The Savvy Caregiver Program

1
The Savvy Caregiver Program

• Ken Hepburn, PhD
• Nell Hodgson Woodruff
• School of Nursing
• Emory University

2
BackgroundRandomized Trials

• Two NINR-Funded Trials
• (1992-2000)

• Community Caregivers
• Treatment/Waitlist Control Design
• Hypothesis Treatment Group less
• Distressed than Controls

3
Developmental Issues Across the two Studies

• Reduced from 7 to 6 Sessions
• Decreased Family Focus
• Increased Focus on Role Acquisition
• and Decision Making

4
Main Measure Distress

• Composite Measure that includes 12 separate
  scales
• Factor Analytically Developed
• Weights Based on Factor Loadings
• Standardized to a Mean of 50
• With a Standard Deviation of 10

5
The Distress Story - Second Study
C53.60
54
C53.29
D I S T R E S S
ns P.095
53
P.04 by ANCOVA
E51.88
E52.63
52
E51.70
51
C50.56
50
baseline
6-month
12-month
6
Conclusions

• Controls are significantly more distressed than
  Experimentals at 6-month
• Six-Month Between-Group Significant Effect on
  Distress Erodes but Within-Group Remains at one
  year
• Prevents/Retards Within Group Increase in
  Experimental Group Distress over 1 year
• Similar Effect with Burden
• Does not Affect Interpersonal Variables
• (Relationship and Loss of Self)

7
Translation Problem How to Transport Success?

• Challenges
• Replicating Teaching Strategies
• and Content Expertise
• How to package what faculty know and teaching
  strategies that worked
• so program can be provided by others?
• Maintaining Program Integrity
• How to assure that putting the program in someone
  elses hands wont just result in that person
  converting it to his/her own purposes?
• Incorporating Illustrations
• How to include demonstrations based on principles
  from other disciplines
• (e.g., occupational or music therapy)?

8
Solution The Savvy Caregiver

• Grant support from Alzheimers Association and
  local foundation (UCare, Minnesota)
• Through an Iterative Process (3 cycles),
  Developed
• Trainers Manual
• Detailed curriculum map (what teach when, for how
  long, and to what learning end ) instructions
  for talks and exercises slides and handouts
  homework assignments
• Caregivers Manual
• Text for the course all of the material for
  talks is included, plus assigned readings
  caregivers receive copies of slides
• Training Video
• Three-part video dementia stage presentation
  decision making putting the Savvy Caregiver
  guiding principles into practice
• CD-ROM (Optional)
• Separately developed, includes content materials
  and stage presentation

9
Developmental Activities

• Field Testing Included
• facilitator debriefing
• post program formative data gathering
• No-control pre-post testing
• Development activities led to
• Readable and User-Friendly Manuals
• Additional AV materials (e.g. on decision making)

10
Developmental Activities

• Curriculum Development and Testing in
• Minnesota and Denver
• What talks and exercises worked?
• How did written materials go over?
• How did AV materials go over?
• What issues did facilitators encounter?
• What impact did program have on Caregivers?

11
Field Test (Formative) Results

• Effective for Caregivers (N88)

5. Strongly Agree
4. Agree A Little
4. 5. Total
87.5 10.7 98.2
More Knowledgeable
78.9 19.3 98.2
More Skillful
73.7 22.8 96.5
More Confident
67.8 25.0 92.8
Content Relevant
Useful Strategies
82.1 14.3 96.4
12
Formative Results

• Acceptable to Caregivers (N56)

5. Strongly Agree
4. Agree A Little
4. 5. Total
74.1 22.2 96.3
Manual Understandable
80.7 15.8 96.5
Manual Tied in with Class
63.6 25.5 89.1
Will Use Manual in Future
72.0 25.6 97.6
CD-ROM Useful (n43)
CD-ROM tied in well
67.4 30.2 97.6
91.2 8.8 100.0
Trainers Effective
89.1 10.5 99.6
Class Info Clear
Would Recommend
93.0 7.0 100.0
13
Non-Experimental Results -- Impact on Caregivers
(N57) 3-4 month pre-post trial
Variable All
p. Denver
(21) p.
Response to pre 8.77
9.74 Memory
Probs post 7.70 .089
7.30 .052 (RMBPC)

Response to pre 8.20
10.42 Behavior
Probs post 6.68 .022
8.26 .126
Response pre 30.39
36.24 Total
post 25.81 .023
27.61 .029

Zarit pre 38.66

45.15 Burden post 36.32
.064 40.95
.109
Beliefs pre 47.69

47.18 (Monitoring) post 49.77
.009 50.71
.018
14
Testing the Savvy Caregiver Program(following
field trials)

• Randomized (Waitlist Controls)
• Same Measures and consent as NINR Trial
• Tested in Colorado, Mississippi, and Alaska
• Wide variety of program leaders
• social workers, patient educators, public health
  nurses,
• recreation therapists

15
Study Sample

• About 40 caregivers in each group
• More adult children than in our previous
  randomized trials here
• 70 women
• Well-educated (as in previous trials)
• Non-Hispanic White

16
The Savvy Distress Story
52
C51.31
D I S T R E S S
51
E51.66
E50.94
50
49
Between Group Difference p .030 Within Control
Group Difference p .044
C48.67
48
47
6-month
baseline
17
Results

• Substantially Identical to NINR Trial
• Significant Effects on
• -- Distress
• -- Mastery
• Good Evidence for Fidelity to Program
• Glowing anecdotal material

18
Limitations

• Done at a Distance (things we dont know) by
  people with their own agenda
• Homogenous Group no Diversity
• A Fair Number of non-adherent participants (no
  data)

19
RE-AIM Issues Overall
Will Guide Implementation of AOA projects
HOWEVER
RE-AIM Issues since Savvy Development Reach
No Organized (or supported) Program Dissemination
beyond Colorado and Alaska Purely Opportunistic
20
RE-AIM Issues Effectiveness
No centralized evaluation Positive
Reports Sustained Use
RE-AIM Issues Adoption
-- Northern California Upstate NY -- Other sites
21
RE-AIM Issues Implementation
Local Variations Introduced (e.g., Colorado) Some
evaluation, but not head-to-head
RE-AIM Issues Maintenance
Only evidence is sustained use -- e.g., in
Colorado
22
A Second Translation Problem Cultural
Transformation
Cuidando con Respeto -- a work in progress

• Key Issues
• Overall Program Purpose
• Concept Transformation (e.g., Caregiver)
• Didactic Transformation
• (telenovelas and games)
• Defining Target Learners
• Delivery Strategies (sessions)
• Authorial Partnership