National Strategy Needed to Support Invisible Heroes of Health Care—Family Caregivers of Older Adults


TF-cropped-photo-by-andy-camp-webTerry Fulmer, PhD, RN, FAAN, AGSF
President, The John A. Hartford Foundation

(This post also appeared on The John A. Hartford Foundation blog.)

For far too long, the nearly 18 million family caregivers of older adults in the United States have been largely invisible to policymakers and our health care system, despite filling an absolutely essential role. The contributions these modern-day heroes make to the care of older adults is indispensable, and often comes at a significant cost to their own health, well-being, and financial security.

Families Caring for an Aging Americathe sweeping new report from the blue-ribbon committee convened by the prestigious National Academies of Sciences, Engineering, and Medicine, offers a clear, comprehensive, and compelling rationale for creating a national strategy to elevate the position of family caregivers within our health care system.

As the report indisputably documents, we have a growing population of older adults living longer than ever before with greater needs for assistance.  We have family members and friends performing increasingly complex care tasks for their older relatives and friends with little or no training.  We largely marginalize and ignore caregivers, which puts them and their loved ones at risk for harm.

If we are truly to reform health care, we must expand the idea of “person-centered care” to “person and family-centered care.” As a geriatric nurse, I have seen the need for a family-centered approach first-hand.  Too often family members, with little or no training or support, are thrust into the position of being responsible for everything from navigating the labyrinthine health care system to performing complicated medical tasks. This might be medication management and wound care, tasks that are normally provided by trained doctors and nurses.

Ensuring that caregivers not only receive the support and training they need, but have a role and a valued voice in decisions affecting their loved ones, are critical to improving care for older people.

The story of Ruthie R. vividly illustrates why. She allowed the committee to include in its report excerpts from emails she wrote to her cousin (a committee member) over four years of caring for her mother after she was diagnosed with dementia. After a year at home, she wrote:

“I’ve lost my career. I’ve got permanent WIWAS (Will I ever Work Again Syndrome). It really has me down today … I’m a pretty good caregiver, bobbing and weaving my way through bureaucracies, tracking down answers to questions with dogged determination, tackling confusing paperwork, keeping it all straight, trying to get what I can for my mom … I should feel good about caregiving and the work of getting to this point with her. Just 2 years ago we were in a desperate place.”

I’ve never met Ruthie R., but from my years working as a clinician, I know her story only too well. I have heard the anxiety, pain, and frustration she voices in her emails during discussions around the dining room table with other family caregivers, far too many of whom are still in that “desperate place” she writes about. And her story, and the others included in the committee’s report, mirror the stories the Foundation collected in its “Better Caregiving, Better Lives” story contest last year.

As the report notes, caregivers are at greater risk than non-caregivers for a range of health issues including higher rates of chronic disease, depressive symptoms, anxiety, stress, and emotional difficulties. When asked to rate their own health, 17 percent of caregivers say fair to poor, compared to just 10 percent of non-caregivers.

A subset of caregivers are at particular risk.  The report finds that about 8.5 million people are providing care to an older adult with “high need,” either struggling with dementia or two or more self-care needs.  With higher levels of intensity and greater duration of caregiving comes even greater potential for burn-out and health problems.

We must also pay close attention to the risks and different needs among the increasingly diverse population of older adults and their caregivers.  We must ensure we are considering cultural, linguistic, socio-economic, and other factors when addressing family caregiving.

Families Caring for an Aging America is a must-read for everyone concerned about health and health care: funders, health systems, universities, advocates, policymakers, clinicians, and all of the dedicated and selfless family caregivers and their loved ones who are on the front lines. It also is a bold call to action. The John A. Hartford Foundation, which provided lead funding for the report and has a long tradition of working to improve the lives of family caregivers and their loved ones, will continue to make this important work a top priority.

The report provides us with powerful validation of our efforts and a mandate to work in a number of areas where improvements are desperately needed in our health care system:

  • We must work systematically to identify family caregivers, assess their needs, and provide them with support and training.
  • We must reform payment policies so that family caregivers are incorporated into care delivery.
  • We must provide better training and education to clinicians and service providers so they know how to meet the needs of caregivers.
  • We must increase access to evidence-based programs and interventions that support family caregivers.

These are just a few of the actions needed to implement the national caregiver strategy called for in the report.  We hope all stakeholders will join in advancing the key recommendations of this powerful and persuasive study.

The committee convened by the National Academies of Sciences, Engineering and Medicine has done its job, and done it well. We thank them for their tireless work, passion, and valuable insights.  Now, it’s up to us—all of us—to do the hard work necessary to make the committee’s vision of a transformed health care system centered on the needs of people and their families a reality.