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Why We Need To Care For The Caregivers

Columbus, OH— We talk a lot about the rise individualized medicine― but that is really a misnomer. Healthcare is a team sport. Patients rarely navigate the system on their own. It takes a village.

The estimated size of that village is about 40 million in the US. These informal caregivers are the parents, spouses, siblings, friends, children and neighbors of those they care for. They provide 37 billion hours of volunteer (unpaid) assistance with medical care and daily living worth an estimated $470 billion each year. That’s roughly the annual American spending on Medicaid.

Taking care of loved ones is no easy task. With an ageing parent or sick family member, other life priorities fade away as we rush to ensure we can provide the best care.

“Sixty percent of those caring for older family members report having to reduce the number of hours they work, take a leave of absence or make other career changes. Half say they’ve gotten into work late, or had to leave early. One in five report significant financial strain. Family caregivers over 50 who leave the workforce lose, on average, more than $300,000 in wages and benefits over their lifetimes.” – New York Times

But as health systems become more and more complex with pressures to reduce costs, many health systems are increasingly relying on caregivers to manage illness at home.

Are we really giving caregivers the support they need?

“Caregivers are, on the one hand, heavily relied upon but on the other hand overlooked”– Richard Schulz, Associate Director of the Aging Institute at University of Pittsburgh.

Caregivers aren’t always clearly listed on the medical record. They are often not included in important decisions about a patient’s treatment plan— despite being expected to carry it out at home.

We also assume they’ll be able to perform complex medical tasks like changing catheters, dressing wounds or administering injections… but fewer than half of family caregivers receive training to perform them. Many caregivers feel unprepared for their medical responsibilities.

“No one asks you if you’re comfortable doing the things you’ll need to be doing, if you have the time or what other responsibilities you have.” – Laura Gitlin, Director, Center for Innovative Care in Aging

Emerging Resources

The lack of support for caregivers to starting to gain notice. The New York Times wrote at recent article about it. Experts are providing practical to do lists for family caregivers so they assert their needs at the point of care. The mobile health movement is creating resources for families to coordinate care.

Apps like Carezone and websites like Caring Bridge are creating hubs for managing medications, coordinating schedules between caregivers, tracking doctor appointments and uploading health information. While usually not tailored to specific disease states, these resources help with coordination, education and managing the tedious act of caregiving.

Why This Matters

Healthcare marketers have the opportunity to step in and support these caregivers. We’ve traditionally focused on payers, HCPs and patients. We may have missed out on engaging a crucial and often neglected provider in the healthcare system.

Providing specific tools and resources for caregivers can be challenging. There is no one type of caregiver-patient relationship. Understanding the complex dynamics of family can be troubling to manage.

The Robert Wood Johnson Foundation aimed at making sense of the complex family caregiving environment by doing a technology aided ethnographic study to visualize and define specific caregiving models. Through the Atlas of Caregiving project the research team helped shed light on the relational systems of family caregivers.

Understanding these models can provide clues for healthcare marketers to explore family caregiving in their specific disease states. User-centered design studies like this are needed to identify opportunity areas that meaningfully engage caregivers. Traditional market research and segmentation could fall short― the role caregivers play is complex.

There’s a massive opportunity to help patients achieve better health through empowering the ones who care for them. To get started, we first need to understand who they are, what they need and how we can support them.