The Caregiving Agenda

By Sophie Evans

“Family caregivers are the backbone of our care system.” It’s an expression frequently used by policymakers inside and outside of Congress, perhaps because it evokes the very back-breaking work of caregiving. Coincidentally, Senator Bennet and AARP’s Nancy LeaMond both include the phrase alongside a set of statistics, which, once deciphered, reveal a largely unknown reality: the US is a nation of caregivers.

Forty-eight million Americans are caregivers according to the most recent caregiving report put forth by the AARP. The total grows to 53 million when you include those taking care of children with disabilities. That is approximately one fifth of the US population.

Caregiving is ever-present yet “unseen and unheard,” in the words of Senator Bennet, because those statistics do not best communicate the vast reality they reflect. Lost are the real, human stories that define caregiving. Numbers are impersonal – caregiving is not.

Yet, even though the pandemic has prompted many of the overdue conversations on caregiving, caregivers continue to function as a silent majority in mainstream politics. This is the case in large part because caregivers rarely self-identify as such. People do not define themselves as caregivers. Instead, they consider caregiving to be a fact of life – something done out of love and necessity for the people in their lives. As a result, there are no unions or associations of caregivers formed purely out of shared experience. The reality of caregiving remains unspoken and unseen. It is no surprise, then, that the caregiving agenda has not been our focus as a nation.

Fortunately, Senators Joni Ernst, Michael Bennet, Shelley Moore Capito, Elizabeth Warren, and Representative Linda Sánchez are working tirelessly on the Credit for Caring Act, which would provide some financial relief for caregivers across the country. The bill currently sits with the Senate Finance Committee and the House Committee on Ways and Means. It has been bipartisan and bicameral from the start, meaning that identical versions of the bill move through the House and Senate simultaneously in a bid to expedite the legislative process.

Senator Ernst and Representative Sánchez have actually introduced some form of the Credit for Caring Act every year since 2016, picking up additional support each year as more Members of Congress learn about what the bill would do.

Without further ado, the Credit for Caring Act:

  • What: “a $5,000* nonrefundable tax credit adjusted to inflation for family caregivers. The amount of the credit would be 30 percent of the qualified expenses paid or incurred by the family caregiver above $2,000, up to a maximum credit amount of $5,000.” *The bill currently proposes a $5,000 credit. There is a possibility that some version of this bill will be included in the upcoming reconciliation package. If that is to be the case, the size of the tax credit will likely decrease during the negotiation process.


  • Who: Under the bill, qualifying care recipients must have been certified by a health care practitioner to be in need of long-term care for at least 180 consecutive days. Eligibility is limited to a caregiver of a qualified care recipient who must pay for caregiving expenses and has earned income in excess of $7,500. Credit is phased out when income exceeds $150,000 for joint filers or $75,000 for individual filers.”


  • For additional details on the Credit for Caring Act and what it would mean for your loved ones, check out this toolkit put together by AARP.


Personal stories of caregiving brought this bill to life: Representative Sánchez credits the time she spent caring for her own parents with Alzheimers; Senator Ernst speaks of the outspoken caregivers in Iowa who shared their reality with her. Both Members describe how each of these experiences catalyzed the Credit for Caring Act in our most recent Velocity Index, “Caring for the Caregivers.”

Regardless of your own support for the bill, the Credit for Caring Act exemplifies the overlooked political power of caregivers. The personal stories that define caregiving have the potential to define legislation, if they can be properly communicated to Members of Congress. The impersonal statistics, poll numbers, and white papers that already compete for a Representative’s attention cannot do the job alone. Phrases like “the backbone of our care system” are no stand-in for actual people. For something as personal as caregiving, metaphors can only go so far.

If you would like to share your caregiving reality with Engage, please reach out to Rachel, Laura, or myself.

Sophie Evans is the Policy Director at Engage. You can reach her at

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