Transcript Slide 1
Noëlle Merrill, Eastern Area Agency on Aging
Deborah Poulton, Eastern Area Agency on Aging
Lenard Kaye, University of Maine Center on Aging
Jennifer Crittenden, University of Maine Center on Aging
Coös County Grafton County
Sullivan County Monadnock Region
Caregiver Connections
1.866.634.9412
“Uniting Communities to Support Family Caregivers”
Sarah Harpster
Kimberly Phillips
Monadnock ServiceLink Aging
and Disability Resource Center
UNH Center on Aging and
Community Living
The Harry and Jeanette Weinberg Foundation have
provided $8.1 million dollars to support family and
informal caregiver projects countrywide.
Three year grants, averaging $300,000 per year
were awarded to 14 non-profits nationwide.
Both the Eastern Area Agency on Aging (ME) and
Monadnock Collaborative (NH) were funded
beginning September, 2009 .
Large geographic area with no
people
4,000 square miles with few roads
Rural, isolated, high poverty rate
and few services
Average of 23 residents per square
mile
Islanders
Oldest state based on median age
Restrictive Nursing Home Eligibility
Rural and economically disadvantaged regions as
compared to other counties in Maine
Lack of healthcare access
High chronic disease burden
Rapidly aging population
Limited or no public transit
“You can’t get there from here”
75% of all care received by older adults in the US is
provided by family members and friends.
Many do not consider themselves caregivers.
Majority of caregivers are middle aged women.
Unpaid caregivers will continue to be the largest
source of long term care services in the United
States.
(Sources include National Alliance for Caregiving and AARP)
Caregiver Connections
“Uniting Communities to Support Family Caregivers”
Caregiver Connections: Partnerships at Every Level
Project Schematic
Oversight: Steering Committee (leaders from each County); Monadnock
Collaborative (fiscal agent); state level experts
Leadership
Monadnock
SLRC
(Monadnock
Collaborative)
Caregiver
Specialist
Management: ServiceLink Resource Center Managers, Evaluators (IOD),
NH Bureau of Elderly and Adult Services (State Funder), Project Staff &
Consultants
Community
Organizer
Caregiver
Specialist
Caregiver
Specialist
Community
Organizer
Family
Caregivers
Implementation
Community
Networks
Grafton Co. SLRC
(Grafton Co. Senior
Citizens Council, Inc.)
Sullivan Co. SLRC
(Monadnock
Collaborative)
Community
Networks
Project
Coordinator
Coos Co. SLRC
(Tri-County CAP)
Caregiver
Specialist
Community
Networks
Community
Networks
“Uniting Communities to Support Family Caregivers”
Community
Organizing
Direct
Service
• Caregiver assessment, support
• Powerful Tools for Caregivers
• Flex Funds
• Network development
• Volunteer training
• Community-based supports
Evaluation
A Most Difficult Privilege
www.nhcaregiverconnections.org
(Visit our website to see our 14-minute video)
Networking providers
Training and Respite in Remote Regions
High School and University student involvement
Steering Committee made up of current and
former caregivers and providers
Area Agency on Aging
Adult Day Programs
Health/Palliative Care Providers
University departments
Community-based non-profits
Volunteer Service Organizations
Community Action Program
Caregivers/community members
Legislators
Municipal and State entities
High Schools
Mini Grants
New partners
New caregiver populations
New service benefits
All Inclusive Resource Exchanges
Caregiver Trainings
Basic Skills
Dementia Specific (SAVVY)
Choice and opportunities through scholarship
funds
Incorporating the Senior Companion Program
Reaching into high schools, universities and
colleges
Affordable case management
Increasing number of and access to caregiver
training programs
Affordable and sustainable adult day services
Online health assessments for caregivers
Resource center development
Health center based discharge planning
Media Outreach
Webcasts
Navigator Website
Video Phones
Internet Access
Online Caregiver Self Assessment
Online Caregiver Curriculum
Needs and resources assessment work by
Center on Aging to inform service delivery
Input from a diverse group of community
members, caregivers, and professionals
Asset mapping based on findings
148 surveys returned and 46 focus group
participants
64 towns represented
Survey respondents:
41% retired
6% are disabled
53% currently working:
▪
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Home health staff
Social workers
Business/sales
Clergy
Focus Group participants:
75% female; 25% male
1% grade school; 25% high school/GED; 50% college; 24%
graduate degree
Employment background:
Boat Captain
Executive Director
Homemaker
Chef
Physician
Psychotherapist
School Librarian
Teacher
Farmer
Truck Driver
Defining Caregiving
It’s paid/unpaid
Complex relationships
It’s a 24/7 job
You wear multiple hats/fill multiple roles
Financial burden/fear of losing life savings
Grieving all the time
Play multiple roles-be yourself, doctor,
lawyer, caregiver, executive assistant,
housekeeper, etc.
