The only people who understand what a caregiver goes through | ET REALITY


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

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

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

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

“The feeling of being overwhelmed can be overwhelming,” said Sadtler, 81, a retired school admissions director. She also participates in a Penn Memory caregiver support group, but was drawn to the individualized nature of the mentoring. “I knew that someone who had been down this path would be a big help,” she said.

“Caring for someone with dementia is difficult in general, but it’s even more so,” said Felicia Greenfield, executive director of Penn Memory. “Caregivers report high rates of anxiety and depression. They find it more difficult to take care of their own health. Things change socially; “His friends no longer understand or come.”

It is also, he added, a financially exhausting and physically demanding role, often lasting for years, continue even if a family member moves in an assisted living facility or nursing home. center Solidarity collective Mentoring unites newcomers to the challenge with those who have already walked the path.

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

“They were very similar people at the beginning of the study, so we were able to show the impact of dementia,” said HwaJung Choi, a health economist and lead author. “We were surprised by the enormous change that has occurred in two years.”

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

That figure refers only to practical help with the so-called activities of daily living: bathing, dressing, going to the bathroom. Taking into account tasks such as shopping, preparing meals and managing finances, unpaid caregivers spent 27 hours helping the control group each month, compared to 76 hours for the dementia group.

Only about 3 percent of either group used a nursing facility, including rehabilitation stays, at first; Over two years, more than one in five people with dementia had used or moved to a nursing facility. About 47 percent of people with dementia had at least one hospital stay, compared to 35 percent of those without dementia.

Furthermore, largely due to the expense of long-term care, those who had developed dementia lost more than 60 percent of their average wealth over a longer follow-up of eight years. “It is a devastating problem for individuals and families, and also for society at large,” Dr. Choi said.

None of that will surprise families who care for people with dementia.

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

His speech: “Perhaps it could be useful for someone who is at an earlier stage in the process.”

Mentoring can benefit both parties, said Justin McBride, senior administrator for Duo: Partners in health and aging, which started 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 these volunteer programs could make them replicable in many places. However, they operate on a small scale. Duet’s program, which like Penn’s involves selecting and training mentors, has about 20 couples enrolled.

It requires a six-month commitment, but most mentoring relationships last one or two years. Penn’s new Caring Collective, which requires a three-month commitment, has signed up 20 mentors and 40 mentees.

Larger organizations such as Alzheimer’s Association We also work to support patients and carers with dementia. It’s free 24/7 Helpline responded to 215,000 contacts in fiscal year 2023, and its online community called ALZConnected It has around 10,000 active members. Performs more than 27,000 caregiver support groups nationally.

Still, support programs aim to keep family caregivers at work, a job that can simply become too demanding, especially since many (spouses, in particular) are quite elderly, with their own health problems and a limited capacity. limited to pay paid help.

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

A new federal initiative is on the horizon. Medicare plans to fund an eight-year plan model program called GUIA, 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 work while also caring for aging parents. While employers estimate that 35 percent of their workforce are caregivers, the actual proportion is 56 percent, according to a recent study. Bank of America Report.

These workers need policies such as leave, flexible hours, and counseling. However, a 2021 report for the Rosalynn Carter Institute for Caregivers found that most employers didn’t offer them.

Mentoring provides a different type of support, but one that early participants say has proven exceptionally valuable. Mary Perkins, 76, who cares for her husband at her home in Lewes, Delaware, has been speaking periodically with Susan Jewett.

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

Even more than advice on specific programs and strategies, Perkins said, he benefited from hearing Jewett’s own story. “I looked at her face on FaceTime and saw hope,” Perkins said. “I knew she had been through hell and that she was surviving, even thriving. If she could get through it, so could I.”

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

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

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