Meeting the Challenges of the Rural Caregiver Through Collaboration and Innovation

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 Meeting the Challenges of the Rural Caregiver Through Collaboration and Innovation

2. 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

3. 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 .

4. Site Visit

5. Serving Vacationland

6. 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

7. 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

8. 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”

9. 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)

10. Caregiver Connections “Uniting Communities to Support Family Caregivers”

11. 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 Leadership 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 Implementation Community Networks Community Networks Community Networks Community Networks

12. “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 Evaluation

13. A Most Difficult Privilege • www.nhcaregiverconnections.org • (Visit our website to see our 14-minute video)

14. 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

15. The Steering Committee

16. 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

17. Partners

18. Unique Supports • Mini Grants • New partners • New caregiver populations • New service benefits • All Inclusive Resource Exchanges • Caregiver Trainings • Basic Skills • Dementia Specific (SAVVY)

19. 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

20. 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

21. Technology • Media Outreach • Webcasts • Navigator Website • Video Phones • Internet Access • Online Caregiver Self Assessment • Online Caregiver Curriculum

22. 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

23. 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

24. 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

25. 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

26. 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

27. 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

28. 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

29. 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

30. Informal Resources • Churches • NeighborCare/Neighbors helping one another • Faith in Action • Community support groups • Individual community members • Local schools (students)

31. Asset Maps

32. Community Organizing

33. Community Education

34. Networks Year 1 Asset mapping / focus groups Years 2 & 3 Reconvene / establish networks

35. Networks

36. Training

37. Supports

38. Evaluation

39. Training evaluation

44. Dispersion of 328 attendees across 4 counties

45. Critical Incident Timeline

46. 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

47. 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

48. 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

49. 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

50. 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