Family Caregiver Support
Having a family caregiver is among the biggest determinants of the quality of care that a person with advanced illness receives, but caregiving can present a variety of challenges. Overall, the draining nature of the work is a top issue for family caregivers who often feel their work lacks meaning. 69% of caregivers reported a net negative experience with caregiving. They also struggled with a lack of knowledge about the disease they’re caring for, what to expect in the process, and how to cope with the demands of caregiving. Finally, their financial burdens are significant. We are creating a whole generation of caregivers who sacrifice their jobs and personal relationships, lack financial security, and are left with little after their loved ones pass away. While these challenges are not necessarily new, this research adds vividness and personal dimensions to the problem.
With support from the Cigna Foundation, C-TAC has worked with Rabbi Richard Address, Founder of Jewish Sacred Aging, to develop an online toolkit designed to aid Jewish faith leaders in supporting caregivers in their congregation. To access the full toolkit, please click here. C-TAC has also collaborated with AARP to distribute the AARP Prepare to Care Guide. This manual provides includes information on how to have vital conversations with older family members, organize important documents, assess your loved one's needs and locate important resources.
Download the AARP Prepare to Care Guide
The AARP Prepare to Care guide has been translated into multiple languages and tailored to fit a variety of communities. All versions of the guide are available for download below:
To address these challenges, Tim Bauerschmidt and Ramie Liddle, authors of Driving Miss Norma: An Inspirational Story About What Really Matters at the End of Life, have joined C-TAC as our inaugural Caregiver Fellows. This fellowship is designed to raise awareness of the challenges that caregivers face and provide solutions.
As C-TAC fellows, Tim and Ramie will continue to advocate for family caregivers by raising awareness of their issues, creating a positive image of caregiving, and connecting resources to households that need it.
To better understand the struggles faced by family caregivers, C-TAC undertook a digital ethnography of over 6,700 conversations from websites where family caregivers discuss caring for a loved one. The analysis provided a vivid depiction of the state of family caregivers in the United States and the need to do more to support these individuals and their families. This project was supported by funding from the Cigna Foundation.
State of Mind
• Mental fatigue, loneliness, and anger arise from caregivers’ resentment at lack of support
• Feel sad, anxious, and helpless when they see loved ones suffer
• Grief (29%), mental fatigue (29%), and anxiety (20%) are the primary emotions that impact caregivers’ state of mind
• Very difficult to balance other relationships
• Inability to leave patient isolates them from the rest of the world
• 41% express resentment towards family members due to lack of support
• 97% of caregivers report a decline in health
• Caregiving is a high stress task that takes a toll on both emotional and physical health of the caregiver
• High emotional spending leads to depression (24%) and insomnia (19%)
• Aggravated conditions result in higher medical bills
• 48% of caregivers are unable to to work
• 94% of caregivers report a deterioration of their financial health