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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. Meeting the Challenges of the Rural Caregiver Through Collaboration and Innovation.

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meeting the challenges of the rural caregiver through collaboration and innovation

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

Meeting the Challenges of the Rural Caregiver Through Collaboration and Innovation


Coös County  Grafton CountySullivan County  Monadnock RegionCaregiver Connections1.866.634.9412“Uniting Communities to Support Family Caregivers”

Sarah Harpster

  • Monadnock ServiceLink Aging and Disability Resource Center

Kimberly Phillips

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 .
the service area
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
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 challenging1
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
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”


Caregiver Connections: Partnerships at Every Level

Project Schematic

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


Project Coordinator

Monadnock SLRC

(Monadnock Collaborative)

Grafton Co. SLRC (Grafton Co. Senior Citizens Council, Inc.)

Coos Co. SLRC

(Tri-County CAP)

Sullivan Co. SLRC

(Monadnock Collaborative)

Caregiver Specialist

Caregiver Specialist

Community Organizer

Community Organizer

Caregiver Specialist

Caregiver Specialist

Family Caregivers


Community Networks

Community Networks

Community Networks

Community Networks


“Uniting Communities to Support Family Caregivers”

Direct Service

  • Community
  • Organizing
  • Caregiver assessment, support
  • Powerful Tools for Caregivers
  • Flex Funds
  • Network development
  • Volunteer training
  • Community-based supports


a most difficult privilege
A Most Difficult Privilege
  • (Visit our website to see our 14-minute video)
tackling the rural challenge by collaborating
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
  • 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
unique supports
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
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
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
  • Media Outreach
  • Webcasts
  • Navigator Website
  • Video Phones
  • Internet Access
  • Online Caregiver Self Assessment
  • Online Caregiver Curriculum
maine identifying needs and resources
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
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
  • Focus Group participants:
    • 75% female; 25% male
    • 1% grade school; 25% high school/GED; 50% college; 24% graduate degree
    • Employment background:
  • Psychotherapist
  • School Librarian
  • Teacher
  • Farmer
  • Truck Driver
  • Boat Captain
  • Executive Director
  • Homemaker
  • Chef
  • Physician
maine identified needs and impact
Maine-Identified Needs and Impact

Defining Caregiving

  • It’spaid/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
strengths facilitating factors
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
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
Informal Resources
  • Churches
  • NeighborCare/Neighbors helping one another
  • Faith in Action
  • Community support groups
  • Individual community members
  • Local schools (students)


Year 1

Asset mapping / focus groups

Years 2 & 3

Reconvene / establish networks

maine impacts caregiver training
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
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
training results use of resources
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
impacts provider perspectives
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

areas for improvement challenges provider perspectives
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

successes maine
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 maine1
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
  • 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
lessons learned
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
Community Organizing Lessons Learned
  • Individuality of locales
  • Volunteers & finding our niche
  • Network development is hard work
questions discussion
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