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Meeting the Challenges of the Rural Caregiver Through Collaboration and Innovation
Noëlle Merrill, Eastern Area Agency on AgingDeborah Poulton, Eastern Area Agency on AgingLenard Kaye, University of Maine Center on AgingJennifer Crittenden, University of Maine Center on Aging
Coös County Grafton CountySullivan County Monadnock Region
Caregiver Connections1.866.634.9412
“Uniting Communities to Support Family Caregivers”
Sarah HarpsterMonadnock ServiceLink Aging and Disability Resource Center
Kimberly PhillipsUNH Center on Aging and Community Living
Background
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 .
Site Visit
Serving Vacationland
The Service Area
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
Providing Caregiver Services in Maine is Challenging
Oldest state based on median age
Restrictive Nursing Home Eligibility
Rural and economically disadvantaged regions as compared to other counties in Maine
Providing Caregiver Services in Maine is Challenging Lack of healthcare access
High chronic disease burden
Rapidly aging population
Limited or no public transit
“You can’t get there from here”
Realities of Caregiving
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”
Oversight: Steering Committee (leaders from each County); Monadnock Collaborative (fiscal agent); state level experts
Management: ServiceLink Resource Center Managers, Evaluators (IOD), NH Bureau of Elderly and Adult Services (State Funder), Project Staff & Consultants
Monadnock SLRC
(Monadnock Collaborative)
Coos Co. SLRC
(Tri-County CAP)
Grafton Co. SLRC (Grafton Co. Senior
Citizens Council, Inc.)
Sullivan Co. SLRC(Monadnock
Collaborative)
Community Organizer
Community Organizer
Leadership
Implementation
Caregiver Connections: Partnerships at Every LevelProject Schematic
Caregiver Connections: Partnerships at Every LevelProject Schematic
Family Caregivers
Community Networks
Community Networks
Community Networks
Project Coordinator
Caregiver Specialist
Caregiver SpecialistCaregiver
Specialist
Community Networks
Caregiver Specialist
Direct Service
Community
Organizing
Evaluation
• Network development• Volunteer training• Community-based supports
• Caregiver assessment, support• Powerful Tools for Caregivers• Flex Funds
“Uniting Communities to Support Family Caregivers”
A Most Difficult Privilege
www.nhcaregiverconnections.org(Visit our website to see our 14-minute video)
Tackling the Rural Challengeby Collaborating
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
The Steering Committee
Partners
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
Partners
Unique Supports
Mini Grants New partners New caregiver populations New service benefits
All Inclusive Resource Exchanges
Caregiver Trainings Basic Skills Dementia Specific (SAVVY)
Creating the most needed and sustainable services:
Choice and opportunities through scholarship funds
Incorporating the Senior Companion Program
Reaching into high schools, universities and colleges
Affordable case management
Creating Supports
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
Technology
Media Outreach Webcasts Navigator Website Video Phones Internet Access Online Caregiver Self Assessment Online Caregiver Curriculum
Maine-Identifying Needs and Resources
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
Survey Participants
148 surveys returned and 46 focus group participants
64 towns represented Survey respondents:
41% retired 6% are disabled 53% currently working:
▪ Home health staff▪ Social workers▪ Business/sales ▪ Clergy
Focus Group Participants
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
Maine-Identified Needs and Impact
Findings
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
Findings
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
Strengths & Facilitating Factors
Resiliency and strengths of caregivers Crafting personal solutions Developing personal stress relief
techniques
Community Neighbors helping neighbors
Formal and informal resources available
Formal resources
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
Informal Resources
Churches NeighborCare/Neighbors
helping one another Faith in Action Community support
groups Individual community
members Local schools (students)
Asset Maps
Caregivers
Community Organizing
Community Education
Networks
Year 1
Asset mapping / focus groups
Years 2 & 3
Reconvene / establish networks
Networks
Training
Supports
Evaluation
Training evaluation
How knowledgeable are you about:BEFORE THIS PROGRAM AFTER THIS PROGRAM
Not Very Knowledgeable VeryKnowledgeable
Not VeryKnowledgeable
VeryKnowledgeable
The Aging Process□ □ □ □ □ □ □ □ □ □
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
□ □ □ □ □ □ □ □ □ □
Q3 2010
Q1 2011
Q2 2011
Q3 2011
Q4 2011
Q1 2012
0 5 10 15 20 25 30
# of Events
Q3 2010
Q1 2011
Q2 2011
Q3 2011
Q4 2011
Q1 2012
0 50 100 150 200 250 300
# of Individuals Attended
47%
26%
27%
Type of EventConvenedEducatedOne-on-one
237
45
46
# Events Attended
OneTwoThree (to Eleven)
n=328
Dispersion of 328 attendees
across 4 counties
Critical Incident Timeline
October November December0
50
100
150
200
250
Caregiver Support CallsEvent Attendees
Maine-Impacts: Caregiver Training
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
Training Results: Skills Building
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
Training Results: Use of Resources
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
Impacts: Provider Perspectives
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
Areas for Improvement/Challenges: Provider Perspectives
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
Successes - Maine
Reaching more caregivers earlier in their journey
Fine tuning the scope of caregiver needs
Streamlining access to services with strong partnerships
Improved provider communications
Successes - Maine
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
Challenges
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
Sustainability
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
Adult Day and Resource Center
Lessons Learned
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, 10-11:00A Study of Caregiver Outcomes in the NH Family Caregiver Support ProgramMarriott Wardman Park, Balcony A
Friday March 30, 2012, 8-9:30Caring for Caregivers :Fostering Innovative Support NetworksMarriott Wardman Park, Washington Room 5