Meeting the Caregivers Challenge


(The RAND Blog)

An elderly man getting served a meal by his daughter

Photo by Fred Froese/iStock

by Emily K. Chen and Jeffrey Wasserman

August 25, 2014

As practitioners of policy analysis, we have become increasingly cognizant of two important lessons. The first is that for many areas of public policy, more often than not, one size doesn't fit all. And similarly, in selecting among policy options, choices are often not mutually exclusive. That is, we often think that we have to identify the solution to a particular problem, when we can often recommend that policymakers implement several, if not many, solutions.

Two recent RAND reports call attention to a large and growing problem that will require many different solutions. The first report — Hidden Heroes: America's Military Caregivers – estimated that there are currently 5.5 million people who are caring for injured or sick service members or veterans. Over a million of these caregivers are providing care to post-9/11 veterans. They are often parents, spouses, and other relatives.

The second report, Improving Dementia Long-Term Care: A Policy Blueprint, describes the need to bolster our capacity to provide long-term services and support to people living with Alzheimer's disease and other forms of dementia. Currently, there are nearly four million people living with some type of dementia, and this number is expected to more than triple by 2050. There are also more than 15 million people who provide informal, or family, care to people with dementia.

Taken together, the reports paint a bleak picture of both the status quo and the road ahead. The Hidden Heroes report, for example, notes that military caregivers experience worse health outcomes, more strained relationships with family members, and more workplace-related problems than their non-caregiving counterparts. Similarly, the authors of the Dementia Policy Blueprint report wrote that, “Demographic trends suggest that the current heavy reliance on family caregiving is unsustainable,” as the divide between the number of people needing care and those capable of providing it widens. These two reports focus on populations — ill or injured military personnel and veterans, and people with dementia — that are unique, but that nevertheless give us a preview of the enormous long-term care challenges we will face in the decades to come.

So what are we to do? The existing long-term care infrastructure is both costly and inadequate to handle both current and future demand. Additionally, as the Hidden Heroes report notes, there is a dearth of support structures in place to help informal caregivers do what's necessary to meet the needs of the people they care for. These challenges call for a two-pronged approach that both reduces the financial burden of caregiving and enhances educational and psychosocial supports for caregivers.

Both reports note that the financial cost of caregiving can be high: for example, caregivers may need to pay for home modifications and adaptive technologies to help the care recipient, go out of pocket for health care costs, and lose income because of reduced work hours or lost jobs. Policies and programs that reduce the cost of caregiving, such as the expansion of client-directed home health care services, and high-quality, affordable adult day care programs, must be part of the solution. Encouraging or incentivizing early enrollment in long-term care insurance — which often includes benefits for home health care — is another important way that individuals can buffer their loved ones from the extreme financial costs of caregiving. And we can't be afraid to “think outside the box” to find solutions. Can we scale up adult foster care programs to help meet the rising demand for care? Are there synergies to be found between early childhood day care and elder care? Could young adults be paired with older adults to provide minimal levels of care and companionship in exchange for housing?

The second and equally important task is to understand and meet the non-financial needs of caregivers, whether these involve respite care, education, psychosocial support, or workplace support. Too often, caregivers lack information about diagnosis, prognosis, or treatment plan. Technical assistance or education is also imperative to empower caregivers of patients with complex medication regimens or medical devices such as feeding tubes. Finally, workplace policies that allow for flextime and remote work are attractive to all employees, but especially important for caregivers. Employers must embrace opportunities to support work-life balance as a way to attract and retain a talented workforce, a growing number of whom are caregivers.

None of these ideas are one-size-fits all solutions, but they don't have to be. The challenge, as we see it, is to steadily identify and bring to scale effective policies and programs to support informal caregivers.

Emily Chen is an associate behavioral scientist at the nonprofit, nonpartisan RAND Corporation and Jeffrey Wasserman is vice president and director of RAND Health.

Commentary gives RAND researchers a platform to convey insights based on their professional expertise and often on their peer-reviewed research and analysis.