protocol,
– User Manual & Supporting tools
• Assessor training & certification
• TCARE-e: web based electronic format
• Licensed through Tailored Care Enterprises
• Ongoing technical support & consultation
• Continued research and development
Nuts and bolts ofAssessment Process
• 2 hours and 40 minutes of care management time– 1 hour for assessment
– 30 minutes to identify service options and tailor a “Care Options”
– 1 hour to consult with caregiver
– 10 minutes to record care plan
• Follow-up expected (3 months)
Assessor Training
• Training for care managers (Assessors)
– Approximately 8 hours of on-line training
– 1 Day In-person Training
– 2 Webinar sessions focused on case studies
• 1 ½ hour webinars
– Certification Exam
– On-going support
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http://www.tailoredcare.com
http://www.acl.gov/Programs/CDAP/OPE/ADEPP.aspx
For more information visit
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UWM Research Foundation © 2012