The Invisible Health Care Provider: Informal Caregivers within Medical and Faith Communities
Julie Yonker, Dawn Frambes, Toluwani Adekunle, Erin Cawley, Joseph DeVries and Elianah Reynolds, Calvin University, Grand Rapids, MI
Informal caregivers—unpaid individuals who provide medical or physical care for family members or friends—play a critical but underrecognized role in the U.S. health care system. In 2024 alone, an estimated 53 million adults served in this capacity (National Report to Congress, 2024). These caregivers frequently handle complex physical and medical needs without compensation, training, or structured support from medical institutions, resulting in a lack of visibility and minimal acknowledgment of their contributions. Research has only begun to address the diverse challenges informal caregivers face and how professional caregivers could better engage and support them.
One Congressional effort, the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, was enacted in 2018 to assess caregiver needs and identify resources. One hope is that the faith communities could have stepped in to help fill some gaps to assist informal caregivers, however, we have found limited resources available.
Unpaid caregiving has a significant economic impact, saving the health care system approximately $600 billion each year (National Report to Congress, 2024). However, the cost of caregiving on these individuals is profound. Informal caregivers often experience a wide array of physical, psychological, social, and spiritual burdens. According to the Christopher and Dana Reeve Foundation, 41% of informal caregivers suffer from chronic back problems, 51% from sleeplessness, 63% report poor eating habits, and 75% do not seek adequate medical care for themselves. Psychologically, 70% report depression or anxiety—considerably higher than the general population.
Caregivers often feel socially isolated and disconnected from a “normal” life, finding it difficult to maintain personal relationships and spiritual well-being. While caregiving can reflect a deep commitment and compassion, it is usually accompanied by significant personal sacrifice and limited emotional or social support. Given that humans are created by God as social beings, designed to thrive in community, isolation related to caregiver demands can profoundly affect caregivers' overall sense of well-being.
Our multi-year project, Support for the Informal Caregiver: The Role of Professional Caregivers and Faith Communities, examines the support structures available to informal caregivers within both medical and faith-based organizations. During the first year, we gathered quantitative and qualitative data highlighting several key areas where support is either limited or nonexistent. Preliminary quantitative findings indicate that about 50% of acute care nurses refer informal caregivers to spiritual resources, suggesting some acknowledgment of caregivers' needs. However, our qualitative data from various faith communities paints a more limited picture: resources and direct support for informal caregivers within these communities remain scarce. Many caregivers feel isolated, with little opportunity for respite or community-based support tailored to their needs.
The implications of these findings are significant. For informal caregivers, access to both medical and spiritual support is essential not only to ease the burden of caregiving but to sustain their ability to provide effective care over the long term. Professional caregivers could play a pivotal role by actively referring caregivers to community or faith-based resources, offering training in caregiving skills, and encouraging a culture that values informal caregiving. Faith communities, traditionally strong sources of community support, could also contribute meaningfully by providing spiritual guidance, community connection, and organized respite care, filling critical gaps not met by medical institutions.
In summary, our research highlights the pressing need to make informal caregivers visible within both medical and faith communities. By understanding and addressing the support gaps these caregivers face, we can foster a more inclusive approach to health care—one that acknowledges and supports the millions of hidden providers who sustain the well-being of many in need.
One Congressional effort, the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, was enacted in 2018 to assess caregiver needs and identify resources. One hope is that the faith communities could have stepped in to help fill some gaps to assist informal caregivers, however, we have found limited resources available.
Unpaid caregiving has a significant economic impact, saving the health care system approximately $600 billion each year (National Report to Congress, 2024). However, the cost of caregiving on these individuals is profound. Informal caregivers often experience a wide array of physical, psychological, social, and spiritual burdens. According to the Christopher and Dana Reeve Foundation, 41% of informal caregivers suffer from chronic back problems, 51% from sleeplessness, 63% report poor eating habits, and 75% do not seek adequate medical care for themselves. Psychologically, 70% report depression or anxiety—considerably higher than the general population.
Caregivers often feel socially isolated and disconnected from a “normal” life, finding it difficult to maintain personal relationships and spiritual well-being. While caregiving can reflect a deep commitment and compassion, it is usually accompanied by significant personal sacrifice and limited emotional or social support. Given that humans are created by God as social beings, designed to thrive in community, isolation related to caregiver demands can profoundly affect caregivers' overall sense of well-being.
Our multi-year project, Support for the Informal Caregiver: The Role of Professional Caregivers and Faith Communities, examines the support structures available to informal caregivers within both medical and faith-based organizations. During the first year, we gathered quantitative and qualitative data highlighting several key areas where support is either limited or nonexistent. Preliminary quantitative findings indicate that about 50% of acute care nurses refer informal caregivers to spiritual resources, suggesting some acknowledgment of caregivers' needs. However, our qualitative data from various faith communities paints a more limited picture: resources and direct support for informal caregivers within these communities remain scarce. Many caregivers feel isolated, with little opportunity for respite or community-based support tailored to their needs.
The implications of these findings are significant. For informal caregivers, access to both medical and spiritual support is essential not only to ease the burden of caregiving but to sustain their ability to provide effective care over the long term. Professional caregivers could play a pivotal role by actively referring caregivers to community or faith-based resources, offering training in caregiving skills, and encouraging a culture that values informal caregiving. Faith communities, traditionally strong sources of community support, could also contribute meaningfully by providing spiritual guidance, community connection, and organized respite care, filling critical gaps not met by medical institutions.
In summary, our research highlights the pressing need to make informal caregivers visible within both medical and faith communities. By understanding and addressing the support gaps these caregivers face, we can foster a more inclusive approach to health care—one that acknowledges and supports the millions of hidden providers who sustain the well-being of many in need.