As a neuropsychologist trained in developing technology for cognitively impaired older adults, Alyssa Weakley’s research at the University of California, Davis, made her acutely aware of the challenges of long-distance caregiving.

Still, when her proudly independent grandmother in 2018 began showing signs of what would ultimately be diagnosed as early-stage Alzheimer’s, the situation took her and her family by surprise.

Her grandmother, in her 70s, lived alone in Southern California; Weakley and her family were scattered throughout Northern California and Washington.

“There were a whole host of things that made independent living challenging for her,” Weakley recalled. “But there was nobody really there to provide her with care.”

Soon, she and her family found themselves in a position shared by nearly 6 million other Americans, acting as caregivers from a complicated and often distressing distance. According to a 2020 AARP report, long-distance caregivers represent more than 1 in 10 of the country’s estimated 53 million family caregivers, meaning they live an hour or more from their care recipient; on average, they live about 450 miles away.

“Long-distance caregivers have not been adequately recognized as legitimate sources of care because of the physical distance that makes their contributions less apparent or visible,” said Francesca Falzarano, an assistant professor of gerontology at the University of Southern California in Los Angeles. “However, we have and will continue to see an increase in individuals who find themselves providing, coordinating and managing care from afar.”

Besides presenting logistical and financial challenges, these situations can be emotionally taxing as family members worry about not being there for care recipients in times of need. Nearly half (47%) of long-distance caregivers report emotional distress, compared to 28% of those who live less than an hour away, according to a report compiled by the AARP and National Alliance for Caregiving.

“Caring for a loved one long-distance can be utterly overwhelming,” said Nancy LeaMond, AARP’s executive vice president and chief advocacy and engagement officer.

According to the results of an AARP survey of women aged 50 and older released last week, 87% of respondents support making paid family leave benefits available to family caregivers, including 55% who "strongly agree" with this view.

Long-distance caregiving can be emotionally draining

From hundreds of miles away, Weakley and her family members took turns managing a growing list of challenges for her grandmother, who would forget doctor’s appointments or social engagements; she had trouble picking out clothes or remembering to turn down the thermostat in hot weather.

They took steps to provide her with a safe environment, equipping her stovetop with an automatic turn-off function and recruiting neighbors to check in. The concerns, she said, were “definitely emotionally draining.”

Weakley worried constantly, feeling guilt and a longing to be there even though it wasn’t really feasible; she was just starting her career and her mom and aunt were still working, too. Moreover, her grandmother wasn’t ready to relinquish her autonomy.

The situation prompted Weakley, through her work at UC-Davis’ medical campus in Sacramento, to develop technology that could help long-distance caregivers better manage such situations from afar. The technology is still in the early stages.

“Communication not only with your loved one but with other family members can be a challenge,” she said. “It’s just a reality that you’re all trying to help this person you all love and who you want to have this fulfilling life that they wanted to have in their retirement.”

'You have to step into a crisis situation'

Several factors contribute to producing long-distance caregivers, including a greater number of older adults living longer with chronic illnesses or disability, and more people called on to care for ailing family members from farther away as a result of increasing social and job mobility.

“As of now, the U.S. doesn’t have an acceptable alternative to family care, so many are unexpectedly finding themselves in this role with little choice, let alone support from the health care system,” Falzarano said.

While geographically removed from the direct care environment, Falzarano said, long-distance caregivers find themselves responsible for a wide range of activities, including financial management, care coordination and providing emotional support.

Renae Perry, chief operating officer for The Senior Source, an older-adult advocacy agency serving greater Dallas, recalled stepping into such a role when her father, who lived nearly 300 miles away in Arkansas, was diagnosed with esophageal cancer in 2022.  He died just over a year ago.

“Oftentimes, it comes on really suddenly,” Perry said. “You find yourself in a situation where even with expertise and knowledge you have to step into a crisis situation where emotions are high and your loved one’s life is changing completely.”

