Family Caregiver Support
In June 2017, C-TAC released consumer data on family caregivers that paints a bleak picture of the state of caregiving in America. We will take this work to the next step by surveying the work already being done to support family caregivers and speaking with experts in the field. From this we will develop tools that will provide meaningful impact for loved ones caring for people with advanced illness. Our goal is for family caregivers to be assured of the importance of their work and know that resources are available to them.
Overall, the draining nature of the work is a top issue for family caregivers. They also feel they lack meaning in caring for loved ones. Their negative emotions are often interrelated – they feel stressed because they can’t leave their loved one or feel underequipped to provide certain types of care, then feel guilty for these reactions. Caregivers 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.
To address these issues, we are collaborating with thought leaders to construct an image for family caregivers that honors and emphasizes the importance of her work. Moreover, we are developing initiatives to support caregivers in their communities, their jobs, and their homes, as well as to connect families with local and online resources. Finally, we are mobilizing caregivers to advocate for a more person-centered healthcare system, and working to strengthen their voices in shared and informed treatment decisions.
- Caregiving has a very high negative impact on caregivers’ lives (69% net negative)
- The social lives and personal relationships of caregivers are hampered
- High emotional spending leads to depression (24%) and insomnia (19%)
- Excessive exertion and lack of rest leads to fatigue and aggravated medical conditions
- Compromised career (over 50%) and high medical expenses deteriorate financial health
- Patients expect both emotional and functional support from caregivers
- Online Support Groups (26% of caregivers seek support via online channels). Online resources serve as a primary source of motivation, empathy and advice for caregivers.