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Lessons Learned from CTLB Community/Partnership Organizations Volunteers Caregivers

Community/Partnership Lessons Grassroots effort creates a sense of ownership, commitment to sustainability Success defined in a new way: creation of a stable network to support informal service providers Decentralized structure made it difficult to implement Legacy Corps, secure match funding

Organizational Level Lessons Organizational history, culture, structure, capacity, etc., impact program size, shape, potential for success Education needed so all understand caregiving and value of the program Important to balance accountability with flexibility to keep organizations engaged

Volunteer Lessons Volunteer succession difficult, despite requiring two leaders Health, family, economic difficulties pose challenges but highlight passion and perseverance Stipends a necessity in low-income area Creativity needed to engage volunteers in extensive outreach and evaluation

Caregiver Lessons Even volunteers from the same church needed to be creative and persistent for caregivers to accept their help Caregivers in this area traditionally ask for “practical” help—respite, transportation, meals, etc. But CTLB caregivers now describe education and support groups as most valuable

Over the past 37 years, AgeOptions has established a national reputation for meeting the needs, wants and expectations of older adults in suburban Cook County. We are recognized as a leader in developing and helping to deliver innovative community- based resources and options to the evolving, diverse communities we serve Lake Street, Suite 300 phone (800) Fax (708) Oak Park, Illinois (708) TTY (708) ageoptions.org A caregiver and her dad Legacy Corps volunteers

PRESENTATION TO THE HARRY & JEANETTE WEINBERG FOUNDATION AMERICAN SOCIETY ON AGING CONFERENCE WASHINGTON, D.C. MARCH 28, 2012 CaregiverCentral.org A program of Share the Care, Inc. Orlando, FL Presenters: Susan Dorries, Project Director Annette Kelly, PhD, Research Director Funded by the Harry & Jeannette Weinberg Foundation 10260

In the Beginning… We wanted to know if we could contribute to the lives of caregivers through an online caregiver assessment tool. Will family caregivers even use an online self-assessment? Who are the caregivers in our community who are not currently accessing services? Will an online self-assessment reach a diverse group of caregivers? Will the menu of services generated by the online self- assessment have value to the community? To service providers?

Our Fundamental Question: Will Family Caregivers use an Online Tool? THE ANSWER? YES! Family Caregivers will use an online assessment tool. More than 7,500 visits to CaregiverCentral.org to date 506 caregivers completed online caregiver assessments

Who are the Caregivers using CaregiverCentral.org? Of the 503 caregivers who completed the online assessment… Average caregiver age = % female Caregiver age ranged between 18 to 88 years 67% White, 14.7% Black, 13.2% Hispanic 47% are daughters, 19% are spouses 64.9% of caregivers are married 35.9% earn under $30K, 31.5% ($30K-60K), and 32% ($60K+) 70.4% of caregivers provide daily care, and 69.8% of caregivers use no paid help * Majority experience high to very high levels of Burden, Risk and Depression.

Have Caregivers Already Accessed Services? CaregiverCentral.org reaches caregivers that are outside of the traditional community service network… 77 % were unfamiliar with existing resources 81 % were not currently receiving any help These statistics support the hypothesis that caregivers are self-identifying themselves as caregivers earlier in the continuum as a result of accessing CaregiverCentral.org.

Caregiver Quality of Life Direct Resource Assistance for Caregivers In post intervention follow-up, caregivers demonstrated improved overall quality of life as indicated by statistically significant reduction of:  Caregiver stress  Caregiver risk  Caregiver burden CaregiverCentral.org provided direct community resource information to individual caregivers on their self- identified: Top care needs:  Respite Care  Home Care Top task needs:  Shopping and Meal Provision  Transportation Most frequent care concerns:  Memory loss  Falling or almost falling  Feeling down or blue Contribution to Caregivers & Community?

Central Florida Switzerland Contributions, cont’d

Future Replication & Sustainability:  Currently working with another national foundation to build upon the work the Weinberg Foundation had made possible;  Currently developing a beta site in Sarasota, FL A Local Model with Potential for Broad Impact: In the past 45 days alone, CaregiverCentral.org has been visited by users from:  48 Cities in Florida  24 States across the Nation, and;  3 countries outside the U.S. CaregiverCentral.org: A Replicable Model for Serving Family Caregivers

Thank you!

Caregiver Initiative Gathering 2012 Wednesday, March 28, 2012 LeadingAge, Washington, DC