You are a “draftee” into service-thrust into
role suddenly
Transportation
Large distances to services
Door-to-door transportation needed
Transferring into a car challenging
Transportation programs rely on
volunteers
Lack of formal resources
Resources located far away
Insufficient funding to develop
programs/services
Caregivers don’t often know they are
caregivers
Need to educate community about this issue in
general
It’s all “on-the-job training”
Need training and support to help family
caregivers with techniques for hands-on care
Education on specific medical disorders
Resiliency and strengths of
caregivers
Crafting personal solutions
Developing personal stress relief
techniques
Community
Neighbors helping neighbors
Formal and informal resources
available
Aging network-AAA, Legal Services for the
Elderly, etc.
Alzheimer’s Association
Adult day programs
CAP agency
Key professionals
Healthcare sites
Homecare agencies
Hospice agencies
Churches
NeighborCare/Neighbors
helping one another
Faith in Action
Community support groups
Individual community
members
Local schools (students)
Community Organizing
Community
Education
Training
Caregivers
Supports
Networks
Community
Education
Networks
Year 1
Years 2 & 3
Asset mapping /
focus groups
Reconvene /
establish
networks
Networks
Training
Supports
Evaluation
Training evaluation
BEFORE THIS PROGRAM
AFTER THIS PROGRAM
How knowledgeable are you about:
Not Very Knowledgeable
The Aging Process
Very
Knowledgeable
Not Very
Knowledgeable
Very
Knowledgeable
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The Responsibilities of Family Caregivers
The Impacts of Caregiving on Family
Caregivers
Ways Volunteers Can Support Family
Caregivers
Types of Community Resources That Can
Help
# of Events
Q1 2012
Q4 2011
Q3 2011
Q2 2011
Q1 2011
Q3 2010
0
5
10
15
20
25
30
# of Individuals Attended
Q1 2012
Q4 2011
Q3 2011
Q2 2011
Q1 2011
Q3 2010
0
50
100
150
200
250
300
Type of Event
Convened
Educated
One-on-one
27%
47%
26%
# Events Attended
46
45
One
Two
Three (to Eleven)
237
n=328
Dispersion of
328 attendees
across 4
counties
Critical Incident Timeline
250
200
150
Caregiver Support
Calls
Event Attendees
100
50
0
October
November
December
How to manage feelings of guilt
How to deal with changes in dynamics between
caregiver and care recipients
How to understand “goobledeegook” (insurance,
forms, planning etc.)
Showering/hygiene/hands-on care
Benefits/programs
Practical information about Alzheimer’s-not
medical or technical
When to consider a nursing home
93% of caregivers reported using skills
they learned at caregiver trainings one
month after attending.
Most common skills used after training
include:
Transfer techniques
Assisting loved one with walking/mobility
Communication skills
Understanding behaviors and how to respond
47
73% of caregivers reported using new
resources and services one month after
training. Including:
Hospice
Area Agency on Aging
Elder attorney
Support groups
Caregiver guides and other resource
materials
48
Created new services where gaps once
existed
Providers report increased collaboration
with other agencies and leveraging of
resources
Agencies are implementing policies and
practices that better support caregivers and
increase capacity for service provision
Source: Process evaluation findings Yrs. 1 & 2
49
Continual outreach is needed to ensure
caregivers and professionals are aware of
services available
Need for regular networking opportunities
for current and potential partners
Service gaps around flexible respite and
transportation
Source: Process evaluation findings Yrs. 1 & 2
50
Reaching more caregivers earlier in their journey
Fine tuning the scope of caregiver needs
Streamlining access to services with strong
partnerships
Improved provider communications
New diverse connections established
Strong advisory board
New funding source – fee for service
Improved the Family Caregiver Title III E Program
More useful tools for caregivers
Were able to leverage other grants
Finding common ground with partners
Finding caregivers to help advise a project
Collecting the right data from the start
Interpreting success from the data
Technology limitations in a rural state
Finding the right venue to offering trainings to
caregivers
Ongoing endowment fund for scholarships
Care navigator fee for service by adding medicaid
and insurance billing
Student rotations – use of social work students in
many other projects
Adult day services 7 days week and replication
activities region wide
Mini grant project data able to leverage other
revenue to continue and expand efforts
Island people want information but prefer to retain
their autonomy
High speed broadband necessary
Professionals don’t think people should pay
Caregivers have a hard time finding time
Small fixes can make a big difference
Medical vs social model adult day service
Community Organizing
Lessons Learned
•Individuality of locales
•Volunteers & finding our niche
• Network development is hard work
Questions & Discussion
Friday March 30, 2012, 8-9:30
Caring for Caregivers :Fostering Innovative Support Networks
Marriott Wardman Park, Washington Room 5
Friday March 30, 2012, 10-11:00
A Study of Caregiver Outcomes in the NH Family Caregiver
Support Program
Marriott Wardman Park, Balcony A