Paying the Hidden Bill: How Public Health Can Support Older Adults and Informal Caregivers

Informal caregivers are the cornerstone of the long-term care system in the United States that serves older adults¹ and helps them stay in their homes and out of institutional care for as long as possible. A significant portion of elders, more than one third of community-residing Medicare beneficiaries, receive help with household or personal care tasks.² Much of this help is provided by an estimated 17.7 million³ to 34.2 million⁴ informal caregivers over an extended time period (two years or more).⁴ This unpaid labor pool is substantially larger than that of the approximately 4.4 million paid paraprofessionals in the direct care workforce (typically home and personal health aides).⁵ The United States clearly does not have the capacity to provide paid long-term care services to all who need them. Without informal care, many elders would simply go without needed services or have to move to a residential setting.¹

As Rabarison et al. (p. 1370) stress in this issue of AJPH, the need for informal caregiving is especially critical among people with dementia, who require increasingly constant (and demanding) care as their disease progresses. Rabarison et al. document that this free care is of tremendous benefit to society but often comes at great cost to caregivers. In direct value alone, they estimate that each year $41.5 billion in savings accrues to society from the free labor provided by the 3.2 million informal caregivers for people with dementia in 38 states and two territories.

But that is not the total cost: this free labor involves additional costs to caregivers in terms of lost economic opportunities and poorer health. Rabarison et al. and others document that informal caregivers are at risk for depression and anxiety and that they have lower self-rated physical health and higher levels of stress markers, obesity, and chronic disease than do noncaregivers of similar ages.^3,4 Although Rabarison et al. did not compute the value of lost wages in their study, others have estimated losses from forgone work at more than $300 000, as caregivers shift from full-time to part-time work, leave the workforce, or retire early.³ Furthermore, a significant portion (28%) of informal caregivers are members of the “sandwich generation,” with substantial responsibilities to their own minor children.⁴ This dual role is highly stressful and poses its own risks to financial, physical, and mental health.⁴

Informal caregiving allows many older adults to remain in their homes, resulting in substantial savings to the public and private entities that finance institutional care. However, informal caregivers are not getting sufficient support from these entities, the health care system, or public health institutions. Unfortunately, Rabarison et al. do not provide any detailed discussion of the policy and practice actions needed to support informal caregivers in their work.

However, two recent highly influential reports identify crucial policies and practices to support a strong informal caregiver base: a consensus report from the National Academies of Sciences, Engineering, and Medicine, Families Caring for an Aging America,³ and a white paper from the National Alliance for Caregiving (a coalition of national organizations), “From Insight to Advocacy: Addressing Family Caregiving as a National Public Health Issue.”⁶ Several key recommendations of these two expert groups largely overlap and are described here (the National Alliance for Caregiving had additional specific recommendations about integrating informal caregivers into health care teams).

SET A NATIONAL FAMILY CAREGIVING STRATEGY

The primary policy need for informal caregivers is a national family caregiving strategy. This strategy is currently under development with the passage of a recent federal law, the Recognize, Assist, Include, Support and Engage Family Caregivers Act of 2017 (Pub L No. 115-119). This law tasks the secretary of health and human services with leading the development of a strategy in concert with governmental, private-sector, and citizen stakeholders. A draft of the law first appeared in Families Caring for an Aging America, and it has been endorsed by more than 60 stakeholder organizations.³ Starting in January 2018, the secretary had up to 18 months to develop an initial strategy, including providing opportunities for public comment.

INCREASE FEDERAL FUNDING

The National Family Caregiver Support Program is the primary federal mechanism that funds services for informal caregivers. It provides excellent evidence-based support to informal caregivers by working in partnership with agencies on aging in each state. However, funding for the program has remained flat since its inception, and thus it serves only a minority of informal caregivers (700 000 in fiscal year 2014).⁷ With expanded funding, the services provided by this program (referrals, counseling, training, respite care, support groups) could be extended to many more informal caregivers.

PAY INFORMAL CAREGIVERS

The financial costs paid by informal caregivers are substantial. A number of states are experimenting with mechanisms to ease this financial burden, including allowing Medicaid enrollees to pay spouses as caregivers (12 states), mandating paid sick leave to be used to care for a family member (four states), and providing caregiver tax credits (varies among states). In addition, provision of working “credits” in the federal Social Security system has been proposed numerous times but not yet implemented.

IDENTIFY AND ENGAGE FAMILY CAREGIVERS

There is no organized national effort to identify informal caregivers and connect them to existing support networks. The majority of informal caregivers are not asked about caregiving by care recipients’ health care providers, even though this is a natural means of identifying caregivers and engaging them with the health care team.⁴ Various recommendations have been made about Medicare or Medicaid payment reforms to motivate providers to engage caregivers, although limited action has been taken. Compensating providers for substantive time spent is critical. However, identifying caregivers is a straightforward policy that health care institutions can adopt without waiting for a payment mechanism.

PUBLIC HEALTH CALL TO ACTION

Most older adults want to stay in their homes and communities, and it is the many hours of unpaid, informal care that allow them to do so. Aging and caregiving are key public health issues that will become more prominent as the US population ages and life spans increase. Policy action and practice changes to strengthen the pool of informal caregivers are needed now as demographic factors are working to diminish the future pool of adults who can serve as informal caregivers. This is a population-level problem, and a public health focus will increase the effectiveness of these policies.

First, public health must become engaged through providing input into the national family caregiving strategy at every opportunity. This strategy from the Department of Health and Human Services will be the national blueprint for how the United States addresses informal caregiving, and it needs to be infused with a public health perspective.

Second, public health and health care institutions can adopt policies to identify, engage, and include informal caregivers in health care settings. Third, public health professionals can help alleviate the financial strain on informal caregivers by advocating for implementation of evidence-based policies found to provide financial relief to these caregivers.

Finally, public health professionals can work with existing caregiver advocacy groups at the local, state, and national levels to infuse a public health sensibility into the caregiving policy debate. By taking action and advocating for supportive policies, public health can help ensure that elders get the care they need, in their own homes, from the people who love them.