Care Consultation –
From Ohio to Georgia
Workshop:
Scaling Up Effective Caregiver Programs:
Best Practices and New Opportunities
Cynthia Holloway, RN
Program Manager, GA Care Consultation
Rosalynn Carter Institute for Caregiving
David Bass, PhD
Branka Primetica, MSW
Stefanie Moore, BA
The Benjamin Rose Institute on Aging
Presented at the ASA 2012 Aging in America Conference, Washington, D.C.
1 Care Consultation
•  A telephone-based information and support
service for adults with physical and mental
health challenges and their family caregivers
•  Personalized coaching and
advice to help clients manage
their own care situations
•  Offers ongoing support and
assistance throughout the
caregiving journey
2 History
An evidence-based program that was developed through a
series of research studies by the Margaret Blenkner
Research Institute of the Benjamin Rose Institute on Aging in
collaboration with many partner organizations:
–  Cleveland Alzheimer’s Managed Care Demonstration, 1997-2001
–  Chronic Care Networks for Alzheimer’s Disease Initiative, 19982004
–  Partners in Dementia Care for Veterans with Dementia and Their
Family Caregivers, 2006-2011
–  Integrated Care Management, 2005-2007
–  Development and Testing of the Care Network for Depression for
Older Adults and Family Caregivers, 2006-2009
–  Care Consultation Implementation in Cleveland, Ohio, 2009-2011
–  Care Consultation in Tennessee, 2009-2012
–  Care Consultation in three Georgia Area Agencies on Aging,
2010-2013
3 Key Features
•  Empowers clients to manage care and decision-making
more effectively
•  Helps clients find simple and practical solutions that are
not overwhelming or confusing
•  Helps clients find services and understand insurances
•  Facilitates effective communication with doctors and
other health care providers
•  Sustains a long-term relationship with clients
•  Is both standardized and personalized
•  Focuses on preventing crises by helping clients
prepare for change and plan for the future
4 Benefits
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Improved Care
Reduced Hospital Admissions
Delayed Nursing Home Placement
Fewer Emergency Department Visits
Decreased Symptoms of Caregiver
Depression and Strain
Reduced Caregiver Stress and Burnout
Reduced Relationship Strain
Decreased Embarrassment and Isolation
Improved Access to Information
5 Program Operations
•  A full-time Care Consultant and part-time Care
Consultant Assistant maintain a caseload of 75 to
125 clients
•  Care Consultants have bachelors or advanced
degrees in social work, nursing, or other related
fields
•  Care Consultant Assistants may be volunteers or
administrative staff who provide routine
monitoring, documentation, and mailings
•  Effective supervision and support
•  Effective interface with other services offered by
parent organization and its information technology
6 Types of Assistance
► Health- and Care-Related Information
•  Empower clients to manage their own situations
–  Give references and tips for finding needed
information
–  Send information from a repository of consumerready information
► Family and Friend Involvement in Care
•  Support and strengthen the informal network
–  Build consensus
–  Involve family and friends to help in different ways
–  Plan for future caregiving
7 Types of Assistance
► Awareness and Use of Community Services
•  Help clients learn about formal services
–  Increase awareness of available services
–  Explain how to find, access, and arrange for
services
–  Monitor quality, benefits, and need to change
services
► Coaching and Support
•  Coach caregiver and provide emotional
support
–  Encourage caregivers and be an empathetic
listener
–  Clarify the appropriateness of concerns and feelings
–  Link to counseling or case management, if needed
8 Key Components
Ini.al Assessment Ac.on Plan Maintenance and Support 9 Initial Assessment
►  Guide care receivers and primary caregivers in
identifying issues they would like addressed;
gradual process throughout first 4 months
Triggers:
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Yes/No questions to identify potential needs
Quick and easy to administer; saves time
Cover a variety of problem areas
Required; but answered both formally and informally
Detail Questions:
–  Optional; answered both formally and informally
–  Series of questions to obtain more in-depth information
about a Trigger that receives a “yes” response
10 Action Plan
►  Develop a simple, practical, step-by-step plan for
addressing clients’ priorities through collaboration
between the client and Care Consultant
Action Steps:
–  Achievable tasks assigned to one designated person
–  Target date to be accomplished
Action Checklist:
–  Mailed or e-mailed to clients
–  Displays current action steps and person responsible
–  1st list sent within three weeks; updated lists as needed
Action Step Follow-Up:
