Family caregivers in the United States are being challenged by a swelling aging population in need of greater support and a stronger policy infrastructure.

Much room for improvement exists at both state and federal levels when it comes to recognizing the important roles that family caregivers play, according to Steven Lee, co-founder and CEO of ianacare, a Boston-based patient and caregiver resource company.

More innovative care models and disease-specific reimbursement options have widened pathways for hospice providers to improve family caregiver support, Lee said in a recent Hospice News Elevate podcast. But these fall short of addressing the diverse scope of practical, emotional and financial needs, he stated.

“Systemic change is needed to really embed family caregivers within care models for serious illnesses, and that’s working with providers and policy makers,” Lee told Hospice News. “If we’re able to [do that], we’ll be able to guide them to the resources available and appropriate for the journey they’re going through. With this aging demographic, this capacity crisis is going to get worse and worse. [The] burden is moving to the family, and it’s just not going to get better. Support for infrastructure … is going to be critical to head off the crisis.”

Among the significant issues that caregivers face is understanding the supportive resources available to them, Lee indicated. Beyond education around addressing a loved one’s medical needs, greater insight is needed into the types of benefits family caregivers are eligible to receive in both federal and state systems, he stated. A patchwork of laws exists to aid caregivers when it comes to respite, employment family medical leave policies, and financial support.

Nearly half, or 48%, of states are facing “critical” or “high-risk” family caregiving situations requiring urgent attention and greater intervention by policymakers, according to a recent study conducted by Columbia University’s Mailman School of Public Health published in Otsuka America Pharmaceutical Inc. The pharmaceutical company is a subsidiary of Otsuka Holdings Co. Ltd. (Nasdaq: OTSKF). The study examined the impact of state policies on health care infrastructure and economic conditions of family caregivers.

The study measured the number of family caregivers per 1,000 residents 65 and older, as well as the percentage caring for individuals with dementia. Several southern and western states are on the “brink of a caregiving emergency” as patient demand surpasses the volume of available loved ones to support these individuals, researchers indicated in the study. Further complicating the issue is limited availability of clinical resources and access to quality long-term care facilities, the study found.

Photo courtesy of Otsuka America Pharmaceutical

“Every state has resources, they are just really fragmented and nobody knows about them,” Lee said. “Just navigating and knowing what’s there, those are the big gaps. So many states have started to implement paid family leave, but that’s at the state level. We need it at the federal level to make it universally available.”

Though the needle has moved slightly toward improved family caregiver support in recent years, few states provide sufficient financial and training resources for these individuals, according to research published in The Milbank Quarterly multidisciplinary journal.

As of 2020, about 43 states had passed some type of legislation related to the Caregiver Advise, Record, Enable (CARE) Act, the research found. These policies require health care providers to offer education and guidance for family caregivers but often vary widely when it comes to eligibility, waivers and tax incentives to support them, researchers indicated.

However, only 20% of states have policies that exceed the Family and Medical Leave Act requirements, and less than one-quarter provide state-based protections for Medicaid beneficiaries’ spouses, the research found.

Respite and financial reprieve represent two of the biggest needs for family caregivers, with state and federal policies lagging to address these, Lee indicated. Legislation that provides better financial incentives alongside home-based care could go a long way in alleviating caregiver burden, he stated.

Some of the recently proposed federal initiatives have included laws designed to strengthen financial support for families. Proposed policies have included a potential national caregiver tax credit, grant programs for direct care workers and family caregivers, and a social security caregiver credit that would provide those wages to individuals. To date, none of these have come to fruition.

“We view caregivers as a critical part of the care team,” Lee said. “We really call [them] the invisible backbone of the health care system. At a society level we have to recognize that [and] not just rely on them, but provide the support they truly need and deserve.”