What Do Family Caregivers Need? MIT Asks Them

Five years ago, John Eno, 61, worked as a psych counselor in a locked facility in Boston and loved the work. Then, his now 90-year-old mother Ann’s health started failing, so he moved in with her. When the caregiving took up more of his time, Eno had to quit his job, which saddened him. “What I did [at work] was very meaningful… I realize how much I miss it,” he said.

A few months ago, Eno’s sister located a promising caregiving assistant, a nurse experienced with tasks such as changing incontinence underwear. When Eno did that for his mother, who has dementia, it usually entailed a 20-minute argument. But when COVID-19 struck, the nurse went into quarantine, and Eno was again left to care for his mother on his own.

COVID-19 is intensifying the frustrations and pressures of family caregiving. Aside from the increased difficulties of finding professional home care help, it can be hard to explain — and re-explain — what a pandemic is to someone with dementia. “I think that’s ultimately what’s going to make me snap,” Eno said.

What MIT’s CareHive Survey Will Do

Stories like Eno’s are why MIT’s AgeLab recently launched its CareHive survey of nonprofessional caregivers, typically family members of loved ones needing assistance.

“We realized that focusing in on the older adult is not incorrect, but it is incomplete.”

CareHive researchers routinely ask their 900+ members, mostly from around the U.S., what they need and what they’re experiencing. That way, AgeLab can better create tech products, services and supports to meet the needs of the caregivers and the people they assist as well as to improve public policy. The CareHive team is comprised of engineers, psychologists, social workers, anthropologists and gerontologists.

Until now, AgeLab was all about serving the needs of older adults. Says AgeLab founder and director Joseph Coughlin, a Next Avenue Influencer in Aging: “We realized that focusing in on the older adult is not incorrect, but it is incomplete.”

While nonprofessional caregivers provide invaluable service to others — often jettisoning careers and personal desires in the process — they often haven’t been asked how they are doing.

Technology can help caregivers in many ways, sometimes by taking existing services and using them differently, Coughlin said. For example, virtual video platforms like Zoom let family members who provide caregiving from afar to check in with their parents. “When you ask your mother [on the phone] how she’s doing, there is this a long pause. She will say ‘Okay.’ And you really wish you could see her face to see whether that’s accurate or not,” Coughlin said.

CareHive looks at caregiving in areas as diverse as transportation to wound maintenance. For people providing caregiving out of their own homes, “I want to get into your living room, your kitchen, even your bathroom,” Coughlin said.

What Caregivers Don’t Talk About

Because of its deep examination of the hidden details of life, CareHive exposes obstacles that caregivers don’t necessarily think to mention.

Credit: Courtesy of Madeleine Eno

For instance, one told the MIT researchers about using a nutcracker to pry open a medicine bottle. “That is a silly problem,” Coughlin contends. Yet it’s the sort of problem that engineers and designers can solve — but don’t — because caregivers typically aren’t asked.

Lately, Eno has been considering how much longer he can keep up his mother’s care. But with the pandemic, he’s unsure if it would even be possible to move her into a nursing home if necessary.

For now, though, he talks about the poignant process of watching his mother “disappear.” She will leaf through one of her old datebooks from 1995, chock-full of meetings and events. Back then, his mother was a political activist, attending peace vigils, organizing aid to Nicaragua and helping with resettling of Rwandan refugees. For fun, she’d kayak with friends every Thursday, weather permitting.

“Now it’s down to the same twelve stories over and over again,” Eno noted. “She’s disappearing. But I’m disappearing, too.”

With CareHive, Coughlin wants to ensure that caregivers know they are not alone. “Only other caregivers can understand,” Coughlin asserted.

By Deborah Quilter

Deborah Quilter is an ergonomics expert, a certified Feldenkrais practitioner, a yoga therapist and the founder of the Balance Project at the Martha Stewart Center for Living at Mount Sinai Hospital in New York. She is also the author of Repetitive Strain Injury: A Computer User's Guide and The Repetitive Strain Injury Recovery Book.

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