10/3/2014

1

Improving Care for Caregivers

1

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.

2

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

3

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

4

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

10/3/2014

2

The impact of family caregiving on the Caregiver….

7

5

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

8

9

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

11

How do we help?

Rationale for Support

Burden

Care Exhaustion

Abuse

Placement

Support

10/3/2014

3

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

14

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

15

Caregiver Identity Change Theory

18

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

19

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

20

10/3/2014

4

Basic Facts about the Caregiving Journey

• Caregiving is a dynamic process that unfolds over time

• The length of the journey varies

21

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

22

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

23

Child-Parent RelationshipDecision Making

Personal Care

Household Chores

Shop & Trans

Legal & Banking

Affection

Affection

24

Adult Child – Parent Relationship

Decision Making

Personal Care

Household Chores

Shop & Trans

Legal & Banking

Affection

Affection

25

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

26

10/3/2014

5

Child- Grandparent Relationship

Personal Care

Shop & Trans

Affection

Affection

27

When Gransparent Parenss

Decision Making

Personal Care

Household Chores

Shop & Trans

Legal & Banking

Affection

Affection

28

The Identity Discrepancy Theory

29

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

32

Wife

Caregiver

Caregiver

Wife

Wife

CaregiverWife Caregiver

10/3/2014

6

WIFE

CaregiverWIFE

33

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”

34

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

35

Phases of Caregiving for RAP

36

GP

Caregiver

Caregiver

GP

GP

CaregiverGP Caregiver

Relative

CaregiverRelative

37

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

38

10/3/2014

7

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*

39

* 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

44

10/3/2014

8

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

45

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

47

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)

49

• Compare scores against established norms for caregiavers

– Types and hours of Care

– Three Measures of Burden (stress)

– Depression

– ADLs & IADLs

Step 2: Interpret Assessment

50

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?

51

10/3/2014

9

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

52

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?)

57

10/3/2014

10

Step 4: Consult with the Caregiver

58

Step 5: Create Care Plan

59

Step 5: Create Care Plan

60

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

61

Impact of TCARE®

62

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

63

10/3/2014

11

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

64 65

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.

7

8

9

10

11

12

13

14

15

Baseline Month 3 Month 6 Month 9 Month 12

Stre

ss B

urd

en

Stress Burden - Group by Time

TCARE Control

7

8

9

10

11

12

13

Baseline Month 3 Month 6 Month 9 Month 12

Rel

atio

nsh

ip B

urd

en

Relationship Burden - Group by Time

TCARE Control

66

Impact of TCARE® on Depression & Intention to Place

7

8

9

10

11

12

13

14

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

8

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

67

- 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®

69

10/3/2014

12

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….”

72

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

10/3/2014

13

http://www.tailoredcare.com

http://www.acl.gov/Programs/CDAP/OPE/ADEPP.aspx

For more information visit

76

UWM Research Foundation © 2012