Caregiver Initiative Gathering 2012

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

2. 9906 Bridge to Healthy Families Asian Pacific Islander Dementia Care Network Sacramento, CA

3. A collaborative project of Asian Community Center UC Davis Alzheimer’s Disease Center

4. Churches Relatives UC Davis Alzheimer’s Disease Center Physician Education Consultation Dementia Care Network Asian Community Center Cognitive Assessments Respite Information & Assistance Lifelong Learning & Wellness ACC Rides Civic Organizations Community Events Educational Workshops Caregivers Physicians Service Projects Community Groups Alzheimer’s Assn Support Groups Hotline Medic Alert & Safe Return Respite Scholarships Care Advocate Nutrition Sites Service Providers

5. Bridge to Healthy Families Bridging communication • Care receiver • Caregivers • Primary Care Physician Dementia and caregiving become a familiar language • Assessment • Diagnosis • Treatment • Care Management

6. Bridge to Healthy Families Community Education • Civic & Service groups • Religious groups • Professional groups • Workshops for the general public • Physician Education

7. Lessons Learned:Increasingly Diverse “Families” More than a ‘primary’ caregiver • Multiple family caregivers • Family caregivers caring for more than one care receiver • Recognizing ‘blended’ families and varied roles • Fictive-kin relationships • Multicultural & Multilingual generations

8. Lessons Learned: Making the collaboration work 8

9. Willing Hearts, Helpful Hands Parker Jewish Institute for Health Care & Rehabilitation 271-11 76th Avenue New Hyde Park, New York 11040 9922 www.parkerinstitute.org

10. Challenges and Lessons Learned

11. Lessons Learned: Families • Respite services need to be individualized and sensitive to the unique needs of the family. • Family caregivers slow to accept in-home care from strangers. • Some families are uncomfortable with notion of leaving volunteer alone in home with care recipient. This presents a challenge to fully engaging the families in the respite care process. • Paperwork can be a barrier to participation. • Disconnect between family expectations and goals of the program.

12. Lessons Learned: Families • The needs of caregivers for respite services vary widely. • While some caregivers need 24 hour care in the home, other caregivers will only need assistance on an episodic or emergent basis. • Services should target families' identified needs and appropriately address the types of special needs (e.g., in-home care, dementia, behavioral and other psycho-social problems). • Educate families about the nature of respite care, clarify their understanding of the service, and be responsive to their concerns. Include in-home assessment of families' respite care needs. • Raise awareness among families and the public about the need for respite care services for families who care for an older relative.

13. Lessons Learned: Families • More providers willing to provide free legal and financial advice are needed. • Transportation is a tremendous unmet need. • Help with home modifications, safety repairs and maintenance is needed. • Respite is an important bridge to introducing families to more comprehensive and needed supports.

14. Lessons Learned: Volunteers • Volunteers need to be reminded we are serving caregivers. • One of the major lessons learned from Legacy Corps grant is impact stipends have on have on mitigating retention and quality of volunteers. • In-services create an environment of continued learning and build teamwork. • We underestimated the amount of time it can take to recruit and manage volunteers. • Ongoing recruitment and training activities are essential in building and maintaining a strong volunteer pool. • Recruitment efforts are ongoing, need ongoing pre-service and in-service training, include natural helpers in training.

15. Lessons Learned: Management/Administration • The role of the Program Coordinator is essential to the success of the program. This position is essential in providing direction and keeping the process flowing. The coordinator has an overall understanding of the participants and can help identify problems and potential areas for collaboration and coordination. • Investment in a coordinator also helps to ensure that the voice of families and volunteers are brought into the conversation to help refine the program. • As the program grew and changed our staffing model needed to change.

16. Lessons Learned: Partnerships • It takes time to build relationships with community organizations. • Allow ample time for starting-up, establishing trusting relationships among agencies. • Do not expect that everyone is going to jump on board immediately. • Potential partners need to gain a level of trust that they are committing their resources to a worthwhile organization and project. This includes educating a staff on how the partnership is relevant to their program and its clients.

17. Lessons Learned: Partnerships • Some agencies are already busy with their own activities, and may not have time to “own” another activity or have the volunteers to spare for additional projects. • We underestimated the time it takes to connect and communicate with community agency staff. Many staff only work part time, are busy wearing multiple hats and have limited time to help with volunteer recruitment or referrals. • Surprised by the reluctance of some churches and other religious organizations to engage with us on the WHHH effort or the limited extent to which they were willing to get involved.

18. Lessons Learned: Partnerships • Most effective partnerships are built on existing relationships. • Lasting partnerships require an ongoing investment of significant effort and time. • Collaboration at all levels lead to better coordination of existing services. • Shared recruitment and training activities across and special need categories increase skill levels of volunteers. • Community awareness and education activities build support for the program among policy makers, state and local administrators and community members. • Base funding is critical to the program.

19. Programmatic Model Adaptation • Adaptive Model Based on Lessons Learned • Equal emphasis on therapeutic and concrete case management supports • Caregivers can access individual and/or support groups • Caring and Preparing pieces were folded together • Caregivers allowed more flexibility in accessing services and not committed to prescriptive number of sessions over period of time • Increased emphasis on educational components and resource development