Caregivers Need Proper Care, Too
Every day in the United States, another 10,000 Baby Boomers turn 65. Consequently, more and more people will be called upon to be caregivers. Until you’ve been a caregiver, it’s difficult to understand the responsibilities and challenges that come with it. And there’s usually little time to prepare—someone close to you becomes sick and suddenly you go from being a “lay person” to an “expert” in some aspect of clinical medicine in a matter of weeks.
A typical caregiver may start out having no clue as to what the doctor is talking about in initial visits, but then end up being able to explain the disease epidemiology and even the mechanism of action (MOA) of a medicine to the extended circle of family and friends. Caregiving can be as much about taking on the responsibility of knowing the clinical aspects of a disease as it is about supporting a patient on an emotional level.
Caregivers are like chicken soup and a walking health encyclopedia all rolled into one.
The job of a caregiver is to support their family member/friend on multiple fronts. It’s about treating the patient with empathy while having a true understanding of the health issue (or issues) at hand. Some patients may choose to educate themselves about their illness; however, they often rely on others, namely the caregiver, to understand their illness and guide them during treatment. There’s also a complex insurance or reimbursement system to navigate; this, too, often falls on the caregiver. And so for most caregivers, this means a deep level of understanding of some pretty complicated subjects that aren’t normally their area of expertise.
Being a caregiver poses other challenges. First, there are logistics to navigate. Will caring for the loved one require taking time off from work? Relocating to another city or state? Or will things have to be managed “long distance” via phone calls, e-mails, and/or frequent visits? Ultimately, these questions all track back to the issue of how one’s own life and responsibilities will be balanced in the face of this newly added role.
And caretaking can take a heavy emotional toll. A caretaker is intimately involved with all the intricacies of a loved one’s health situation, as well as their day-to-day functioning. At the same time, they’re trying to keep everything as normal as possible in their own life, even though things aren’t normal at all. They are learning how to care for a sick person, as well as experiencing for themselves what it means to live with illness.
A changing landscape for caregivers.
One of the stark realities of an aging population and a geographically dispersed next generation is that caregiving today is a lot more complicated than ever before. Today’s average 65 year old can expect to live another 20.4 years, and 85% of people 65 years and over will require some form of caregiving assistance within their lifetime.
More and more, people who are not in close proximity to a family member or loved one in need of caretaking are still taking on that role. Researching conditions, healthcare providers, and therapy options is invaluable and can be done remotely. In fact, sometimes someone not directly providing the day-to-day care can provide this kind of support more easily and perhaps more effectively.
But there’s also a high cost associated with remote caregiver support since it sometimes depends on professional nurses, institutions, and support organizations. And given that family caregivers provide an estimated $375 billion worth of uncompensated care to loved ones annually, the hard costs of caregiving in America are going to be significant in the near future.
Taking care of solutions.
Whether the need for caregiving stems from elected or timed events like surgery or chemotherapy, reacting to emergencies, or managing chronic conditions, each has distinct needs and challenges for the caregiver. Thankfully, there is growing recognition of these needs, and various organizations—both nonprofit and commercial ventures—are beginning to develop technology-supported solutions for them. Among the most valued features of electronically enabled support systems are condition tracking, medication reminders, and caregiving coordination through shared calendars. Electronic health records, reminder devices, and information access tools are all helping to bridge the gap between what a caregiver is being tasked with and what they can deliver.
But the solution also lies in how our society as a whole—and this includes individuals, families, businesses, corporations, healthcare providers, and healthcare plans—views the role of the caregiver, and what that means. One thing is clear: Being a caregiver often involves more than providing emotional empathy and chicken soup. Caregivers are making informed, smart decisions that help drive better health outcomes.
References: National Alliance for Caregiving. e-Connected Family Caregiver, January 2011, and National Alliance for Caregiving in collaboration with AARP. Caregiving in the US, 2009.