From a distance, Perry said she tried to make sure her parents’ lawn was mowed and the bills were paid. But when her father’s situation grew dire, she found herself researching hospice agencies and conducting over-the-phone screenings from afar.

“I was fortunate because my husband was incredibly supportive and managed a lot of our household,” she said. “He made sure I had an evening to myself or a nice dinner out. Having those people around you who recognize what you’re going through and are there for you makes a huge difference.”

How technology aids long-distance caregiving

Recent and emerging technologies, such as wearable monitors and automated home assistants, are helping caregivers better manage such situations.

Telehealth opportunities, popularized during the pandemic, have been a gamechanger, Falzarano said, while electronic health portals have allowed families to access information about their loved one’s condition.

Such technologies, Falzarano said, have not only allowed long-distance caregivers to better manage care and virtually engage with care recipients but have also opened doors to connect with support groups and others in similar situations.

Zoom calls helped Perry and her sister, who lives in Chicago, virtually attend doctor’s appointments with her parents to participate in the care process.

“When you’re not there, technology allows you to in essence be in the room and hear what the doctors are saying and help your loved ones through that situation,” she said.

While her father died just over a year ago, Perry still makes time to visit her mother to make sure she has the support she needs as she learns to live on her own, getting her comfortable with video call technology so she can see her grandkids.

“Even online bill paying and being able to order groceries from afar and have them delivered is huge,” Perry said.

At UC-Davis, Weakley’s budding technology is an interactive platform, something like a virtual whiteboard, that will allow both caregiver and care recipient to keep track of activities and schedules.

“Both have different interfaces, but they sync so that a caregiver and put information into a person’s calendar or a to-do list and it shows on the receiver’s side,” she said.

The technology, called Interactive Care, or I-Care, is being tested in randomized control trials, she said.

While its aim is to help caregivers better operative remotely and to reduce crisis-driven care, Weakley said it should also help care recipients maintain independence and enhance self-efficacy. The technology can be adjusted in the event of increased cognitive decline.

While her grandmother has since moved to Northern California, where Weakley can better help manage care, it’s the long-distance caregiving experience that helped drive I-Care’s creation.

“With long-distance caregiving you’re not seeing changes in daily patterns that caregivers who live there may notice, like them going to the bathroom more frequently or missing their meds or waking up later than normal,” she said.

With long-distance caregiving continuing to fall to millions of people nationwide as the population ages and stays geographically mobile, “it’s incredibly important to design technology that can meet this changing demography and the needs of our society,” she said.

Tips for long-distance caregivers

Advocates suggest several tips for family caregivers to help ease the load:

• Maintain and grow networks of helpers, including friends, neighbors and faith community members, including an updated spreadsheet with contact information and the roles those people can play in a crisis. Utilize that network to identify contractors and handymen who can assist with plumbing, lawn services and the like for the care recipient.
• Familiarize yourself with aging advocates in the care recipient’s community. Use services such as Eldercare Locator to identify available resources such as Meals on Wheels, respite care and minor home repairs or modification. Geriatric care managers can also be hired to coordinate care and appointments in some communities.
• Look to home and community-based services (HCBS) for resources, peer support, education and training.
• Ensure you can access any necessary financial, legal and insurance details and that you clearly understand your care recipient’s wants and needs. Take steps to ward off frauds and scams from those who prey on the elderly, particularly those with cognitive decline. Check financial statements regularly and get to know who else is communicating with the individual.
• Utilize available technologies to manage things like online banking, ordering groceries, setting medication reminders and getting prescriptions refilled. Fall detection devices and video doorbells can also provide peace of mind, while video chat technologies can not only help caregivers keep in touch but participate in doctor’s appointments and other crucial encounters.
• Don’t forget to care for yourself.
• Remember that long-distance caregivers can play supporting roles for family members who do live close to or even with an ailing parents, giving them respite from their daily responsibilities.