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.

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