Caregiver Stress Syndrome: Who's Most Stressed?

Find out if you're in one of seven groups that should pay extra-special attention to self-care and reaching out for help.

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 who are looking after America's elderly 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 country, 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 posttraumatic 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, North Carolina. "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 in Bethesda, Maryland.

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 diverse 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 6 sites around the country. Over the 18 months of the program, their personal use of health services increased by 25 percent; 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, Hunt says. "Many older adults are being sent home from hospitals with devices intended for nurses or someone with training, like respirators, suction devices, and catheters," she 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 CDC 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,'" NAC's Hunt says. "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." Sons realize this before daughters, daughters before husbands, and wives last of all, she says.

Paula Spencer Scott 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.

5 months ago, said...

I find it interesting that at the point of absolute burnout and being beyond stress (my sig other who I live with has ALS for almost 30 years, is vented, a full quad, can't talk and must always have someone with him, also has terminal cancer. I am his primary caregiver) that when you ask for help you only get a couple of things. 1) Here's what you need to do, blah blah blah 2) dump the responsibility on someone else, also called put him in a home of some sort (this truly is NOT a solution because his flat-line needs outweigh any homes ability to care for him and most won't do it 3) just hang in there...I am here to say all three choices are garbage and not what you want to hear. What you want to hear is someone to say, "How can I be of assistance?" "How can I help ease your load?" "Give me a task that I can do that would make your day easier!" Something you NEVER, EVER, EVER HEAR. If you hear me, and I am asking for help the by GOD offer help and not some empty words of useless empty encouragement.

8 months ago, said...

Is there a diagnostic code for a professional caregiver, such as a staffer caring for the MRDD in a group home?

over 1 year ago, said...

I live and take care of my mom and dad. I'm 53 years old and feel stressed and overwhelmed. I'm an RN and about a year ago I was attacked by a patient. Which left me with a herniated disk in my neck and back. My moms always giving me the guilt trip by sating, " you said you would take care of us." She has extra money to pay for extra help, but refuses. Acts like she doesn't have no money. What should I do? I'm just so stressed out.

about 2 years ago, said...

With the questions on gender and children, I get the sense that it means women versus men in married couples who are caretakers together, and young children among those who have children. As a 34-year old single man who took care first of my mother until her death after her heart problems surfaced and is now taking care alone of my crippled father (who turns 80 next month, doesn't drive, and has decided that returning to alcoholism is a good hobby), I don't even know how to score things. The irony is that, as a guy with nasty fibromyalgia & neuropathy, I should probably have a caretaker of my own, but it was decided by my family that I was the single one, so I got drafted when both parents took ill -- therefore, back to the hometown where I had to give up my field of study and start over with barely-minimum wage part-time labor to support myself and scrape by basic medical insurance for my own medication, I went! The actually worst thing is the creeping realization that, as I spend the whole of my youth taking care of the parents who made my childhood hell, I won't actually have anyone to do the same for me as I age (my brothers are married but opted to not have kids, despite their high incomes -- I'll end up in a forgotten corner of the local Catholic charity home more than likely, if the situation with my parents is any indication)...

over 2 years ago, said...

I answered this question a year ago & altho I was 5 for 7 (no kids but didn't think about not having a choice--see my comment below) then, I'm pretty much 6 for 7 now. I have been feeling as if I don't have a choice about what I do for my husband vs. what his professional caregiver does for him. For a long time he was able to do pretty much all his daily routines, e.g. dressing, eating, & so on and always knew me and where he was and would ride in the car & give accurate directions to everyplace, no language problems, but in the last year especially the last 6 months he has declined a lot. The general pattern was: when he was terribly sick we had 2 caregivers & they did everything for him, he couldn't walk, talk in any intelligible way, even stand, was incontinent, they literally slept in our bedroom so as to catch him & keep him from falling when he tried to get up to pee (couldn't learn to use a urinal in the bed even if somebody held it for him), change his diaper & bed when necessary, clean him up if he had a bm in his pants at home or if we were out somewhere, etc. But he gradually got better, threw them out of the bedroom, learned to take his own shower, went back to bike riding, even driving until we stopped it--I thought this is my miracle husband! He will be the one who recovers! It was all a mistake! But recently he's increasingly shadowing, more persistent with repeated questions, more &more in need of minute directions, & I kept doing what I'd been doing but it's increased to the point where I'm starting to dread it. He needs so much! I didn't think I'd ever consider placing him but it has started to seem like a really good idea--I just can't be with him every minute & be both a wife/companion and a physical & dementia caregiver & think up stuff for him to do--but I'm also thinking wait a minute, he likes being at home & I can afford to pay for help--I'm going to "convert" our caregiver back into a caregiver. I worried he (caregiver a man) wouldn't want to do it or would think it better for my husband if I did it--one of the things he's done, and rather well, is to try to preserve my husband's feeling of independence, and let him do whatever he can & just keep him safe, & the cg helps ME with laundry, shopping, cleaning, &c as well as driving & so on--he's said "anything I do to help you helps CJ". I floated the idea w/the caregiver this morning, thinking he'd argue with me (CJ says he's a know-it-all and I think he's correct--but CJ & I are both know-it-alls so that's why it bothers us haha), but he said "I just want to do what you want me to do!" Now the only thing is to figure out exactly what that is--and then to implement it, given that CJ rejects almost ALL help from him with personal stuff. And our caregiver can't bash him over the head & drag him in the shower by the ponytail--and most of the personal care is either done by me or cajoled by me now--he'll take a shower if I want him to but won't stand it from the caregiver. But--I NEED this, and if I placed him, well, that's the stuff they'd do for him (in any place I'd be willing to put him, that is!) Maybe I'll give my doctor this article & ask her what I should do & see what she says. I met her through a lecture she gave on "caring for the caregiver" and she is a geriatrician--I just haven't had time to take MYSELF to her because I've been so busy taking CJ to her...

over 2 years ago, said...

