The Only People Who Understand What a Caregiver Goes Through

On Thursday mornings, Julia Sadtler and Debora Dunbar log onto Zoom to talk about caring for their husbands with Alzheimer’s disease, in hourlong conversations that are usually informative, sometimes emotional and always supportive.

Both men are patients at Penn Memory Center in Philadelphia, which began this mentorship program for caregivers in September. By design, the two women are at different stages.

Dr. Dunbar, a nurse-practitioner who lives in Wallingford, Pa., is younger, at 61, but has coped with caregiving for far longer: Her husband, Jeffrey Draine, 60, was diagnosed with early-onset Alzheimer’s in 2017. “It’s something I’ve developed expertise in,” she said.

Philip Sadtler, 80, received his diagnosis just two years ago, so his wife has long lists of questions about what lies ahead. How will she know when Philip should stop driving? How can she handle the guilt of leaving him at home sometimes while she volunteers or sees friends? How long can the couple, who live in Berwyn, Pa., continue traveling to California to visit their daughter and her family?

“The sense of being overwhelmed can be crushing,” said Ms. Sadtler, 81, a retired school admissions director. She also participates in a Penn Memory caregiver support group, but felt drawn to the mentorship’s one-on-one nature. “I knew that someone who’s been down this road would be a great help,” she said.

“Caregiving in general is hard, but caregiving for a person with dementia is harder,” said Felicia Greenfield, Penn Memory’s executive director. “Caregivers report high rates of anxiety and depression. They have a harder time attending to their own health. Things change socially; their friends don’t understand or come around anymore.”

It’s also, she added, a financially draining and physically demanding role, often lasting for years, continuing even if a family member moves into assisted living or a nursing home. The center’s Caring Collective mentorship matches newcomers to the challenge with those who have walked the walk.

A new study documents the extent of that burden. Using data from the longitudinal federal Health and Retirement Study, a University of Michigan team compared about 2,400 older adults (average age: 75) who developed dementia during a two-year follow-up with 2,400 others who did not. The researchers matched the groups for health and disability, demographic characteristics, economic status and health care use.

“They were very similar people at baseline, so we could demonstrate the impact of dementia,” said HwaJung Choi, a health economist and the lead author. “We were surprised at the huge change over two years.”

At the start, people in both groups received about 12 hours of unpaid care a month from family and friends. After two years, the control group showed little change, but in the group with dementia, “the care hours for family members increased dramatically,” to 45 hours a month, Dr. Choi said.

That figure refers only to hands-on help with so-called activities of daily living — bathing, dressing, using the toilet. Taking into account tasks such as shopping, meal preparation and handling finances, unpaid caregivers spent 27 hours assisting the control group each month, compared with 76 hours for the group with dementia.

Only about 3 percent of either group used a nursing facility, including rehab stays, at the start; over two years, more than one in five of those with dementia had used or moved into a nursing facility. About 47 percent of the people with dementia had at least one hospital stay, versus 35 percent of those without dementia.

Moreover, largely because of the expense of long-term care, those who had developed dementia lost more than 60 percent of their median wealth over a longer eight-year follow-up. “It’s a devastating problem for individuals and families, and also for society in general,” Dr. Choi said.

None of that will come as a surprise to families caring for people with dementia.

“I remembered how absolutely terrified I was at the beginning,” said Susan Jewett, 76, who first proposed the mentoring idea to Penn Memory after her husband’s death in 2020.

Her pitch: “Maybe I could be useful to someone who is earlier in the process.”

Mentoring can benefit both parties, said Justin McBride, a senior administrator at Duet: Partners in Health and Aging, which began a similar program in Phoenix in 2016. “We hear all the time that supporting another person in need gives mentors a sense of purpose,” he said. “It helps them make sense of their own journey.”

The relatively low cost of such volunteer programs could make them replicable in many locations. They operate on a small scale, however. Duet’s program, which like Penn’s involves screening and training mentors, has about 20 pairs enrolled.

It requires a six-month commitment, but most mentoring relationships last a year or two. Penn’s newer Caring Collective, requiring a three-month commitment, has enrolled 20 mentors and 40 mentees.

Larger organizations like the Alzheimer’s Association also work to support dementia patients and caregivers. Its free 24/7 helpline responded to 215,000 contacts in the 2023 fiscal year, and its online community called ALZConnected has about 10,000 active members. It conducts more than 27,000 caregiver support groups nationally.

Still, support programs aim to keep family caregivers on the job — a job that may simply grow too demanding, especially since many (spouses, in particular) are themselves quite old, with their own health problems and limited ability to afford paid help.

“People in government need to hear about what’s going on,” Ms. Greenfield said.

A new federal initiative is on the horizon. Medicare plans to fund an eight-year model program called GUIDE, to provide care coordination, education and support; it will include payment for respite services, allowing caregivers a break from their responsibilities.

Workplaces can also play a role, especially for adult children who are working while also caring for aging parents. While employers estimate that 35 percent of their workforces are caregivers, the actual proportion is 56 percent, according to a recent Bank of America report.

Those workers need policies like leaves of absence, flexible scheduling and counseling. Yet a 2021 report for the Rosalynn Carter Institute for Caregivers found that most employers didn’t offer them.

Mentoring provides a different kind of support, but one that early participants say has proved uniquely valuable. Mary Perkins, 76, who cares for her husband at their home in Lewes, Del., has been talking regularly with Susan Jewett.

Her husband, Wes Perkins, 82, has vascular dementia and Alzheimer’s; at one point, when he required institutionalization for dementia psychosis, his care became particularly difficult. “I was a mess,” Ms. Perkins said. “I needed to talk with someone who understood.”

Even more than advice on specific programs and strategies, Ms. Perkins said, she benefited from hearing Ms. Jewett’s own story. “I looked at her face on FaceTime, and I saw hope,” Ms. Perkins said. “I knew she’d gone through hell and she was surviving, even thriving. If she could live through it, I could, too.”

Mr. Perkins is back at home now, taking medication to control his symptoms and enrolled in a local PACE program, a comprehensive state and federal effort that provides some paid home care. The couple can take walks together, go out for breakfast, drive to the beach. “We still have good times,” Ms. Perkins said. “It’s better than I ever thought it could be.”

At some later date, she plans to become a mentor herself.