Programs seek to support family caregivers
For today, there are no doctor’s visits. No long afternoons with nothing to do. No struggles over bathing — or not.
At the National Gallery of Art in Washington, D.C., a group of older adults — some in wheelchairs, some with Alzheimer’s — and their caregivers sit in a semicircle around a haunting portrait of a woman in white.
“Take a deep breath,” said Lorena Bradford, head of accessible programs at the National Gallery, standing before “The Repentant Magdalen” by Georges de La Tour.
“Now, let your eyes wander all over the painting. Take it all in. What do you think is going on?”
“I think she looks sad,” said Marie Fanning, 75, of Alexandria, Va., an Alzheimer’s patient.
“Yes. Yes, she looks sad,” said Bradford.
“This is such a gift,” Bill Fanning, 77, Marie’s husband and caregiver, said of the outing.
Across the country, community groups, hospitals, government agencies and nonprofits are doing more to support at least some of the estimated 42 million people who are the primary caregivers of adults and children who have disabilities, are recovering from surgeries and illnesses or are coping with Alzheimer’s and other chronic diseases. The National Gallery’s program is part of the trend focusing on the health, well-being and education of caregivers.
“We know that involvement with art improves well-being. In our own research for persons with dementia, we see a reduction in apathy. For caregivers, we see less isolation and a reduction in stress,” said Carolyn Halpin-Healy, executive director of the Arts & Minds program for caregivers and patients at the Metropolitan Museum of Art in New York.
She co-founded the program with Columbia University neurologist James Noble in 2010 at the Harlem Studio Museum in New York. The Just Us program in Washington is a spinoff of that program. Other museums in New York and Dubuque, Iowa, have similar programs.
A new bipartisan law signed by President Trump in January calls for a national strategy to address the needs of caregivers, who are primarily women and provide 37 billion hours in unpaid care to relatives or close friends valued at $470 billion, according to an AARP study. The law will require the Department of Health and Human Services to set up an advisory council and develop a blueprint for government action on financial, workplace, respite care and other caregiver issues.
At the same time, 42 states have passed laws requiring hospitals and other nursing facilities to provide training for caregivers who perform medical tasks, and to record them as the “caregiver” when patients are admitted or released from hospitals or nursing facilities.
In states without that law — Alabama, Florida, Georgia, Idaho, South Carolina, South Dakota, Vermont and Wisconsin (Kansas’ law takes effect in July) — patients can be dismissed from the hospital without family members being told or briefed fully on what care the patient needs.
The CARE Act is “more than just a law,” said Elaine Ryan, AARP vice president of state advocacy and strategy. “It’s a change in the practice of health care.”
Caregivers are almost two times more likely to have emotional and physical problems, and three times more likely to have productivity problems at work, according to a 2015 study by Johns Hopkins. The more intense the care, the greater the effects, the study said.
Caregivers are “the backbone of our health system,” said Dr. Alan Stevens, a gerontologist who trains caregivers in partnership with Baylor Scott White, the largest nonprofit hospital company in Texas, and a group of aging agencies across the state.
“If caregivers go away, we have a problem. It’s important to better understand their needs — and to help them.”
Caregivers need a little fun and relaxation, said Jason Resendez, executive director of the Latinos Against Alzheimer’s Coalition. About 8 million Latinos are caregivers for their family members, and nearly 2 million are caring for family members with Alzheimer’s, he said.
For instance, in Los Angeles, Latino groups partnered on a play performed in Spanish about a son who is his mother’s caregiver. It was a comedy.
And in Chicago, the Latino Alzheimer’s and Memory Disorders Alliance holds caregiver training — and free salsa dancing classes.
“It’s not just about translation; it’s not just about handing out pamphlets,” he said.
‘If caregivers go away, we have a problem. It’s important to better understand their needs — and to help them.’ — DR. ALAN STEVENS gerontologist