Industry Voices—Why the industry must address family caregiver burnout holistically

The federal government has put the 53 million Americans who are family caregivers in the spotlight.  

The Biden Administration’s April 2023 Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers calls them out specifically, imploring the Centers for Medicare and Medicaid Services (CMS) to take action to support this population. 

And CMS answered the call. In the last months, it released a new care model for dementia patients (the Guiding an Improved Dementia Experience, or GUIDE, Model) that highlights the necessity of caregiver support, and also proposed paying providers to train caregivers in specific instances as part of its 2024 Medicare Physician Fee Schedule proposed rule. 

As president and CEO of Carallel, a company that supports, guides and assists caregivers, I am thrilled to see CMS recognize the primacy of caregivers, and the agency’s recent action is a great start. There are two areas that stand out to me as where we need to push the envelope, so we can finally address caregivers as whole people, instead of an extension of the patient they love.  

Respite is so needed. But, it is not enough. 

The GUIDE Model for dementia patients emphasizes two things for caregivers: training and respite care. Participants in the model will need to connect caregivers with education on best practices for caring for a loved one with dementia, as well as respite services, which enable caregivers to take temporary breaks from their duties. 

Respite is a great starting point because time away from caregiving duties is vital to decompress, maintain your own health, and oftentimes, work. But respite care does not solve caregiver burnout—and 57% of caregivers report feeling significant levels of stress, anxiety or depression. 

We need to ensure respite is available for caregivers, but also must address the root causes of what makes caregiving hard: feeling isolated, having no outlet to vent, and feeling lost in a sea of disparate providers, processes and procedures. It’s the time-consuming and confusing duties of care coordination and legal planning, the weight of financial planning, coupled with being blindsided by disease symptoms that often magnify relationship conflicts, that make the caregiver’s role virtually impossible to tackle without a breakdown in emotional and physical health — even if they do have time away. 

Addressing those root causes means providing services that build resilience and help caregivers become confident in their abilities, widen their network of support, and learn self-care practices and problem-solving skills.  

A Carallel study found that a robust caregiver support and assistance program that focuses on building resilience led to a 43% reduction in caregivers reporting high or very high stress and a 60% improvement in caregivers reporting high or very high confidence in their ability to care for a loved one. 

Clinical training is not enough. 

I firmly believe caregivers need training on daily clinical tasks they’ll need to care for a loved one in the home. From medication adherence to taking blood pressure readings to in-home dialysis and beyond, caregivers need the guidance of professionals to keep their loved ones well. 

But caregiving isn’t only about clinical tasks.  

Carallel analyzed caregiver support cases from caregivers who called one of our Care Advocates. We found that, beyond the reason for the initial call, Care Advocates uncovered an average of five additional underlying needs. About 54% of those previously undiscovered needs were about something other than clinical tasks—like managing a strained, changing relationship with their loved one, obtaining professional services, or coaching on how to deal with difficult conversations. (Read more about our analysis here.) 

Caregivers need wraparound, specialized assistance—an expansion of their circle of care. We need to equip them with the skills to recognize their own limits, to problem solve, and to confidently tackle clinical as well as social, emotional, financial, interpersonal and organizational challenges and continue caring for their loved ones. 

The National Strategy to Support Family Caregivers helps recognize caregivers as vital parts of the healthcare system and an important spoke of the patient-centered care model.  

If we center on caregivers, giving them their own support spokes via clinical training and respite care—bolstered by an emotional support system, coaching, training “beyond the clinical” and access to organizational tools—then we will truly empower them to keep themselves and their loved ones living (and dying) well.  

Shara Cohen is the president and CEO of Carallel.