Caring.com/New America Media, News Feature, Paula Spencer Scott, Posted: Feb 28, 2012

Editor's Note: The following article is part of a series on family eldercare and what caregivers should know about minimizing their stress and maintaining their health. Paula Spencer Scott, a senior editor at Caring.com, wrote this article as part of a MetLife Foundation Journalists in Aging Fellowship, a project of New America Media and the Gerontological Society of America.

Part 1 of 3. Click to read Part 2 and Part 3.

SAN FRANCISCO--Everyone has a breaking point: Laura Patyk's came while caring for three live-in elderly parents (including her father-in-law with dementia and her mom with congestive heart failure) and six kids under age 14. She developed terrible insomnia. She couldn't eat. Some days, despite her many daily chores, she couldn't get out of bed. One night, symptoms landed her in the ER. Diagnosis: physically healthy but emotionally and mentally exhausted.

You won't find "caregiver stress syndrome" or "caregiver syndrome" in the DSM, the diagnostic manual that psychiatrists use to define illness. But the effects experienced by many of the 34 million unpaid family caregivers looking after America's elders are every bit as potent and debilitating as other conditions found there. And some caregivers are at higher risk than others.

Caregivers are among the three most-stressed groups in the United States, according to the 2012 Stress in America Report by the American Psychological Association. Some researchers call the unique stress experienced by family caregivers a form of post-traumatic stress syndrome. As many as 70 percent of family caregivers show signs of depression surveys show -- far higher rates than for peers who aren't in a caregiver role.

"I was trying to do it all, be everything to everybody," says Patyk, 45, who lives in Charlotte, N.C. "I was taking care of everybody but myself."

WHO’S THE MOST STRESSED?

Not all caregivers experience stress equally, notes Gail Hunt, president and CEO of the National Alliance for Caregiving (NAC), a nonprofit coalition based in Bethesda, Md.

Many family members report that stress is offset by deep personal satisfaction or by closer ties to the person in their care. For about a third of Alzheimer's caregivers for example, positives outweigh negatives, according to data from the NAC. Adult daughters often report experiencing personal growth as a result of caring for parents, says Natalie Pope, a social worker at Ohio University. They gain awareness of mortality and are motivated to plan for their own later life.

But for the majority -- and even for many of those who see silver linings, experts say -- the caregiving journey is a track littered with physical and psychological hurdles.

Consider yourself at extra risk of caregiver stress if you answer "yes" to any of the following seven questions. (And many caregivers will tick multiple boxes.)

Are you a woman?

In general, women tend to have more negative experiences as caregivers than men, says I-Fen Lin, a sociologist at Bowling Green State University, who has researched gender and relationship differences among caregivers. Daughters and wives find caregiving more stressful than do sons or husbands.

"Men tend to be more oriented to solving problems, and women focus on the relationship," she says. Women are also more socialized to nurture, which leads to their doing more stressful tasks like bathing, toileting, and dressing, while men tend to do less hands-on care, focusing on tasks like finances and providing transportation or financial support.

Are you caring for a spouse?

Spousal caregivers of both genders tend to report higher levels of stress than adult-child caregivers, Lin says.

Wives caring for their husbands seem to have the highest stress load of all, Lin says. "They tend to feel more obligated than adult children and less likely to seek help, and because they're older, their own health tends to decline."

Do you live with the person you're caring for?

A key risk factor for caregivers is how many hours you put in and how consuming the work is. The average caregiver spends 20 hours a week in the role, according to NAC. But live-in caregivers put in almost double that amount (39.3 hours). Caregivers with live-in parents also tend to be of the sandwich generation, still actively responsible for minor kids as well.

The economy isn't helping. Since the downturn, more older adults have moved in with families, and more families have moved into "the big house" to look after elders -- and the benefits of being in close quarters also bring added strains.

Does your loved one have Alzheimer's or another form of dementia?

Alzheimer's caregivers have a uniquely high stress load. They tend to experience high levels of burden and stress because of the regressive nature of dementia -- their loved one just keeps getting worse -- and because there are no really effective medical treatments. And they often keep at it for years. The longer caregivers provide care, the more they report declines in their own health.

Consider what happened to the 1,222 family caregivers (average age: 60) who were tracked for the Alzheimer's REACH-1 (Resources for Enhancing Alzheimer's Caregivers' Health) project of the National Institutes of Health, at six sites around the country. For the study, according to the researchers, “strong emphasis was placed on the inclusion of African American and Hispanic” families.

Over the 18 months of the program, caregivers’ personal use of health services increased by 25 percent and emergency room visits by caregivers doubled, as did their use of hospital-based services. Self-rated health scores declined steadily and significantly over the 18 months as well.

Does your loved one have behaviors or care needs that you find challenging to deal with?

Having to cope with problem behaviors -- incontinence, memory issues, sleep problems or wandering, just to name a few -- is one of the strongest risk factors for all caregivers, Lin's research shows. Conversely, feeling confident in your abilities is one of the most important influences on caregiver resilience (the ability to weather challenges) -- it can trump feeling overloaded and worried, according to a 2012 study of 500 caregivers in New York, Ohio and West Virginia.

Medical problems add to uncertainty and stress, too. Patients are being discharged from hospitals and rehabilitation facilities earlier and sicker than ever, placing a burden on families unfamiliar with such technical aspects of care as IVs, oxygen and more, says the NAC’s Hunt.

"Many older adults are being sent home from hospitals with devices intended for nurses or someone with training, like respirators, suction devices and catheters," Hunt says. "In one study, a caregiver reported that a nurse said, 'Now I'll show you how to do it -- and if you don't do it right, he could die.'" Talk about pressure.

Do you feel you had or have a choice about caregiving?

Forty percent of Alzheimer's caregivers in the 2011 Shriver Report, compiled with the Alzheimer's Association, said they didn't have a choice about taking on the role. Informal caregivers who felt they had no choice about the role were three times more likely to self-report stress than caregivers who had a choice about caring, found a North Carolina study in the March 2010 issue of the Centers for Disease Control and Prevention journal Preventing Chronic Disease.

"This turns out to be a big stress factor when we've asked," Hunt says of NAC's own research. "We let the caregivers determine by their own choice of definition what 'no choice' meant: 'I'm an only child, I'm the only one who lives in the area, it was always expected of me, I'd feel guilty if I didn't.' There can be a thousand different reasons someone doesn't feel they have a choice." More women than men reported they didn't have a choice about caregiving.

Lack of choice can breed emotions such as resentment, helplessness, hopelessness, and a sense of having no control over one's life.

Do you have young children?

The sandwich generation -- squeezed between slices of elders and youngsters -- is taxed by a double burden of responsibility. "Adult children are generally more likely to be overwhelmed at first, because it's the first time they're experiencing role reversal with their parents and they haven't yet accumulated a lot of caregiving experience," Lin says.

Although there hasn't been a lot of research done yet on the stress of a learning curve for caring, she adds, it stands to reason that unfamiliarity makes things more difficult. And that's doubly difficult when it comes at the same time you're on a parenting learning curve as your children go through new stages.
Time for self-care and time to tend to your marital relationship and outside friendships risk being squeezed out.

Then there's a huge group of people who are struggling under the stress of caregiving but don't exactly know it yet. That's because they don't identify themselves as "caregivers" in the first place. "People tend to think, 'I'm just doing what any good husband or daughter would do,'" NCA's Hunt says.

She continues, "It's not until there's a crisis that they're apt to realize that they're doing more than they expected -- and when you make that realization, it changes your relationship. He's no longer just your husband or your dad." Hunt adds that sons realize this before daughters, daughters before husbands, and wives last of all.