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: ▪ ▪ ▪ ▪ 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 □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ □ 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