How Federations Support America’s Family Caregivers

Our communities depend on family caregivers. We rely on their hard work, their empathy, the emotional burdens they bear, and their strength to go about our daily lives.

Millions of us take on that role, sometimes briefly, sometimes more permanently, often unexpectedly. The phone rings or the text beeps, maybe for the first time, maybe for the hundredth time.

Mom fell. Dad left the stove on again. The tumor is cancerous. She’s got COVID. “I can’t leave; can you take him to his appointment?”

Millions of family caregivers take care of loved ones while trying to keep their jobs, their families, and their sanity. It isn’t easy. From assisting with shopping to coordinating care providers, from administering medications to helping loved ones use the bathroom, caregivers do it all. Even when it’s rewarding, it’s hard work, and over time can be a physically, emotionally, socially, and financially draining and isolating experience.

This is why Jewish Federations supported the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, which called for the development of a national family caregiving strategy. Jewish Federations pushed to include a recognition of trauma and the person-centered, trauma-informed approach as a way to better assist family caregivers. The United States Administration for Community Living (ACL) is developing an implementation strategy to be published later this year, and with our support, trauma will be one of the cross-cutting themes in the National Family Caregiving Strategy.

The theme of trauma is central to the work of the Jewish Federations’ Institute on Aging and Trauma, as we have long known about the impact of trauma among Holocaust survivors. But we know that Holocaust survivors are not alone, and that trauma is everywhere these days. It affects Holocaust survivors to be sure, but also veterans and first responders; victims of crime, domestic violence, and disasters; members of racial, ethnic, and sexual minority communities, and yes, family caregivers too. 

While there is no single agreed upon definition of trauma, there is some agreement that the hallmarks of a traumatic experiences include the loss of a sense of safety, power, and control. These are the same hallmarks family caregivers can experience when confronted with illness, loss of function, and/or declining physical, mental, emotional, and/or cognitive health in their loved ones. That sudden phone call or text, that slow decline in a loved one, those symptoms that seem to be getting worse and the medical explanations that seem impossible to understand, can plunge a family caregiver into an unknown and confusing world where their ability to control their lives can disappear in a matter of moments.

So what can we do to minimize the trauma of family caregiving? Based on our experience with Holocaust survivors and our person-centered, trauma-informed approach, which calls for the incorporation of trauma-informed principles such as safety, empowerment, and cultural sensitivity into all aspects of service provision, we have created a series of strategies that service providers can use to help family caregivers maintain a sense of safety, power, and control while engaged in caregiving. The full list of strategies can be found here.

Each year on the 3rd Friday in February, National Caregivers Day is observed. This day is set aside to recognize the many caregivers who provide care and support to their loved ones. This is a great time to reflect on how as a community we can embrace the caregivers amongst us and provide them with the support they require. Together with the other recommendations developed by ACL, we believe that these trauma-informed measures will help ease the anxieties and burdens of family caregivers and provide them with the support they deserve.