Making Our Health Care System More Supportive and Inclusive for Caregivers

NPC President and CEO John M. O'Brien writes about how we can better incorporate the needs of caregivers into our health care system and provide them the support they deserve. 

By John M. O'Brien, NPC President and CEO

As a caregiver for my parents, I understand firsthand the challenges facing these often overlooked but vital participants in our health care system. In honor of National Family Caregivers Month this November, let’s talk about how we can better incorporate the needs of caregivers into our health care system and provide them the support they deserve.

About 1 in 5 Americans are unpaid caregivers for chronically ill, disabled, or aged family members or friends, according to a report by the National Alliance for Caregiving (NAC) and AARP. Caregiving can take many forms. Some caregivers live with their care recipient and provide help with daily activities of living such as bathing, dressing and eating. Other caregivers assist episodically with household chores and managing finances and health care, like I do for my parents. More than 60% of caregivers also work, 24% provide care to two or more adults, and more than 60% are women.

Caregivers have a unique perspective on the value of medical treatments — I witnessed how medicines helped my parents transition from cancer patients to cancer survivors. Caregivers can provide insight about the impact of medications on the lives of the people they care for, as well as on their own lives and ability to juggle their many roles as health aide, patient advocate, and health care manager and decision-maker.

Health care research is increasingly seeking to incorporate real-world evidence and patient experience data to better capture the needs and priorities of patients. We should be doing this for caregivers as well whenever possible. For instance, factors important to caregivers — such as the physical and emotional burden of caregiving and the financial cost of caregiving — should be included in value assessments of new health care interventions.

In a blog published in Health Affairs last year, NPC researchers explained why it’s critical to consider indirect benefits like caregiver burden when determining a treatment’s value and identified opportunities for capturing and improving integration of indirect benefits in health care decision-making. Improvements in indirect, less tangible outcomes can have a substantial impact on individual patients and their caregivers, as well as generate significant value for the broader social and economic environment.

Like many other caregivers, I help my parents schedule health care appointments, pick up their medications, and manage their health insurance. Even as a trained pharmacist who has worked in the field of health care for 20 years, navigating insurance issues while balancing all these other tasks is no easy feat and is often frustrating and stressful.

The NAC-AARP report states that an increasing number of caregivers (26%) say it is difficult to coordinate their recipient’s care across various providers and 27% report it is difficult to get affordable services in their recipient’s area.

Health care shouldn’t be this hard to navigate. Poorly designed, outdated health insurance can create barriers for patients and their caregivers in accessing needed treatments. Utilization management strategies such as step therapy and prior authorization are adding yet another burden on our already overburdened caregivers trying to manage their loved one’s care. Building better, more patient-centric benefit designs will improve delivery of high-quality, affordable care.

Nearly 1 in 4 caregivers also find it difficult to take care of their own health and a similar number report caregiving has made their own health worse, according to the NAC-AARP report. The stress associated with caregiving can exacerbate health issues, and if we don’t provide our caregivers with much needed support, we will create an even greater financial burden on our health care system.

I encourage my fellow caregivers to check out organizations like the Caregiver Action Network, which has an online community as well as a toolbox of resources for caregivers. The Family Caregiver Alliance also has many resources, including information on caring for yourself as a caregiver and information on research studies looking for caregiver participants.

I’ve gained meaningful perspective about our health care system in my caregiver role. I know we can do better.