Who's Caring for the Carer?

What is a caregiver? Most of us have some sort of preconceived notion of what it means to be a caregiver -- usually a family member, friend, or neighbor who cares for someone who is dealing with illness, a chronic condition, or aging-related issues without any sort of compensation. They do it simply because they want to help their loved one. But if you were to ask every person who falls under this definition if they are a caregiver, chances are high that many of them would say no.

Perhaps you have a parent or a sibling who cared for their aging parent by driving them to doctor’s appointments and making sure they were taking all their medications. Would they have called themselves a caregiver? They might have just thought “that’s what you do for someone you love.” Self-identification becomes even trickier when the work a caregiver is doing isn’t always obvious or visible. Even if that same person recognized meal prep or scheduling doctor’s appointments as caregiving work, they probably wouldn’t consider the time they spent reading through medical information from a doctor to help their loved one understand their condition, nor would they consider the hours spent in-person or on the phone providing emotional support through a difficult time.

But that’s exactly what being a caregiver is. Back in 2021, when we launched our Carer Well-Being Index, we found that across the board, in every country and every demographic, the number one task a caregiver performed was helping support their loved one’s emotional needs. This crucial work often flies under the radar, and unfortunately makes it even more difficult for caregivers to recognize how much they’re actually doing - and how much it’s impacting themselves.

Understanding and defining exactly what it means to be a caregiver, from the big tasks to the small, is important when addressing conditions like multiple sclerosis (MS). Patients with MS frequently go through varying periods of disease intensity and may even have long periods with little-to-no symptoms. This “up-and-down” nature of the disease can mean that those acting as caregivers may not fully acknowledge the impact it’s having on their lives. Even in periods where the disease is being well-treated, the caregiver is still there looking after the patient’s well-being and helping them navigate this long and, at times, difficult journey.

Caregiving is difficult - emotionally, mentally, physically, and financially. Caregivers often put so much of themselves into this role that it comes at the expense of their personal well-being. They can experience depression, burn-out, isolation, and anxiety, and they frequently report putting off their own medical appointments and physical health. It is important to be aware of and provide support to the caregivers in our life.

As a company, we have prioritized doing our part in creating a more caregiver-friendly world through our Embracing Carers^® initiative, which was launched in 2017. Its mission is to raise awareness of the challenges faced by family carers worldwide and to implement targeted initiatives to increase recognition and support for the role of these carers in healthcare systems. Embracing Carers^® drives this mission daily through collaborations with relevant organizations worldwide to increase the visibility and availability of tailored resources, including at our website www.embracingcarers.com and through the dozens of patient and caregiver groups we support around the world.

This year, we launched a new collaboration with the Global Initiative on Ageing, a UN-guided affiliate, which will provide a training course on critical skills for family caregivers. So often, caregivers are thrown into a new role and expected to know how to do all sorts of tasks they’ve never had to do before. Providing tangible support and resources, including through these newly available trainings, is the sort of impact we aim to have every single day.

As our world continues to grow alongside an aging population - there are more carers now than ever before. This National Family Caregivers Month, join us in recognizing that caregiving is essential to our healthcare system and our communities. Simply put, we cannot do it without them; so let’s make sure they don’t have to do it alone.