–  Address Action Step Status (e.g., accomplished, not
accomplished, ongoing) and Barriers to completion
11 Action Plan
12 Maintenance and Support
►  Build long-term relationship with clients that focuses
on prevention, maintaining rapport, and monitoring
the caregiving situation
Minimum Ongoing Contacts:
–  Standardized schedule of telephone contacts:
•  Every two weeks for first two months
•  Once per month during months 3 through 6
•  Every 3 months beginning month 7 and through
remainder of service use
Reassessment (same tool as Initial Assessment):
–  Captures changes and need for new Action Steps
–  Required sometime between month 4 (after Initial
Assessment has been completed) and month 12
13 CCIS
•  Care Consultation Information System (CCIS)
•  Computer-based information and record-keeping
system
•  Basic/Demographic Information:
–  Caregiver and Care Receiver Information
–  Other Contacts
–  Health Conditions
•  Key Components of Care Consultation:
Ini.al Assessment Ac.on Plan Maintenance and Support •  Resources
14 Georgia Care Consultation
•  Addresses Needs:
* Growing waiting lists
* Underserved clients
* Accessible and supportive program
“Thanks MaryEllen, you are such a blessing and I truly feel a
moment of peace in a world of confusion,” Care Consultation
Caregiver
15 Area Agency on Aging Sites
•  Atlanta Regional Commission in Atlanta, GA
- Serving 10 urban counties
•  Legacy Link in Gainesville, GA
- Serving 13 rural/resort counties
•  Heart of Georgia in Baxley, GA
- Serving 17 rural counties
“Thanks for all of your concern and knowledge. You have NO IDEA
how important it is for me!” Care Consultation Caregiver
16 Care Consultation Training
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Intervention and CCIS Training
Site Gateway Staff Training
Alzheimer’s Basic Training
Across Site Problem Solving
“It is good to know I can reach out and there is someone who I
can touch and get a hold of,” Care Consultation Caregiver
17 Enrollment Criteria
•  Caregivers and care receivers
•  Care Receivers living in the community
•  Care Receivers living in Assisted Living
facilities
•  Care Receivers living in Rehabilitation facilities
•  With or without a diagnosis
"The Care Consultation program assisted us greatly in getting
through the toughest times and helping us sort things into
manageable pieces that we could handle,” Care Consultation
Caregiver
18 Marketing Care Consultation
•  Internal Marketing
o 66% of referrals
•  Community Marketing
o 33% of referrals
“My husband and I are very grateful for the Care Consultation
program!“ Care Consultation Caregiver
19 Why the need for
Internal Marketing?
Barriers to Enrollment Atlanta Regional Commission: •  3500 calls per month for service
requests
•  12 ARC Gateway staff
•  Average of 16 calls per day
•  Offering 73 initiatives
•  Little contact between Care Consultant
and Gateway staff
•  Gateway staff not centralized
•  10 Satellite counties utilize different staff
20 Compared with:
Heart of Georgia •
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900 calls per month 4 Gateway staff Average 7.5 calls per day Offering 30 ini.a.ves Small building with maximum contact between staff Gateway staff centralized Legacy Link •
•
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•
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600 calls per month 6 Gateway staff 3.33 calls per day Offering 30 ini.a.ves Small building with maximum contact between staff Gateway staff centralized 21 AAA Internal Marketing
•  Educate satellite counties through personal visits
and regional meeting
•  Relocated Care Consultant’s office space within
the Gateway staff
•  Provide Gateway staff with daily visual reminders
•  Send Gateway staff a weekly enrollment update
•  Send personal e-mail thank you notes for each
referral
•  Offer program to co-workers through HR
department
•  Recruit AAA marketing champions
•  Recruit marketing volunteers
22 Referral Numbers
23 Community Marketing
No results from:
•  AARP
•  DFCS
•  Health & Rehabilitation
Companies
•  Hospital Discharge
Planners
•  Human Resources
Departments /Companies
•  Lewy Body Association
•  Parkinson’s Association
•  Retirement Communities
Produced results:
•  Adult Day Care Programs
•  Alzheimer’s Association
•  Caregiver Conferences
•  Churches & Synagogues
•  Dementia Support Groups
•  Elder Attorneys
•  Home Health Companies
•  Physicians Groups
•  Press Releases
•  Rosalynn Carter Institute
•  Senior Centers
•  Senior Health Fairs
•  Stroke Support Groups
•  Word of Mouth
24 Future Targeted Marketing
Target: Employee Assistance Programs
GA Care Consultation Working Caregivers (n=315)
Caregiver Employed
%
-­‐  Homemaker
34%
7%
28%
8%
-­‐  Unemployed
23%
-­‐  Full-Time
-­‐  Part-Time
-­‐  Retired
25 Care Consultation Enrollment
(Table 1)
After 12 months of implementation:
•  762 referred to Care Consultation
•  442 (58%) of referred enrolled
