The Caregiver Syndrome Epidemic
Apr 11, 2023
Family caregivers are often faced with a unique set of challenges as they juggle the demands of work, family and caregiving. From managing complex medical tasks to navigating legal and financial issues, it can be difficult for caregivers to find balance in their lives while providing the best possible care for their loved ones. At the end of life, it is common for a family member (usually an adult daughter) to be suddenly thrown into a position where they are fully responsible for the care of their dying loved one. Although hospice services help tremendously with structuring a care plan and receiving the necessary equipment and medications to provide this care, the family is still responsible for the majority of hands-on care. Because the current system leaves most of the work to unpaid family members, it takes a toll on already stressed and grieving individuals and leads to Caregiver Syndrome – a silent epidemic that is taking place in our country and around the world as a direct result of an inadequate elder and end-of-life care system. We can, and we must do better.
Unfortunately, many family caregivers don’t have access to the resources they need or know where to turn when overwhelmed. Reimbursement structures for hospices make it difficult for the staff to deliver their required services and also train these family caregivers properly to perform their duties. Since hospice serves primarily in an advisory role, families are often left to deal with scary situations like managing pain and discomfort with no prior experience. Situations like breathing issues, not being able to swallow anymore, terminal restlessness, etc. can be extremely distressing for both patients and their loved ones. This is only compounded by not having the adequate education and resources to deal with them effectively. So, how do we better prepare family caregivers and better support them through these situations? Fortunately, there are now more tools available than ever before that can help make a difference. In this blog post, we will discuss some of these tools and how you can use them to support your own caregiving journey. By understanding these resources and the impact Caregiver Syndrome can have, you can take steps to better manage your caregiving responsibilities and assist others.
Technology is one of the most useful tools for family caregivers. The ability to get the needed information and resources directly to them inside their home is crucial to help fix these systemic issues. For example, there are apps that allow you to keep track of medications, appointments and important documents. At Doulagivers Institute, we are always offering free resources to family caregivers covering everything from planning ahead and protecting your wishes, practical skills for caring for someone who is dying, the power of forgiveness and how to access it, to grief and bereavement support. Our free resources are available and accessible to everyone with internet access 24/7. Our Certified Doulagivers have also been trained in providing “Tele-Doula” services which provide virtual consultations and access to a trained professional when in-person support isn’t possible or adequate. Technology is a great way for family caregivers to access the resources they need without having to leave the home – this is the most immediate need right now!
Announcing the Newest Addition to our Free Resource Center for Family Caregivers – The Doulagivers Caregiver Checklist: Caring for the Caregiver!
We’re proud to announce the FREE Doulagivers Caregiver Checklist: Caring for the Caregiver as the newest addition to our growing catalog of free resources for those navigating the end of life.
Let’s talk about Caregiver Syndrome for a minute. Caregiver Syndrome is the proper term for the stress that people experience when caring for those at the end of life. It is used to describe the physical, emotional, and mental health symptoms that arise due to the overwhelming burden caregiving places on individuals. An average of 2.5 to 3 million people experience the end of life each year in the United States, 75% of which are expected, rather than sudden. At the same time, there are an estimated 44 million Americans aged 18 and older who provide unpaid assistance and support to the elderly and those at the end of life. Evidence shows that most of these caregivers are ill-prepared and provide care with little to no assistance. Family members of dying patients are being thrown into caregiver roles with no prior experience or adequate training and there is currently a massive “gap” in support that exists in the mainstream end-of-life care industry. This leads to extremely bad outcomes more often than not and diminishes the quality of life of both patients and their families during the end-of-life journey.
Caregiver Syndrome is becoming a much more widely recognized phenomenon and with that, there needs to be an increased awareness of the signs and symptoms of Caregiver Syndrome so that individuals can identify when they or someone they know is suffering from it.
- Emotional Distress – Watching someone you love nearing the end of their life and not having the time or clearheadedness to process it in a healthy way leads to complicated grief for many Family Caregivers.
- Physical Exhaustion – Caring for someone who is dying can be extremely physically demanding and intense. Most Family Caregivers have to figure out a way to provide this care to the best of their ability by themselves.
- Mental Health Deterioration – Taking care of a loved one at the end of life can take a toll on your mental health, so it’s important to recognize the signs and seek help if needed. Depression is a serious symptom of Caregiver Syndrome due to the physical, emotional, and mental toll of unsupported caregiving.
Now that we know the symptoms of Caregiver Syndrome, let’s discuss the underlying causes of this problem. Caregiver Syndrome is a systemic issue that can be traced back to multiple sources, such as financial strain, lack of support and resources, and time management challenges. Caregiving can be extremely stressful and the burden of navigating an end of life journey often falls solely on family members who are unprepared for the task at hand. This has resulted in Caregiver Syndrome being more common than ever before. In fact, the modern-day end-of-life care system that we use in the United States is specifically designed to outsource the bulk of labor-intensive care to the family of the dying person.
The increasing burden on loved ones – especially spouses – is reaching a breaking point according to a study conducted by Katherine Ornstein, a former associate professor of geriatrics and palliative medicine at Mount Sinai Hospital in New York and the current Director of the Center for Equity in Aging at John Hopkins School of Nursing. “Our long-term-care system in this country is really using families – unpaid family members. That’s our situation,” said Ornstein in an interview with NPR in January of 2020.
Caregiver Syndrome has become an epidemic in our nation and it’s time to start looking for new solutions. Like most societal challenges, Caregiver Syndrome has the largest negative impact on marginalized communities – namely women and people of color. This unfair burden prevents family caregivers from living their own lives, pursuing their own dreams, and leads to emotional turmoil, physical burnout, and the deterioration of mental health and depression. There is a lack of adequate palliative and hospice care across many communities and solutions that address the root causes of Caregiver Syndrome, not just the symptoms, must be explored and expanded. Doulagivers Institute is drawing attention to this problem by advocating on behalf of the caregivers who have been forgotten and exploited by our current system. We must create a better end-of-life care model that properly supports family members so they can effectively provide the care they are unexpectedly asked to give.
By understanding Caregiver Syndrome, providing comprehensive education and resources, and advocating for more support for families, we can help reduce the toll Caregiver Syndrome takes on those navigating the end of life. Caregiving doesn’t have to be faced alone – there is help out there and it’s easier than ever to access the necessary tools and resources to achieve better outcomes. With these tools, family caregivers can take back control of their health while still providing quality care for their dying loved ones.
Caregiver Syndrome affects millions of Americans each year; however, it can be better addressed by providing comprehensive education, resources, and more support to families in need. If you are a family caregiver or know someone that is, please take advantage of the free resources available to you at Doulagivers Institute. With the right education, information, and support Caregiver Syndrome can be managed and handled correctly. You are not alone! We are here to provide you with support and guidance on any end-of-life care needs you may have. Doulagivers Institute is here to help you and your loved ones on this journey.
Download the FREE Doulagivers Caregiver Checklist Here. This free resource was created to help you manage the symptoms of Caregiver Syndrome effectively and support those who are active caregivers for their loved ones.