November is National Family Caregivers Month (NFCM). In recognition of the unprecedented challenges caregivers are facing due to COVID-19, this year’s national theme for NFCM is Caregiving in Crisis. This theme focuses on addressing the new realities and obstacles that family caregivers face with their loved ones during the pandemic, such as struggling to access facility-based or in-home support services, or financial stress and unemployment resulting from the current economic crisis.
Several Health Foundation grantees are working to address some of these issues through innovative new programs that will support family caregivers during this crisis and beyond. As we honor the family caregivers in our community this month, here is a look at a few of these programs:
Project SECURE (Supporting the Experience of Caregivers to Upstate Region’s Elders) is a coalition that is led by a group of Health Leadership Fellows in conjunction with the Syracuse Jewish Family Service and Erie County Department of Senior Services to improve support for family and friends providing care for older adults in the western and central New York regions.
Comprised of a dozen community-based organizations and partners, Project SECURE aims to address caregiver burden and reduce caregiver burnout by enhancing the role of in-home providers such as home care aides so they can attend to a hierarchy of caregiver needs that include, but go well beyond, respite care.
In this model, the family would have a dedicated enhanced in-home provider to turn to for support, guidance, and facilitated access to resources. The trusted relationship that develops can help ease the stress of everyday responsibilities for the family caregiver and open the door to more meaningful interactions with their loved one and, ultimately, a more fulfilling caregiving experience. The project also aims to ensure enhanced in-home providers receive a fair wage and have career ladder opportunities in an industry where more than half the workforce are people of color.
Judith Huober, Director of Syracuse Jewish Family Service, equates the enhanced role to a “caregiver doula” who is empowered by additional training and the support of a care manager in the background to be a “first observer” and “first responder” to a range of needs in a holistic, single-point-of-contact way.
“When we started this project, we wanted to find out what caregivers need so they can remain healthy and supported as they grow into new but hopefully rewarding stages of their relationship with their loved one,” said Huober. “This model also helps ensure the provider can find greater purpose and job fulfillment. In the long run, we hope this will help address the workforce issues we see in home care.”
Huober continued, “One thing we heard when we talked to family caregivers is they feel very alone. They have become cut off from what they used to regard as their life. They are forced to make many critical decisions on their own, and abandon the activities, routines, relationships and everyday moments that used to define their sense of identity. They are often so overwhelmed that their only focus is getting through this unremitting experience of loss and burden. They want to maintain loving connection with their loved one, for whose sake they took on this role in the first place. They want their lives back.”
The enhanced in-home provider will be trained to observe and report back to the care manager on a variety of these issues, functioning as the family’s conduit to a team of agencies, professionals and other resources. Project SECURE’s ultimate goal is to help the caregiver recognize, tolerate, cope with and transform caregiving challenges into a positive, life-affirming chapter in their relationship with their loved one, that, in the end, they are grateful to have experienced.
Communities Care Family Respite Pilot Projects
The Communities Care Family Caregivers Respite Pilot Program funds innovative, collaborative projects that aim to increase respite opportunities for family caregivers of older adults in rural Western New York and beyond. Respite, a period of rest or relief, can play a key role in reinforcing caregiver well-being and effectiveness, and improved caregiver well-being can be linked to better health, social-emotional outcomes and lower costs of care for family caregivers and for older adults they care for.
Communities Care is funded by the Ralph C. Wilson Jr. Foundation (RCWJRF) and the Health Foundation, and managed by The Philanthropic Initiative (TPI) with support from Teresa Lawrence of International Deliverables.
In August 2020, the following Respite Pilot projects were selected for funding over three years:
- WNY E-Respite: Finding Relief Through Technology – Cattaraugus County-based Healthy Community Alliance is leading a caregiver respite pilot that focuses on how digital technology can be used to help caregivers remotely achieve respite, learn self-care techniques, and solve new problems in caregiving.
Their geographic scope will include Cattaraugus and Wyoming counties at a minimum and will explore broader WNY and statewide partnerships for potential expansion. Partners in the project include Cattaraugus and Wyoming County Area Agencies on Aging, Directions in Independent Living, Total Senior Care PACE, Homecare and Hospice, Interfaith Caregivers Inc., and the Western New York Integrated Care Collaborative.
“A recent AARP study shows one in four older adults in rural communities are caregiving and 24 percent of caregivers are caring for more than one person,” said Ann Battaglia, Executive Director, Healthy Community Alliance. “Access, transportation, health care shortages, availability of place based services, and internet access are just some of the challenges faced by rural communities, and the COVID-19 pandemic has forced us to trying to meet these needs in entirely new ways. As this public health crisis impacts how we care for others and as digital technology offers more practical solutions for caregivers looking for relief and support, respite can now begin to take on new forms.”
“Technology might also help a caregiver with their own self-care – for example, using telehealth to take care of medical appointments,” continued Battaglia. “Many caregivers report losing a sense of their own identity. Technology could help connect them to online support groups, clubs, or video chats with friends.”
- Intergenerational Enrichment and Educational Respite Program – Allegany County-based Ardent Solutions, Inc. is leading a project that focuses on intergenerational engagement and the full range of ways in which young people and older adults interact, support, and provide care for one another. Ardent will partner with Genesee Valley Central School District and the Allegany County Office for the Aging to develop an Intergenerational Enrichment and Educational Respite Program where caregivers, older adults, and youth collectively access Genesee Valley Central School District assets and interact through social and educational forums.
- Memory Café Design and Expansion – Southern Erie County-based West Falls Center for the Arts will expand their unique approach to an internationally recognized joint enrichment model, the Memory Café, to provide music, socialization, support and education to caregivers and their loved ones. The project aims to expand their existing model for older adults living with Alzheimer’s Disease or dementia and their caregivers, while also developing a new model designed for isolated older adults, that will also pair them up with volunteer caregivers in the community. The project organizers are looking to expand into other counties in western New York and will build critical partnerships with art- and performance-based partners such as theatres, museums, and aging services organizations such as Area Agencies on Aging, while also designing a replicable model for potential statewide expansion.
Faith Leaders Initiative
Faith leaders and clergy play a complex and important role in their communities, offering comfort, guidance and leadership to congregants, and connecting people to valuable health-related resources and information. The Health Foundation’s work with the faith leader community includes supporting an initiative led by the Ralph C. Wilson, Jr. Foundation and the Coalition to Transform Advanced Care that gives faith leaders the opportunity to collaborate on new ways of supporting and reaching family caregivers.
Want to learn more about family caregiving?
For a first-hand look at the experience of family caregivers in our community, we recommend Tight Knit, a podcast and documentary series from our partners at the Ralph C. Wilson, Jr. Foundation. The series shines a light on the real-life experiences of caregivers in southeastern Michigan and western New York. To learn more about the series and to access this compelling content, please visit www.tightknit.org.
The Health Foundation is proud to support programming and resources for those taking on the role of caregiver to loved ones. Learn more about National Family Caregivers Month here.