Invisible caregivers: Millions of kids help take care of family members without help

What Kyllian Warman remembers most about her childhood is caring for her father, an alcoholic who eventually developed liver and colon cancer. She helped her mother feed him, dress him, give him medicine and clean up after him, all while also watching her younger brother.

“If I wasn’t taking care of my dad, I would support my mom, helping her do taxes, go through bills and do housework. I just thought, ‘This is what I have to do. Everybody’s got to make it out of this alive,'” says Warman, who is now 20.

Warman was just one of thousands of American children who perform such caregiving duties every day. According to the latest data available from the National Alliance for Caregiving (NAC) and the United Hospital Fund, in 2005 at least 1.3 million U.S. children ages 8 to 18 helped to care for a sick or disabled relative, with 72 percent of these caring for a parent or grandparent and 11 percent for a sibling. Read more

 

Caregiving can hurt employee health — and increase employer costs

Debbi Heffern was too busy caregiving to go for that colonoscopy.

A dietitian and lactation consultant in St. Louis, Missouri, Heffern had been a caregiver for decades; first, for her mother, who died of cancer; and then for her mother-in-law.

“My mother-in-law was determined to live on her own. I made sure we jumped through all the long-term care insurance hoops in the right order, and had to line up paid caregivers. When she took a turn for the worse or needed new equipment I had to be on top of all that. Then her identity got stolen. Untangling that was a nightmare,” Heffern says.

Sure, Heffern had recently turned 50, but she had a healthy life style, except for the stress, and who had time for a colon cancer screening? Unfortunately, she had an ugly surprise when she was tested three years later.

“I ended up with stage four colon cancer, which required multiple surgeries and 32 rounds of chemo. While my employer was very accommodating, recovering from surgeries and all that chemo meant a lot of time away from my own job. If I had gotten my screenings when they had been recommended, I’m told I might have had only stage two or three, and perhaps wouldn’t have needed two of the surgeries or so much additional follow-up chemo,” she says.

“Four in 10 adults in the U.S. are caring for an adult or child with significant health issues, up from 30 percent in 2010,” according to a recent national survey by Pew Research Center. Given our aging population, that number is almost certain to increase, with employers taking a chunk of the burden, at least financially: A 2011 Gallup study says full-time employee absenteeism due to caregiving duties costs employers some $25 billion annually.

What is less obvious is the hidden impact caregiving has on employee health. Byproducts of unrelenting stress, such as depression and poor sleep, and a lack of attention to personal health, including nutrition and exercise or — as in Heffern’s case — neglecting preventive care, take a toll. Eliza Corporation of Danvers, Mass., a leader in health engagement management, in partnership with Altarum Institute, developed the Vulnerability Index (VI) to help insurers and employers measure how life issues like caregiving, financial troubles or marital problems impact employee health. The Company says the index has three times the predictive power of self-reported health problems than traditional measures.

According to their research, these vulnerability factors make people much more susceptible to chronic conditions such as mental illness, lower back pain and diabetes. Caregiving shows a particularly strong link; caregiving employees are nearly three times more likely to be highly vulnerable to health issues than non-caregivers. The Pew study also showed that caregivers were more likely to have faced a recent health crisis than non-caregivers.

Caregiving measurably impacts employer health costs, too; according to a 2010 study of the MetLife Market Institute and the National Alliance for Caregiving, health care costs for caregivers are roughly eight percent more than non-caregiving employees, costing employers an estimated $13.4 billion per year extra.

Tracking a clear relationship can be tough, however, as employees are not likely to bring topics like caregiving — Eliza Corporation calls them “The Unmentionables” — to the fore.

Jon Seaman, Director of Caregiver Solutions at Care Innovations, an Intel-GE joint venture that develops technology for remote care, survived kidney disease and a transplant, then helped his wife care for his elderly mother-in-law through a series of health crises. In talking with him, one gets the feeling that the latter was the more stressful experience.

“I think because it was so obvious that I was ill at work, I was very up front. ‘I’ve got these things going on. Can you support me? But with caregiving, some of the details that would help explain where my time went were very private to my mother-in-law. I didn’t know what I could share. I didn’t think I could really talk about her incontinence, for example. The whole situation was so harrowing and depressing,” Seaman says.

Further, many caregivers don’t self-identify as such.

“People don’t even know they’re doing it. It’s just what they’re supposed to do as a family member. They often have no choice but to be a caregiver. We’re trying to get people to say, “It’s an important point in life to be a caregiver, but you need support,” he says.

The VI research says people are eager for help; about 80 percent of respondents are willing to accept help from their doctor or health plan on an “Unmentionable” issue like financial stress; that rate jumps to 96 percent of people wanting help from either their doctor, their health plan – or just as importantly, their employer – with their caregiving stress. Just being surveyed brings overwhelmingly positive feedback, says Alexandra Drane, Eliza Corporation’s Founder and Chief Visionary Officer.

“The reason people like it is because they know these life stresses are why they’re not feeling well, but nobody asked them these questions before,” she says.

“There is a lot of counseling for cancer patients available both through our insurance company and where I was treated. But I don’t think anybody ever asked me about the caregiving stress,” Heffern says.

Drew Holzapfel, who convened ReACT, a coalition that aims to assist both employees and caregivers, says employers rarely have processes in place to deal with the issue.

