National Consumers League

November is Family Caregivers Month and a time to reexamine the role of the caregiver

By Sarah Hijaz, Health Policy Intern Sarah is a recent graduate of The George Washington University Trachtenberg of Public Policy and Public Administration, where she received a Master of Public Policy (MPP). Her main background is in public health, having worked in clinical trial protocol development and cancer health disparity research and outreach efforts. Sarah plans to pursue a Doctor of Public Health (DrPH) degree, concentrating on health policy. During the interim period before starting a DrPH program, an internship at NCL is a great opportunity to gain exposure to the advocacy side of public health and health policy.

November is Family Caregivers Month, and as President Obama describes it’s meant to “recognize and thank the humble heroes who do so much to keep our families and communities strong.” Family caregivers are individuals, including friends or neighbors that dedicate unpaid time and resources towards caring for the physical and/or mental health of a loved one. The Caregiver Action Network, a non-profit organization that provides support, education, and resources to family caregivers across the United States, has identified the theme for this year’s Family Caregivers Month as “Now More Than Ever.” 

Family caregiver advocates are increasingly calling for a shift in the focus of national conversation away from the concept that family caregivers are simply providers of care to a more relationship in which these caregivers are also integral members of loved ones’ healthcare teams. There are 90 million family caregivers in this country; that’s two out of every five adults who care for one or more family members. Certain patient populations that depend heavily on family caregiving support are rising, such as those suffering from Alzheimer’s, children with special needs, as well as wounded veterans. The overall population of adult caregivers has correspondingly risen from 30% to 39% in the past 3 years. Often, many caregivers find themselves in this challenging and complex role suddenly and with little warning or time for preparation.

Patient health issues can be purely physical, emphasizing family care activities that focus on duties such as administration of medications or household help. However, other loved ones may suffer from psychological ailments that leave them unable to take part in their care planning, transforming the family caregiver into a healthcare decision maker. Because of the many different roles that a family caregiver can play, there are rising calls for a more formal recognition of family caregivers as key members of patient-centered teams.

This past Friday, I attended a conference at The Kaiser Permanente Center for Total Health in Washington, DC. The focus of the event was “Identifying Family Caregivers in Electronic Health Records (EHRs).” Technology is beginning to play a larger role in healthcare, especially technology aimed at compiling and organizing patient information. Proponents of EHRs claim that computerizing patient health records can have many benefits, such as reducing unnecessary testing and prescribing. The push towards expanding EHRs to all healthcare settings is gaining traction; the Patient Protection and Affordable Care Act even includes elements to support this drive. While EHRs can expand patient-provider communication and improve health care, there are concerns that family caregivers might not have equal access to electronic records. Especially since family caregivers have so far been under-recognized as valid healthcare team members.

There was no doubt in the room that supporting patients/loved ones requires expanding the healthcare team to include family caregivers. However, while this concept may seem straightforward, there are plenty of questions that need to be addressed in order to incorporate this goal into EHRs. For example, are family caregivers’ formally identified in the EHR? Does the patient identify family caregivers? If so, what if the patient is suffering from dementia? At what point do caregiver demands and the seriousness of a patient’s conditions warrant the designation of someone who is “helping out” to be an official family caregiver?  There is a great deal that needs to be clarified as the healthcare system in this country continues it push towards expanded EHR systems. Family caregiving is not only an evolving role, but also is an evolving concept.

The nature of what constitutes a family caregiver is being discussed and debated. The increasing conversation on this topic can only improve our understanding and will hopefully improve care for patients under the attention of family caregivers as well as ease the burden associated with caring for a loved one. For more than 90 million Americans, Family Caregivers Month is not the only time of the year that family caregiving is recognized and reflected upon. Patients and their professional healthcare providers have long asserted the important nature of family caregiving.