Thursday: doctor’s appointment, work, work, work, fight about money (medical bills), collapse, try to recover. That is how Patty and Nate spent the day they participated in the Atlas of Caregiving Pilot Study.
College sweethearts who have been together for more than a dozen years, Patty and Nate are both in their 30s, and contending with serious medical challenges. Patty was diagnosed with multiple sclerosis soon after she graduated from college and Nate has been living with a terminal brain cancer diagnosis since 2014. While Nate is stable at the moment, this stability is precarious at best—his health is poor, and though a tumor was successfully removed, it is likely that his cancer will return.
But, life around them doesn’t slow down. And, since Nate’s condition has steadied, many friends and family members who had rushed to their sides in the face of crisis have faded away, leaving them essentially on their own.
Patty cannot give up her career—it gives her great satisfaction, and they need her income to make ends meet. However, like many working caregivers, she is in a tremendously challenging position as the demands of a modern workplace take their toll.
Sociologists talk about the imbalance of the way we work today as the “flexibilization of labor,” the widespread trend of employees being expected to be more accommodating and more available than employers. This is certainly the case for Patty: “just doing her job” means being available whenever and wherever needed, whether that’s taking phone calls at any hour of the day or flying to remote locations on the spur of the moment. This often puts her in direct conflict with what she needs to do to care for herself and for Nate.
According to recent studies, more than half of family caregivers are also working a paying job, and 25 percent of them provide more than 20 hours of active, unpaid care per week in addition to that paying job.1
The work-related stress that Patty feels isn’t uncommon for caregivers—our study participants told us that it was nearly impossible to compartmentalize the day into separate times for work and caregiving—nor is it without impact on their employers. A majority of caregivers report that the demands of caregiving affect their work performance2, and it is estimated that caregiving costs the US economy more than $25B annually in lost productivity.3
Our study holds a number of lessons for employers—here a just a few:
Create a culture of acceptance. Foster an environment where caregivers do not feel that they have to hide this aspect of their lives. Educate everyone (especially non-caregiving employees) on the prevalence, importance and challenges of caregiving. Employer leadership can set the tone by being open about their own caregiving situations.
Employer programs and policies should be designed to support the human activity and experience of caregiving, and not be based on a restricted demographic mindset, such as millennials, or “45-64 year olds caring for people 80 and older.”
Extend flexibility in work scheduling to allow time for the planned and the unexpected. Work with, and support, local and national caregiver organizations to provide appropriate programs and tools such as literature, services or workshops.
The number of family caregivers in the workforce will only grow as the baby boomer generation ages. Employers have an important role to play, with direct effect on their employees, on their own corporate performance, and on the economy as a whole.
We hope that employers will consider our findings, and take action to integrate them—supporting caregivers now and for years to come.
The Atlas of Caregiving seeks to understand the lived experience of family caregivers in order to learn how we can make their lives easier. This is the second in a series of blogs that will share the study’s lessons for caregivers, employers, the tech community, service providers and researchers. You can read the initial post here.
The Atlas of Caregiving project is using cutting edge tools and analysis to study and map family caregiving—with the goal of making it easier and more effective. Our 14 Pilot participant families all live within two hours of San Francisco. Caregivers ranged in age from 30 to 73, and the care recipients from 3 to 101. They are managing a diverse set of conditions including Alzheimer’s, cancer, cerebral palsy, cystic fibrosis, diabetes and Parkinson’s.
The study combined emerging technology with traditional ethnographic interviewing to enable a comprehensive look at family caregivers’ lives. Each participant took part in some or all of the following:
– One-on-one interviews
– Logging their caregiving and non-caregiving activities, including how stressed they felt
– Wearing a Narrative Clip—a small, wearable camera, which took photos roughly every 30 seconds
– Wearing an Empatica E4—a wrist sensor, which collected data on movement, heart rate, and electrodermal activity
– Having a Netatmo Weather Station placed in their home to collect data on noise and CO2 levels, temperature and humidity
– Having SmartThings Motion Sensors placed throughout the home, which collected data on movement
The Atlas of Caregiving Pilot Study was supported by a grant from the Robert Wood Johnson Foundation, in collaboration with the Family Caregiver Alliance. You can download the Pilot Study Report here, and view case studies of all the families here.
1 AARP Public Policy Institute, The Dual Pressures of Family Caregiving and Employment, May 2016
2 AARP Public Policy Institute and National Alliance for Caregiving, Caregiving in the US, June 2015
3 Pfizer-ReACT/Gallup poll, 2011