Caregiver
Initiative
Gathering
2012
Wednesday, March 28, 2012
LeadingAge, Washington, DC
9906
Bridge to Healthy Families
Asian Pacific Islander
Dementia Care Network
Sacramento, CA
A collaborative project of
Asian Community Center
UC Davis Alzheimer’s
Disease Center
Dementia Care Network
Churches
Relatives
Community
Events
UC Davis
Asian Community Center
Alzheimer’s Disease
Cognitive Assessments
Center
Respite
Physician Education
Information & Assistance
Consultation
Lifelong Learning & Wellness
Educational Workshops
ACC Rides
Caregivers
Physicians
Service Projects
Community Groups
Alzheimer’s Assn
Support Groups
Hotline
Medic Alert & Safe Return
Respite Scholarships
Care Advocate
Service
Providers
Nutrition
Sites
Civic
Organizations
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
9922
Willing Hearts, Helpful Hands
Parker Jewish Institute
for Health Care & Rehabilitation
271-11 76th Avenue
New Hyde Park, New York 11040
www.parkerinstitute.org
Challenges and Lessons Learned
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.
11
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., inhome 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.
12
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.
13
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.
14
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.
15
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.
16
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.
17
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.
18

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
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Weinberg Gathering Part 1