Opinion | We Can Do More to Help Our Patients’ Caregivers

Unpaid family caregivers — the friends and relatives who step in to play the pivotal role of caring for their loved ones impacted by illness — are the invisible backbone of healthcare systems around the world. They provide invaluable support for our patients. Without these selfless individuals, our healthcare systems would surely crumble.

As a former practicing neurologist, I’ve seen the important role that unpaid caregivers play in the lives of my patients. These people work untold hours to help their loved ones navigate illness, often to their self-detriment; caregivers are so focused on the responsibility of caring for others that they have little time or thought for themselves.

Depending on the severity of the disease, the toll on caregivers can be incredibly high. One such illness where I’ve seen a significant impact is multiple sclerosis (MS), a progressive disease of the central nervous system that tends to manifest with symptoms impacting vision, sensation, and mobility.

As you may know, many people living with MS often need support at some stage following their diagnosis; as a result, a loved one typically steps in to aid the MS patient, with everything from basic chores to administering medication. According to data assessed from the Global Carer Well-Being Index, the experiences of MS caregivers are deteriorating, with higher physical and emotional strain today compared to before the pandemic.

But those caring for MS aren’t alone. These challenges have been felt across caregivers of all disease areas. For instance, as the index shows, mental health was a deeper strain for caregivers who helped those impacted by cancer compared to other conditions and illnesses included in the index.

No matter the illness, one thing is clear: caregivers themselves often go unsupported, despite the vital role they play. And while awareness about their value and unmet needs is growing, there is much to be done to give caregivers the recognition and support they so desperately need.

As a healthcare professional, I understand the busy schedule of doctors, nurses, and other medical professionals — the focus is always on the patient. But I also know that research shows that a caregiver’s mental health can adversely affect patient outcomes.

There’s more we can do as healthcare professionals to help and improve the experiences of caregivers. Here are a few tips to consider:

Provide guidance at the onset. The very simple act of providing some assistance — whether a checklist, Q&A, or otherwise — when someone’s loved one is diagnosed can help caregivers better navigate this experience. It is incredibly difficult to be thrust into this role; but the National Institute on Aging and leading carer organizations have found that orientation can help.

Involve the caregiver. By encouraging a caregiver’s attendance at medical appointments, being inclusive and welcoming at the appointment, and working to communicate information carefully, we can vastly improve the experiences of these caregivers.

Leverage the strength of the full healthcare team. It’s important to acknowledge that caring for both the patient and their caregiver is a team effort. Medical doctors don’t have the bandwidth to do everything on their own; nurses and other team members are incredibly knowledgeable, and can advise with their own expertise. They can play important roles in fostering communication and supporting family caregivers.

Build trust and empathy. When engaging caregivers, communicating in an empathetic manner is critical. Something as simple as acknowledging a caregiver’s struggles can go a long way toward building that relationship and creating a baseline level of comfort. This can boost the caregiver’s courage to ask questions that will better help the patient in need.

Lean into digital solutions. Providing shared access to the patient portal, with caregivers using their own identity, could help enhance the caregiver’s status and role. This may require a certain level of telehealth awareness and training, but the ability to view doctor’s notes, medication lists, and the like can help a caregiver manage the needs of their loved ones.

Simple, scalable strategies such as these are the first steps toward healthcare professionals playing a key role in improving the lives of our patient’s caregivers. True impact will require collective effort across the healthcare continuum.

Kirk Taylor, MD, is SVP of North American Medical Affairs at EMD Serono, the healthcare business of Merck KGaA, Darmstadt, Germany.