Jane has often been described as positive, supportive and full of energy. But that changed when she started taking on more and more tasks for her aging husband—from managing daily medications, to taking him to countless doctor appointments. While acting as an at-home nurse, she continued to prepare meals and clean the house.
Friends and family noticed Jane seemed depressed and irritable—overreacting to minor nuisances. She stopped going to her weekly swim class and her own health started to suffer, with pain in her hips and unsteadiness in her balance.
Jane was showing signs of caregiver burnout—the physical, emotional and mental exhaustion from caring for an ill or elderly loved one. Burnout can set in when a caregiver doesn’t get the help they need or if they try to do more than they are physically or financially capable of.
On both a societal and financial level, family caregivers are important. Throughout human history, we have provided care and support to our ill and aging family members. Caregivers protect and improve the well-being of our family members, keeping them out of hospitals, nursing homes or other safe and secure settings. That adds up to an estimated $375 billion worth of unpaid care annually.
The desire to help those we love is healthy and very human. But when caregiving becomes overwhelming, the impact can be disastrous. Facing months or even years of caregiving can be physically and emotionally devastating, especially when the health of those we are caring for gradually continues to deteriorate.
Caregiver burnout spreads ripples of impact throughout families and society. In a report by AARP (American Association of Retired People) and the National Alliance for Caregiving, 36% of family caregivers describe their situation as “highly stressful.” When comparing their most recent data to a previous report, they found the number of caregivers who described their health as “very good” dropped from 48% to 41%.
Another study reported four in 10 caregivers experience depression, mood swings and resentment. And the American Psychological Association found that among people age 55 to 75, caregivers show a 23% higher level of stress hormones, which can lead to high blood pressure. The study also showed caregivers have a 15% lower level of immune response, making them more vulnerable to the flu and other infections, including the potentially life-threatening COVID-19.
Caregivers need help. It’s that simple. Sometimes, help arrives in the form of relief from other family members or part-time paid help. But there is a growing number of home technologies to lighten the load on caregivers and ensure that loved ones are safe, as independent as possible, and getting the care they need.
UnitedHealthcare and the National Alliance for Caregiving asked 1,000 caregivers to evaluate 12 technologies—and these three floated to the top as showing the greatest potential.
These tools are often online, such as a health system patient portal, and help caregivers keep track of their loved one’s medical history, symptoms, medications and test results.
These provide a shared electronic log to list doctor appointments and other caregiving needs. Caregivers can also use these to request a volunteer on certain days and times, and family members and friends can use it to sign up to help.
These devices remind the patient to take prescription medications and can also dispense pills. Electronic buttons can be pressed for directions on how to take each pill (e.g., on a full stomach, avoid certain types of foods) and possible side effects to watch out for. It also alerts the caregiver by phone or email if a dosage is not removed from the device within a certain time period.
These technologies have powerful benefits to prevent caregiver burnout—helping save them time, more easily manage the logistics of caregiving, make their care recipient feel safer, increase their feelings of effectiveness as a caregiver and reduce stress.
When asked about any reason why they would not use any of the 12 technologies, the most common obstacle among caregivers was a perception that the technology could be expensive. There was minimal concern about diminishing the patient’s privacy, sense of independence or social interaction.
Caregivers certainly don’t need more added stress or expense. But sometimes, digital health tools can seem overwhelming and hard to use, especially for older caregivers. Ashley Delosh, JD, HIMSS senior manager of federal affairs, understands this double-edged sword. “As a caregiver, it’s important that you ask yourself what is most important to both you and your loved one in a connected health caregiver support tool.”
Delosh suggests asking these questions to help decided which caregiver tools might be beneficial:
Delosh said she would ask herself these questions before committing to use a piece of technology to support her in caregiving for her own parents. She remains optimistic that technology will help reduce caregiver burnout and positively impact the health and wellness of aging populations and those who care for them.
Many healthcare systems are making a digital transformation. This is proving helpful to the health and wellness of both patients and their caregivers.
Cleveland Clinic has been adopting digital health technologies across their enterprise shared Peter Rasmussen, MD, FAHA, FAANS, FSNIS, Medical Director of Digital Health and Associate Professor of Neurosurgery. This is helping advance the Clinic’s goal to transform 50% of all standard outpatient visits into virtual or technology-enabled visits by 2023. Additionally, the clinic is aiming to convert 25% of inpatient days into patient management at home using some form of technology.
Clearly, COVID-19 has sparked an enormous rise in telehealth and even prior to the pandemic, Dr. Rasmussen believed virtual visits will continue to grow, as the Clinic has seen a 95% satisfaction rate with virtual visits.
Virtual visits have proven to show huge potential for reducing caregiver burnout, allowing caregivers to arrange visits at home that take less time and create less stress and expense. Adrienne Boissy, MD, MA, is chief experience officer for the Cleveland Clinic. She did a study that showed the average patient spends over two hours and 10 minutes to travel to one of their clinic locations to see a provider and waits 20 minutes in the waiting room on average, to then spend eight minutes with the provider. Conversely, the wait time for most virtual visits is less than five minutes, with most visits lasting 10 minutes or less. Rasmussen says this is why caregivers often prefer virtual visits, since they are the ones accompanying a loved one for an in-person visit.
While some caregivers are concerned about losing personal connection with a physician, Rasmussen is confident that technology does not have to eliminate empathy. “A lot of people say to me, how do you do empathize when you're not sitting in the same room? From a clinician standpoint, what you need to do is lead that patient to believe that you are on their team, that you're caring for them.”
He shared about a virtual visit with the very worried parents of a 10-year-old girl in Minnesota with a brain arteriovenous malformation. “They were willing to fly down to see me, but I said, no, let's just do a virtual visit. There's no need to spend all of that money. The parents were a little skeptical,” recalled Rasmussen. “We were communicating for five minutes and we really hadn't gotten into any meat at all. And the mother immediately just blurted out of nowhere, ‘I don't care where this conversation is going, but you are taking care of my daughter because I can tell you care about her.’ So, if you can make that kind of connection through a video just by being human and expressing empathy and concern, you can do this through tech.”
More than ever, family members will become family caregivers. For the first time in history, older people outnumber children globally. Innovative tech solutions will become vital in supporting our aging population and the family members who care for them.
But many innovations can serve all caregivers, not just those serving the elderly, but those who are parents or caregivers to young children with medical issues. No matter the age of the loved one being cared for, anyone can be at risk for caregiver burnout.
Texas Children’s Hospital, the country’s largest pediatric hospital, recognized the need to improve the experience for parents and guardians who face long wait times to obtain appointments and delays when physicians want to refer new patients. They helped improve the caregiver experience by using technology to:
The hospital saw significant outcomes from these technologies, including an 18% increase in patient volume and expanded appointment opportunities for 83% of subspecialties across the organization. They also increased patient portal activation by 13% and allowed for nearly 22,000 appointments to be scheduled online, with 70% of those being new patients.
“While technology can improve workflow and safety, Texas Children’s Hospital is leveraging technology to give caregivers more time at their patients’ bedside.” said Philip Bradley, HIMSS regional director of analytics.
Digital tools and innovations like automation, chatbots and virtual visits are particularly essential during the COVID-19 crisis, when patients and caregivers need to reduce the risk of exposure. But far beyond a global pandemic, tech tools can improve quality of life for everyone at risk of caregiver burnout. This is digital health at its best–helping us act on the timeless human desire to care for our loved ones.
This episode of the Accelerate Health podcast explores how sharing stories can make a difference in the lives of patients and their caregivers.