John Dowd of Worcester moved back home a few years ago to care for his father, who had Alzheimer’s disease, while managing his own job in field service, a position that required him to travel. He relied on a panoply of technology to make it work: internet-connected security cameras, shoes with GPS tracking insoles, door alarms, medication dispensers with alerts, Google Calendar and lots of texting among his eight siblings for the “constant rotation” of people bringing in dinners.
His father, former firefighter Thomas Dowd, died last September.
The benefit of technology, Mr. Dowd said, was, “We were able to keep him in the home longer, without having a lot of other care. He was in his comfort zone.”
Michelle Edelstein, Sutton Senior Center director, cares long-distance for her parents in Cooperstown, New York, who have chronic health problems. In between regular visits home, she joins their doctors’ visits via Skype and communicates with their health care providers through MyChart, a patient portal integrated into their electronic health record system.
Taking care of an elderly relative or child with a chronic illness at home can be practically a full-time job, one that many people perform on top of their paid employment and other family responsibilities. There are medical visits to coordinate, health conditions to monitor, and transportation, finances and meals to manage – tasks that are largely done alone, without pay and without a break.
It’s a role more than 650,000 family caregivers in Massachusetts take on, providing nearly 800 million hours of unpaid care annually, valued at approximately $11.6 billion, according to an AARP 2015 survey.
A survey sponsored by the Massachusetts eHealth Initiative at the MassTech Collaborative, and conducted by MassINC Polling Group, found that technology from apps and websites to remote monitors can make caregivers’ jobs easier.
But caregivers are either unaware of the options available to them or are aware of too many options and do not know how to choose among them.
“Caregivers and Digital Health: A Survey of Trends and Attitudes of Massachusetts Family Caregivers,” polled 700 non-professional caregivers in the state about their caregiving experience and how technologies could help. A caregiver was defined as an adult partly or fully responsible for the care or the coordination of the medical care of anyone who requires frequent care, and who spent at least two hours a week on care-related tasks.
The survey found that caregivers are overwhelmingly stressed, depressed and feel isolated as a result of their 24-7, 365-day lifestyle.
Caregivers reported the most common challenge didn’t have to do with the complexities of providing care, but rather the time and energy required while trying to balance caregiving tasks with their personal lives.
The most appealing technologies for these home-based caregivers were those that can serve as a platform to facilitate peer-to-peer support, provide access to medical care and resources, or manage or consolidate tasks and times, according to the report.
Two years ago, Debra Dowd-Foley, a caregiver specialist at Elder Services of Worcester Area, started a program with her colleagues at Montachusett Home Care in Leominster and Tri-Valley Inc. in Dudley to talk about different ways caregivers can use technology to support their role.
Ms. Dowd-Foley is also one of Mr. Dowd’s siblings who helped him juggle caregiving.
The program is “about how to use things they already know about, but use it in a different light,” Ms. Dowd-Foley said. “It is changing so fast. It’s mind-boggling.”
Covering the basics of social media websites and blogs, to caregiving tools in mobile apps, the program starts with definitions of digital terms like hashtag and podcast and provides examples of sites or apps that caregivers might find useful.
“Just knowing that Facebook and Pinterest have information for caregivers, or a group,” can help stressed-out, time-limited caregivers find support, Ms. Dowd-Foley said.
Blogs such as “Dementia Diaries: A Journey with Dementia,” can let people know that they’re not alone in their struggles.
YouTube isn’t just for cat videos and comedy re-runs, either. Channels such as Teepa Snow’s Positive Approach to Care series on dementia or UCLA Health’s presentations on caregiving and dementia also provide guidance that is easy for caregivers to access.
Ms. Dowd-Foley said that online forums “give people a place to get some tips and ideas. But we discourage people from taking medical or legal advice.”
Tools to manage the appointments, medications, insurance information and other necessary details of caregiving can be found online and in smartphone apps too, such as CareZone, a caregiving organizing app.
Scheduling can be shared on a Google Calendar or websites including Lotsa Helping Hands and VolunteerSignup.
Ms. Dowd-Foley said that relaxation, meditation or music apps can relieve stress for the caregiver and help calm a person with dementia who is receiving care.
“It gets people thinking a little differently about finding ways to support themselves,” she said about the agencies’ digital technology and caregiving presentation.
Ms. Edelstein, at Sutton Senior Center, said that both seniors and family caregivers enjoy the center’s Facebook page, which features photos of activities and informative events. “They’re showing these things to their kids, and they love it,” she said.
“The tough thing we see around here is limited family involvement,” she said. “Either the kids are working or they live far away.”
The Senior Center is looking to hop on another technology tool soon, to help seniors with transportation: the ride-sharing app Uber.
“This program is designed for people who don’t have smartphones,” said Clarke Alderman, Senior Center outreach director.
Through Uber’s Safe Rides program, billing and ride requests would be handled through the Senior Center, so seniors wouldn’t have to have a smartphone or set up an online credit card account. Ms. Edelstein said she hoped to get the program started by fall.
The Sutton Senior Center is served by the South Central Massachusetts Elderbus, but the schedule is limited and doesn’t go to Milford Regional Medical Center, where some seniors receive health care, according to Ms. Edelstein.
Dr. Lawrence Garber, director of informatics and an internal medicine physician at Reliant Medical Group in Worcester, said Reliant has been encouraging patients for years to sign up for MyChart, its patient portal to integrated electronic health records. MyChart is an Epic Systems software product.
Approximately 40 percent to 50 percent of patients have signed up, and 5 to 10 percent of Reliant’s elderly patients have assigned proxy access to a caregiver, which allows them to see everything in the chart, get alerts when there are new results, set up appointments and ask questions.
“They love it,” Dr. Garber said. “They’re actively engaged in sending messages. It’s convenient.”
Reliant “has tried to make this one-stop shopping,” according to Dr. Garber, so patients and proxy caregivers can get all their electronic health information in one place.
Dr. Garber said Reliant is working on turning on video visits in a secure way that complies with federal Health Insurance Portability and Accountability Act requirements.
They’re also looking at extending online health monitoring from the current group of high-risk patients with high blood pressure, to patients with congestive heart failure. Not only can blood pressure measurements be sent electronically, but also patients’ weight can be sent by internet-connected scales.
The Massachusetts eHealth Initiative commissioned the report in its role as the state’s point agency for the Massachusetts Digital Health Initiative, a public-private partnership that aims to accelerate the competitiveness of the state’s digital health care cluster, according to a news release accompanying the survey.
Laurance Stuntz, MeHI director, said in a statement: “This research is the foundation for a statewide conversation around the role that technology can play in a major health and economic challenge for Massachusetts: helping improve the lives of caregivers.”