“There is not one feeling I have all the time. I get frustrated when he’s in his super slow-mode; I am worried about pneumonia when he gets a cough; I am happy when he’s joking around; and I am stressed out when dealing with his dozen or so medications. There are a lot of emotions that go into caregiving and I usually feel all of them in a single day (or hour!).” — Trish Hughes Kreis1, Family Caregiver
For much of their married life, Trish and Richard have cared for Trish’s brother Robert. Diagnosed with intractable epilepsy at age 7, Robert also suffers from Parkinsonism, Chronic Traumatic Encephalopathy, recurring pneumonia and sepsis, and difficulty swallowing.
Robert needs help with almost all of his daily functions—from eating to grooming to bathing and more—plus there are medications to give, oxygen to monitor, and doctors and professional appointments to coordinate and keep. Trish and Richard also care for Richard’s ailing mother, and Richard contends with ongoing physical pain and mobility challenges resulting from a car accident many years ago. On top of all that, both Trish and Richard continue their careers.
Their lives are frenetic—they spend much of their time quickly shifting from managing one task to another. They are frequently leaving things unfinished because something unpredictable and more urgent arises. And, as Trish’s comments above so clearly illustrate, the constant vigilance and worrying is exhausting and emotionally draining. “The not knowing is the hardest part,” says Richard. “Not knowing what is going on with Robert’s cough or with my mom’s health. It’s difficult to deal with not knowing what is going to come next.”
There are more than 43 million family caregivers in the United States. Like Trish, Richard, and Robert, their challenges are dynamic, substantial, and growing. The Atlas of Caregiving seeks to more deeply understand their lived experience, providing insight and practical tools to help make family caregivers’ lives easier.
In our pilot study, we explored one of the most ancient of human rituals—caring for one another—in an entirely modern way. In combining the latest in wearables and sensor technology with traditional ethnographic interviews, we were able to paint a much richer picture of caregivers’ day-to-day realities.
As the study progressed, our participant families became more aware of the potential for technology to ease their lives. For example, the pictures and data from Trish and Richard’s worn cameras and physiological sensors led to discussions of how these devices might support real-time analysis or rapid alerts on sleep or seizure activity. We believe that in the same way that innovations in technology are helping us research family caregivers’ lives more deeply, the bold, yet informed, thinking of the tech community can help ease these same caregivers’ lives. Here are a few of our findings:
amily caregivers often lack full awareness of their own activities, needs, and resources. They balance a complex choreography of care, across a myriad of social and medical communities, each offering its own unique set of tools and solutions. Entrepreneurs developing products for caregivers must consider where their solutions will fit; simple surveys or market research are likely to miss this broader picture.
A product or service’s overall effect on caregiving is key. From medication to transportation, caregivers manage many interrelated aspects in each fragmented day. Though individual tasks may be simplified through technology, having multiple single-point tools results in unnecessary complication. If a product makes caregiving more difficult overall, the benefits for improving a specific task may not be enough to justify its adoption or ongoing usage.
Ease-of-use and appropriate support are important. Learning a new tool should not be a burden. In an already overwhelming day, caregivers may not have the energy, inclination, or time to test a new gadget or application. Providing more than automated, self-service training and tech support can be an important differentiator—just knowing a human is there to help may be enough incentive for a caregiver to try something new.
The Atlas of Caregiving Pilot set out to answer one fundamental question: can technology be used to help understand the crisis of family caregiving? Our short answer is yes.
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 third 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 posts 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 In the published pilot study, pseudonyms were used for all participants to protect each family’s confidentiality and privacy. Trish, Richard, and Robert have provided permission to use their real names here; however, they are represented in our report and care network diagrams as Hanna, Gaston, and Harvey.