Noëlle Merrill, Eastern Area Agency on Aging Deborah Poulton, Eastern Area Agency on Aging Lenard Kaye, University of Maine Center on Aging Jennifer Crittenden,

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