Family Caregivers are Hurting and Help Isn't Coming Fast Enough.

Since Covid 19 appeared in the United States, there has been a great deal of appreciation and recognition of healthcare professionals and support staff in the hospital and clinic setting. As a healthcare professional myself, I know the sacrifice they are making and am passionate about bringing awareness to the struggle they are facing, every chance I can get. They truly are heroes.

What isn’t talked about as much is the important role and impact on family caregivers. There are well over 100 million family caregivers in the United States alone. Let me say that number again, 100 million. These are the individuals I call and consider “caregivers.” The term “caregiver” has been used loosely and interchangeably but to clarify for the point I am making here, caregiver means a non-paid family member rather than a healthcare professional or home care worker. Family caregivers have been struggling for many, many years. Ten years ago, when I started my professional patient advocacy service, I saw how they were struggling and how little support or recognition they received. I felt I was the only one back then, trying to bring recognition to the importance of their role as members of a care team that were, in fact, managing all aspects of care. I got more blank stares than I care to remember when I talked about how stressed out they were and how they were working full time in addition to spending countless hours assisting a loved one with essential, often life saving, care.

It was frustrating and disheartening but I was determined to do all that I could. I saw that they were drowning and I could barely keep up with the referrals and requests for my service. I walked with them side by side, guiding them through the complexities of the healthcare system. I helped them weigh the options of keeping their loved one at home or moving them to a care facility and breaking down the costs of both options. I created a technology solution for them to better manage medication lists, medical records, legal documents and daily communication so everyone was on the same page and the right information was getting to everyone who needed to have it. I learned so much during those years. I learned what caregivers really do, what they really need and how lonely their role is. I am very pleased to say that over the past 1-2 years, recognition has slowly grown. Employers are starting to recognize caregiving is an issue for a number of their employees. That is a very good thing but while employers and others are starting to see there is a problem, those of us who have known about it for a long time are seeing that implementation of solutions aren’t coming fast enough.

The willingness to take action and offer support aren’t high enough on the priority list so caregivers continue to fall behind financially, physically and emotionally.

We aren’t talking about 5%, 10% or even 20% of a workforce. Oh no, 35-60% of Americans are involved in caring for a loved one in some capacity. These aren’t only individuals caring for an aging parent. These are husbands caring for wives with cancer, moms and dads caring for a child with a physical or developmental disability and siblings caring for a sister or brother with mental illness. They are men and women of all ages. In fact, 25% of caregivers are millennials and are caring for more than one generation in addition to starting their own family, or trying to do so.

Ten years ago there was very little data but now the data is here, staring us in the face. We know caregivers are 70% more likely to suffer from depression and anxiety, we know they are working an additional 30-35+ hours per week in the role of caregiver. We are well aware that 80% of caregivers admit they are less productive at work because they are worrying about their loved one or actually carrying out caregiving tasks such as making medical appointments, relaying information to family or paid care providers and making sure their loved one’s medications are picked up. We know they are using their own savings and retirement to pay for the care their loved one depends on. Still, too many who can, don’t take action to offer real support.

Covid 19 has hit family caregivers hard and there is still too little being done to support them. Their role is more important than ever before. They are getting tired and the longer everyone ignores the problem, the worse it will become. Healthcare systems do not have the capacity to deal with the influx of Covid 19 patients. Some of the reasons for this are beyond their control, others are because of the cracks that have existed in the healthcare system for as long as I have worked in it and probably longer. There have been communication gaps all along that have lead to mistakes and suboptimal care outcomes. This isn’t because healthcare professionals don’t care or because healthcare administrators don’t care. The reasons are many, complex and could take years to correct. Other problems, however, can be addressed right now and will have a tremendous impact. The point is, at the healthcare system becomes more overwhelmed, more responsibility is on the shoulders of family members assisting their loved one with care. It's great that virtual clinic visits are an option and are growing dramatically in popularity but nobody is talking about the necessity of family caregivers who are often necessary to assist with the visit.

Nobody is talking about how the family caregiver can actually take their loved ones blood pressure, temperature or heart rate so the doctor has that extra important information to make a diagnosis or treatment plan.

Who is logging in for the visit? Who is holding the phone so the provider can see a rash or swollen ankles or give supporting information? The ever invisible family caregiver.

Family caregivers, who have struggled to be included in the care conversations under normal circumstances, are now being left completely out in the cold. I have been fielding increasing requests to assist or offer guidance to family caregivers who have loved ones in the hospital but who are not able to go see them because of the pandemic. Most of them do not have Covid 19. Some have children in intensive care because of a trauma, others have mothers and fathers with heart disease that has progressed to heart failure and still others have loved ones diagnosed with cancer with surgery being postponed because of the virus. I understand the steps put in place to protect patients and the public. What I don't understand is that there seems to be little or no effort to make accommodations to communicate with these crucial members of the care team. The pain this causes is, quite honestly, excruciating and unnecessary. Secure communication platforms made for caregivers, like alska can be implemented quickly and 100% virtually. It would save precious time for healthcare providers and offer peace of mind to families who are worried about their loved ones.

It is time everyone start to not only recognize, but take action to support family caregivers. Employers need to offer solutions like additional paid time off, flexible schedules when possible and proven solutions that offer a method of assisting caregivers with better ways of organizing care and accessing resources and support like alska. We have seen a dramatic increase in individual caregivers utilizing our solution since the Covid 19 outbreak. We have also seen an increase in employers requesting to learn more about offering our solution but it’s still not moving fast enough. This isn’t a new problem, caregivers have been here and I, along with others, have created solutions. It’s about time everybody else catches up.

Michelle Chaffee CEO & Founder alska/ connected caregiving