Over the course of my career caring for and developing programs for people with serious illness, I have come to recognize that addressing the needs of caregivers is as essential as providing support to patients themselves. However, ensuring caregivers have the resources they need when they need them is a tremendous challenge — one made more difficult when you consider the vast number of unpaid family caregivers who often fly under the radar.
I recently discussed this central challenge in serious illness care with two of my colleagues and experts in caregiving, ARCHANGELS CEO and Co-Founder Alexandra Drane and healthcare pioneer and UPenn Gerontology Professor Dr. Mary Naylor, in a CareCentrix sponsored webinar for health plans, employers and providers entitled “The Hidden Chasm in Serious Illness Care: Reimagining Caregivers as Partners in Home-Based Care.”
Below are some of the key thought-provoking insights on the critical challenges caregivers face and potential strategies that health plans, employers, and providers can utilize to meet their evolving needs that we discussed.
What’s Causing the Caregiving Crisis?
We are reaching a crisis point in caregiving, particularly in the home, and it’s having a significant, wide-ranging impact.
“The negative consequences of [the current state of caregiving] are affecting every organization in every sector of our society,” Naylor said.
At the root of it is that caregivers are often invisible to those who could help them. Many people involved in caregiving do not identify themselves as caregivers, even though what they do undoubtedly qualifies as caregiving. Rather, many people view their caregiving responsibilities as a familial obligation and do not seek out additional support, forcing them to try and navigate a complex system and perform complex tasks without support or training, often taking on a severe financial burden in the process.
On top of these challenges, Dr. Naylor described various external headwinds that are converging and deepening the ongoing crisis.
For one, the U.S. population is aging, creating a growing demand for serious illness care. And with more care taking place at home, caregivers are being given more responsibility to provide care, adapt to new technologies, and coordinate at-home services.
When outside help is required, it’s often difficult to find because of a severe shortage of home health care aides that was further exacerbated by the pandemic. Up to 1 million people are on waitlists for these services. In addition, all of these problems are taking a disproportionate toll on Black and Latinx caregivers, deepening existing health inequities.
The Impact on Caregivers
Alexandra Drane emphasized that the effects of stress on caregivers are becoming clear. According to Drane, unpaid caregivers have seen a five-fold increase in drug and alcohol use in recent years. COVID-19 has also been an added stressor, making some caregivers feel increasingly isolated, irritable, and burned out.
Since the onset of the pandemic, caregivers in the “high” category of ARCHANGELS’ Caregiver Intensity IndexTM have tripled, demonstrating rising levels of stress for the caregiver.
These effects are most pronounced among a particular group of caregivers, known as “sandwich” caregivers, people caring for at least one person over and under the age of 18. Almost one-quarter of adults in the U.S. fall into this category, and according to recent data, of them, 52 percent will have thought about suicide in the last 30 days.
That’s a staggering number illustrating the desperate situation many caregivers find themselves in and why solutions are urgently needed.
What Caregivers are Saying
When dealing with individuals receiving serious illness care in the home, family caregivers are especially essential to consider when crafting a plan of care. They’re an integral part of achieving success for the individual receiving care, yet they face a unique set of challenges. Molly McHugh, a nursing doctoral student at the University of Pennsylvania, has been interviewing caregivers from the CareCentrix Serious Illness Care at Home program to zero in on precisely what these challenges are.
The number one concern that comes up is financial insecurity. One can imagine the challenge of navigating doctor’s visits, dealing with medical bills, and discussing treatment goals when a caregiver is also worried about how they will pay for groceries that week. Adding to this, much of the caregiver population is aging into retirement, meaning they are operating on fixed incomes and trying to support aging parents whose money may be running out.
The interviewees have also expressed that COVID isolation has made it difficult for caregivers to cope, taking away opportunities for community involvement and support, like going to church or the gym. That, combined with the emotional stress that comes with possibly losing a seriously ill loved one, can make caregivers irritable and stressed, potentially spilling over to the patient.
How Health Plans and Provider Groups can Contribute to Solutions
With all of these challenges facing caregivers, Dr. Naylor, Alexandra Drane and I discussed opportunities for healthcare organizations to step in.
Payor and provider organizations can keep caregivers from becoming additional patients by recognizing, engaging, and supporting them while they are extended and stressed as caregivers. Step one is for caregivers to find out their Intensity Score and understand what is most driving it. Knowing their Score empowers caregivers with language to share their caregiving realities and helps them feel less alone in it all.
Then, once they are sustained in their roles, organizations can treat caregivers as assets rather than potential liabilities, viewing them as new partners in at-home care delivery rather than un-trained free agents. Healthcare organizations can do this by implementing programs in the home that seek out caregivers and empower them with encouragement, resources, and a clear path to connect for direction or feedback.
Once health plans and provider groups start treating unpaid caregivers as a population that can have a real impact on their success and the success of their members, and stop thinking of them as something extra, they will move significantly closer to reaching their goals, according to Drane.
“If you’re a health plan, you’re competing for members, you’re working to retain members, and a high-intensity member is costing more,” Drane said. “If you become known as a place that does a really, really good job caring for caregivers, you’re going to get more members, retain more members, and you can take these steps to reduce costs.”
Health plans of all types – commercial, Medicare Advantage (MA), Medicaid, and more – have a lot to gain from putting more resources toward caring for caregivers. For each, there are straightforward steps they can take right now that have immense benefits for them, their members receiving care, and the unpaid caregivers who are supporting them.
Visit our Serious Illness Care at Home Caregiver webinar resource page to access a collection of valuable caregiver tools and resources for health systems, health plans, and provider organizations.
- Palliative Care
- Serious Illness Care