“Our data show high awareness of the caregiving responsibilities of employees by their front line manager. What is missing is the action. How do you start the conversation? The tools are not readily available to empower the front line manager,” he says.

Even those organizations that already have invested in tools like this to address caregiving and other life-context issues often have trouble gaining traction – simply because people don’t know about them.

“For the past few years, Cigna has been refocusing its business on the individual,” said Joan Kennedy, vice president for consumer health engagement for the health service company. “We have invested in resources and experts to help people with coaching services, care management programs, and employee assistance programs. The challenge is that many people just don’t realize these resources are available to them.”

Cigna has a pilot program in collaboration with Eliza, using the Vulnerability Index to reach out to individuals that might help, and then connecting them to the resources best matched to their needs, Kennedy says.

As caregiving becomes more common, managers may at least better understand its impact. For one, more executives like Seaman may themselves be caregivers.

“It really does matter if your leadership or direct management has gone through it. When I was a young manager in my early thirties, I had 29 people working for me. I was a stickler at the time for being present in the office during work hours.

“Would I have given them more schedule leniency? Would I have had a team member provide additional support to help them cover issues? I wonder if I would have reacted differently knowing what I know now,” he says.

Published on The Huffington Post

A young caregiver helps three generations

At least five days a week for the past four and a half years, 17-year-old Jimmy Braat has been traveling two miles to the home of his 73-year-old grandmother in Lake Worth, Fla. Along with his mother, Debbie, he usually stays a few hours, doing household chores, helping to change the wrappings on his grandmother’s legs that prevent swelling from lymphedema, giving her medicine.

Then, he and Debbie may take her grocery shopping. At least once a week he also accompanies her on one of her many doctor visits – to the endocrinologist, podiatrist, pulmonologist, cardiologist, or sleep specialist – lifting the wheelchair that’s too heavy for his mom to manage.

His “Grandma Del” suffers from a range of ailments that limit her mobility, including diabetes, neuropathy, and pulmonary hypertension. Jimmy’s dad passed away in 2008 from heart failure. Debbie, 52, has pulmonary hypertension and is easily winded. His family can’t afford private care, Del does not qualify for Medicaid, and Medicare covers home care only for limited situations and periods of time.

Del refuses to go to a nursing home and doesn’t want to move in with Debbie. So much of the work caring for her has fallen to Jimmy, who is an only child.

“He doesn’t mind.  He never complains,” Del says.  “I took care of him when he was a baby, and now he takes care of me.”

Jimmy is one of more than a million children providing some or all care for ill family members or special needs siblings. According to a survey by the National Alliance for Caregiving and the United Hospital Fund in 2005, at least 1.3 million children ages 8 to 18 help care for a sick or disabled relative, with 72 percent of these caring for a parent or grandparents.

A Growing Problem, Yet Largely Hidden

There are no recent national studies, though as many as several million youths could be caregivers now, says Connie Siskowski, Ph.D., president of the American Association of Caregiving Youth (AACY), an advocacy and resource organization. Demographics may be pushing more children into the role: People are living longer with chronic illness, and single-parent or multi-family households are increasingly common, as are grandparents raising grandchildren.

While adult caregiving has gotten more awareness, the issue of a child helping is less known, says Suzanne Mintz, co-founder and CEO emeritus of The National Family Caregivers Association.

Jimmy Braat

“It’s always been assumed that family cares for family, and that, of course, is true. But in the modern age when medical science performs miracles that help people live so much longer, it’s not just kids helping dad or helping grandma, it’s them actually doing medical procedures.  And it’s not just for a couple of months, it’s for years and years,” she says.

A Born Helper

Jimmy’s caregiving journey began at the age of nine, when he began helping to care for his great grandmother, who suffered from dementia. He brought her newspapers, ground her pills into applesauce, and warmed meals in the microwave. She passed away when he was 13.

“He’s always been such a sweet little boy,” says Debbie Braat. “When he was real little, around six years old, I had to have surgery on my feet — one foot one year, one foot the other year. When I had the surgery I couldn’t walk around at all, but he would get up and he would do the laundry. He couldn’t even reach the washing machine, but he would pull himself up and sit on the machine.”

Of his grandmother, of whom he has always been close, Jimmy says, “She’s a difficult person. It’s not really her illness. She’s got a one-track mind. My trick is, when me and her start to argue, I just put my headphones on.”

Still, he says, ” I had a period of time when my grandmother was in the hospital for a few months and on life support for two of those months. The hardest thing for me was seeing her on life support for the first time.”

Jimmy is about three years behind in high school, he says; according to a 2006 report sponsored by the Bill & Melinda Gates Foundation, some 22 percent of high school dropouts surveyed left to take care of a family member. Now he takes high school classes through an online course offered by Palm Beach County. He is often so tired that, he says, “I end up passing out in at least one of my classes each day.” He also suffers from depression; research suggests caregiving raises the risk for depression and anxiety in child caregivers.

When he does have free time, Jimmy joins activities like camping, cooking classes and dinners sponsored by The Caregiving Youth Project in Palm Beach County, Fla., a pilot program that offers kids ages 10 and up who help family members care instruction, tutoring, home visits and activities. Though the AACY hopes to start a national network, to date it’s the only support program of its kind.

Jimmy will care for his grandmother, he says, “Up until the point where she passes away. There’s no exit strategy. Besides, there’s no one else to do it. “

Reprinted from TEDMED.com