It’s no secret that the average caregiver—providing uncompensated medical care, administrative guardianship and day-to-day support for a loved one—grapples with significant emotional, coordination and financial stressors. After all, research from AARP has shown that the average caregiver provides 24 hours of care each week. One in 5 provides more than 40 hours of care, which is the equivalent of a full-time job.
While caregivers provide essential support to their loved ones, they themselves often fail to get the support they need. The Blue Cross Blue Shield Association has found that 57% of caregivers experience clinically significant levels of stress, anxiety or depression.
That stress may be compounded by the fact that many caregivers lack formal or informal support from friends, family or the healthcare system. AARP data show 47% of individuals serve as the sole caregiver for a loved one, with another 17% providing the majority of the care. For health plans, this highlights the risk that caregiving creates—both for members who serve as caregivers and members who are dependent on caregivers.
How have we gotten to this point? First, as our care delivery system has gotten more fragmented, we have left family caregivers to connect the dots and pick up the slack. The responsibilities foisted on them are unfamiliar and push them into confusing, under-engineered processes. Second, we have assumed that they will singlehandedly navigate the health system, legal documents, social care needs and family dynamics, all in their spare time.
Carallel, which provides human-centered guidance and digital tools for family caregivers, analyzed caregiver support cases to illustrate the complexity and variety of support that caregivers truly need. Focusing on cases initiated by caregivers expressing a need for emotional support, Carallel’s expert Care Advocates discovered multiple additional factors that were contributing to their feelings of burnout.
The analysis of conversations revealed several sobering insights.
Every initial call is just the tip of an average caregiver’s iceberg of underlying needs.
For every caregiver call’s initial question or need, a Care Advocate uncovered an average of roughly five additional underlying needs during the course of the conversation. For example, someone seeking help caring for a partner with dementia may be connected with support groups, legal services, in-home care and community-based social activities.
The majority of caregivers’ underlying needs are not centered on health-related services.
About 46% of undiscovered needs are directly related to healthcare services, and mental health, disease management and in-home care are the most common unmet needs. The remaining majority—more than 54%—of caregivers’ undiscovered needs deal with something other than clinical health, such as managing stressful relationships, receiving coaching for difficult conversations, obtaining (and affording) professional services or addressing social determinants of health.
Needs of all types are thoroughly intertwined and often causal in nature.
Our breakdown of undiscovered needs shows that the average caregiver has about 2.1 health needs and 2.5 non-health needs. In other words, these needs are closely intertwined: A care recipient’s disease management needs may strain their relationship with the caregiver, require a difficult conversation about advance care planning, or benefit from nonclinical services such as food delivery.
Caregivers don’t just give care; they coordinate it, too.
Not surprisingly, mental health, chronic condition management and end-of-life care come up often in conversations with caregivers. But caregivers have additional care needs to address such as arranging for in-home care, managing medication or locating addiction/recovery services. This further emphasizes the role of the caregiver as the care coordinator, as these health needs require engaging with a range of providers and organizations.
Caregivers need supports and advocates as much as those in their care.
Half of the conversations referred to the difficulties of managing relationships as a caregiver, either with the care recipient or with other members of the family—or both. Organizations that leverage case managers or care managers—as opposed to Care Advocates with caregiving experience—as a first point of contact for caregivers may miss opportunities to address these needs, as these roles traditionally emphasize clinical care and focus less attention on interpersonal relationships.
To give caregivers the support they need, we must listen to them.
Healthcare’s burnout crisis isn’t just affecting clinical and administrative staff. It’s also impacting the 53 million American adults who take care of a loved one. Caregivers—healthcare’s hidden workforce, providing uncompensated care with an estimated value well in excess of $520 billion per year—are also dealing with the stress and anxiety of providing care amid a disjointed care delivery system with time and resources likewise in short supply.
Addressing the caregiver burnout crisis requires a human-centered approach. It’s not enough to give them a list of resources and links—effectively giving them more homework to do. In our experience, Carallel’s Care Advocates are able to build trust and uncover unexpressed needs through motivational interviewing and active listening. That connection helps caregivers feel supported and capable of working through a personalized action plan rather than feeling left on their own to address complex problems.
Caregivers play a vital but often unrecognized role in caring for their loved ones. Care often involves much more than a loved one’s health and well-being, and managing these interconnected needs makes caregiving all the more stressful. Making a range of support resources available to caregivers is an important starting point, but our analysis of caregiver needs shows that it’s just as critical to help them uncover and connect the dots between those needs and navigate to appropriate solutions.
Shara Cohen is the CEO of Carallel.