The only people who understand what a caregiver goes through

The only people who understand what a caregiver goes through

On Thursday mornings, Julia Sadtler and Debora Dunbar connect on Zoom to talk about caring for their husband with Alzheimer’s, in hour-long conversations that are usually informative, sometimes moving, and always supportive.

Both men are patients 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, Pa., is younger, at 61, but has been providing care for much longer: Her husband, Jeffrey Draine, 60, was diagnosed with Alzheimer’s disease early in 2017. “It’s something I’ve developed expertise in,” she said.

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

“The feeling of being overwhelmed can be overwhelming,” said Ms. Sadtler, 81, a retired school admissions director. She also participates in a caregiver support group at Penn Memory, but felt drawn to the one-on-one nature of mentoring. “I knew someone who had been through this journey would be a big help to me,” she said.

“It is difficult to provide care in general, but it is even more difficult to provide care to someone with dementia,” 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; their friends no longer understand or no longer come.

It is also, she added, a financially draining and physically demanding role, often lasting for years. continue even if a family member moves in an assisted living facility or retirement home. The center Benevolent collective mentoring associates newcomers to the challenge with those who have taken the plunge.

A new study documents the extent of this burden. Using data from the Federal Longitudinal Study of Health and Retirement, a University of Michigan team compared approximately 2,400 older adults (mean age: 75) who developed dementia over the course of a two-year follow-up with 2,400 other people who did not develop them. Researchers matched the groups based on health and disability, demographic characteristics, economic status, and health care use.

“They were very similar people to begin with, so we were able to demonstrate 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. »

At first, 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, “caregiving hours for family members increased significantly,” up to 45 hours per month, Dr. Choi said. .

This figure only concerns practical help for so-called activities of daily living – bathing, dressing, going to the toilet. Taking into account tasks such as shopping, preparing meals and managing finances, unpaid caregivers spent 27 hours per month helping the control group, compared to 76 hours for the dementia group.

Only about 3 percent of both groups used a nursing facility, including rehabilitation stays, at first; over two years, more than one in five people with dementia had used or moved into a nursing facility. About 47 percent of people with dementia have had at least one hospitalization, compared to 35 percent of people without dementia.

Additionally, largely due to long-term care expenses, those who developed dementia lost more than 60% of their median wealth over a longer follow-up of eight years. “This is a devastating problem for individuals and families, but also for society in general,” said Dr. Choi.

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

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

His pitch: “Maybe I could be of help to someone who is earlier in the process.” »

Mentoring can benefit both parties, said Justin McBride, senior administrator at Duo: Partners in health and aging, which launched a similar program in Phoenix in 2016. “We hear all the time that supporting another person in need gives mentors a 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 the selection and training of mentors, has about 20 pairs enrolled.

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

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

Yet support programs aim to keep family caregivers working – a job that may simply become too demanding, especially since many (spouses, in particular) are quite elderly themselves, with their own care problems. health and limited ability to afford paid support.

“Members of government need to be informed about what is happening,” Ms Greenfield said.

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

Workplaces may also play a role, particularly for adult children who work while caring for aging parents. While employers estimate that 35 percent of their staff 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. Yet one 2021 Report for the Rosalynn Carter Institute for Caregivers found that most employers don’t offer them.

Mentoring provides a different type of support, but one that early participants say has proven particularly valuable. Mary Perkins, 76, who cares for her husband at their home in Lewes, Del., talks regularly with Susan Jewett.

Her husband, Wes Perkins, 82, suffers from vascular dementia and Alzheimer’s disease; at one point, when he had to be placed in an institution for dementia psychosis, his care became particularly difficult. “I was a mess,” Ms. Perkins said. “I needed to talk to someone who understood.”

Much more than advice on specific programs and strategies, Ms. Perkins said, she benefited from hearing Ms. Jewett’s own story. “I looked at his face on FaceTime and I saw hope,” Ms. Perkins said. “I knew she had been through hell and was surviving, even thriving. If she could survive, I could too.

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

In the future, she plans to become a mentor herself.

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Eric D. Eilerman

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