•  Two-thirds of referrals internal from
AAAs; one-third external
•  72.4% of enrolled remain in or
completed program period
26 Caregiver and Care Receiver
Demographics (Table 2)
•  Nearly 85% of caregivers and 70% of
care receivers were female
•  Large percent of caregiving daughters;
small percent of caregiving spouses
•  One-third African Americans
•  Caregiver mean age is 59.6; Care
receiver mean age is 80.2
27 Care Receiver Functioning and
Dementia Diagnosis (Table 3)
•  High levels of impairment compared with
most samples
–  On average, needed assistance with 4
of 6 personal care tasks; two-thirds
dependent in bathing, dressing,
grooming
–  All needed assistance with all daily
living tasks
•  90% had a dementia diagnosis
28 Unmet Needs (Table 4)
Most to least common unmet needs: 1.  Arranging for services 2.  GeOng respite 3.  Understanding memory problems 4.  Finding alterna.ve living arrangements 5.  Comple.ng daily living tasks 6.  Managing medica.ons 7.  Dealing with legal or financial issues 8.  Organizing family care 9.  GeOng emo.onal support 10.  GeOng medical care 29 Caregiver Strain, Depression,
and Self-Rated Health (Table 5)
•  Isola.on and emo.onal strain most common –  Larger por.on (two-­‐thirds) than other samples with “high” isola.on and emo.onal strain •  One-­‐third with other types of strain; similar to other samples •  One-­‐third at risk of clinical depression •  One-­‐fourth have health vulnerabili.es; “poor” or “fair” self-­‐ra.ng 30 Contact Types for Enrollees in Care
Consultation 180+ Days (Table 6)
•  2,240 contacts with Care Consultants •  Averaged 11.55 contacts •  79.7% (1785) contacts by telephone (100% at least one) •  10.1% (228) contacts by regular mail (62.9% at least one) •  9.4% (211) contacts by e-­‐mail (26.8% at least one) 31 Direct and Indirect Time for
Enrollees in Care Consultation
180+ Days (Table 7)
•  Average indirect time per contact – 10.5
minutes (standard deviation = 5.1 minutes)
•  Average direct time per contact – 7.6 minutes
(standard deviation = 5.2 minutes)
•  Average total time per contact – 18.1minutes
(standard deviation = 8.0 minutes)
32 Initial Assessment: Care Receiver
Assessed and Triggered Domains
for Enrollees in Care Consultation
180+ Days (Table 8)
•  Vast majority of enrollees have all domains assessed
•  Most common triggered care receiver domains:
–  Memory problems and difficult behaviors (50.5%)
–  Arranging services (41.2 %)
–  Financial concerns (40.2%)
–  Legal decision-making (35.6%)
•  Least common triggered care receiver domains:
–  Driving (9.8%)
–  Memory problem diagnosis (12.9%)
–  Personal and home safety (18.0%)
•  No one domain or small group of domains dominates
33 Initial Assessment: Caregiver
Assessed and Triggered Domains
for Enrollees in Care Consultation
180+ Days (Table 9)
•  Vast majority have all domains assessed •  Most common triggered caregiver domains: –  Emo.onal and physical health strain (44.8%) –  Arranging for services (38.7%) –  Capacity to provide care (35.1%) •  No one domain or small group of domains dominates 34 Assigned Action Steps for
Enrollees in Care Consultation
180+ Days (Table 10)
•  Average of 4.1 assigned Action Steps
–  796 total Action Steps
–  12 largest number Action Steps
•  70.5% (561) Action Steps assigned caregivers
–  87.6% at least one
•  26.3% (209) Action Steps assigned care
consultants
–  53.1% with at least one
•  Few Action Steps assigned to care receivers
35 Current Action Step Status for
Enrollees in Care Consultation
180+ Days (Table 11)
•  43.5% (342) Ac.on Steps accomplished or modified-­‐accomplished •  3.6% (29) Ac.on Steps not accomplished •  49.4% (393) Ac.on Steps s.ll in process •  Average 1.78 Ac.on Steps accomplished or modified-­‐accomplished –  Approximately 70% with at least one –  Largest number accomplished was 9 36 Action Step Content Areas for
Enrollees in Care Consultation
180+ Days (Table 12)
•  Three content areas account for 42.9% of Ac.on Steps: –  Benefits 19.0% (153) –  Legal or financial services 12.8% (103) –  Management of medical symptoms 11.1% (89) •  One-­‐third of Ac.on Steps involve accessing services •  Percent with at least one Ac.on Step by content area: –  Benefits 46.9 % (153) –  Legal or financial services 36.1% (103) –  Management of medical condi.ons 33.5% (89) –  Interac.ng with health care providers 25.8% (55) –  Symptom management 25.8%(55) 37 Implementation Successes
& Challenges
Organizational Culture and Buy-In
•  Level of enthusiasm for a different way of delivering a
service for caregivers and persons with dementia
Staffing & Training
•  Willingness to learn a new service and shift job
responsibilities
Marketing & Recruitment (internal & external)
•  Internal and external recruitment sources
System Re-Structuring
•  Shift from case management to new service model for
appropriate cases
Payment Sources
•  Identify new funding streams…
38