Very useful information and well written/explained. Sometimes it's just too late that you realize you've become a caregiver. When you reach your breaking point, then that's only the time you start taking a hard look at yourself. You are just stressed and irritable all day and you don't even know what's causing it, you just feel tired all the time. By being able to detect signs around you and taking an objective look at your situation, I think you can deal with caregiver stress more promptly/properly before it's too late. Thanks for writing about this topic. iWilliams

almost 4 years ago, said...

I'm 5 for 7--no kids and I of course "have a choice", but have been married to DH for 35 yrs and can't imagine not caring for him. I was struck by the last paragraph of the article regarding the people who don't know they are caregivers--most notably WIVES: DH had several infections resulting in a diagnosis of vascular dementia 2-1/2 yrs ago, which made me realize that he'd been declining cognitively for about 10 years but I couldn't or wouldn't realize it, just kept taking over more & more of what he used to do. But much more recently I realized that I started being a caregiver when he started having physical problems over 20 yrs ago--a kidney cancer (removed, no recurrence, but a BIG surgery), a mysterious progressive lower body weakness which took 19 months & 22 doctors to diagnose as a spinal dural arteriovenous malformation interfering with the blood flow to his spinal cord (again, surgically corrected but with sensory alterations from the waist down), a small bowel obstruction requiring emergency surgery to remove adhesions (uneventful recovery), all between 1990 & 1993. Then a few years of relief before the spinal curvature/back pain started in 2000 or 2001, and once more an insidiously progressive gait alteration now clearly a result of his increasing dementia. So, I've really been a caregiver since 1990! Most of our 35 - year marriage...and yes. I had two severe episodes of major depressive disorder, in 2003 and 2007, didn't know why then but it's obvious now. Lots of therapy but neither I nor therapist could see his dementia...spent all our time digging around in my childhood.

over 4 years ago, said...

Dear anonymous: you did not cause this disease in your spouse, you did everything possible to find him when he got lost. You did not fail your husband. You are forgiven for being human. Do not continue to beat yourself up, for the past can not be changed, but the future is that your spouse still needs you even while at the end of their lives. They would want to take your pain away and they would want you to live a happy life not one filled with sorrow. Keep using the antidepressants. try not to dwell on the past. Sit and make a list of what you can do for your loved one now and what you need to do to plan for the next hour, the next day, the next week. I can see how deeply you love him and I know that you are very strong to get this far. You are still the rock that he needs at this time.

over 4 years ago, said...

Thanks a lot.This was helpful but unluckily I can no longer care for my husband at home because he has been in hospital for 3 weeks now and has become bedridden and is fading away fast. He used to go out walking for about 45 minutes and I had been trying to stop him from going out by himself and on the 5th of February he did'nt come back as usual and he spent the night in the cold and was found the morning and taken to hospital, but a few days later he started dederiorating. I have not stopped crying since then and now I am on antidepressants. I hope that no one has to go trough the same experience as me after failing my husband. I had been stressed that week as I was sick and I had to take care of him and do the chores as usual though I was ill with a bad cough for a week. I wish that I can be forgiven because I feel that this is the worst mistake that I did through my whole life.

over 4 years ago, said...

Might add caring for more than one individual with disabilities to this list!

over 4 years ago, said...

Hi "I failed" are you the "anonymous" poster from earlier? If so join me on Alz.connected under caregiver forum and click the link to the chat room and we can chat, if you want. Lisa

over 4 years ago, said...

To know there are others in the same boat. To know I am not all alone. It's like meeting with other parnets when my child was in school and hear them talk about the same problems and situations. Plop, Plop, Oh what a relief it is!

over 4 years ago, said...

Hello Anonymous, Thank you for sharing your caregiving challenges with our community. Please do not hesitate to seek help offline. Depression (and/or thoughts of suicide) is a serious health problem that requires attention and care from a doctor or licensed medical professional offline. This is not a problem that can be resolved in an online forum or in the comments section of articles on our website. The Alzheimer's Association 24/7 Helpline provides reliable information and support to all those who need assistance. Call us toll-free anytime day or night at 1.800.272.3900. You can learn more about the Alzheimer's Associate at You may also find help offline by calling 911 or a toll-free crisis hotline, such as 1-800-784-2433 or 1-800-273-8255."¨ "¨

over 4 years ago, said...

To anonymous: Hang in there, I know it's hard but try to forgive yourself. If you asked your husband for forgiveness that's all you can do. Try to find some sources of support, an Alzheimer's support group, an on-line blog, keep coming here, physical exercise can also be very theraputic and help you to get "out" of yourself. My mom has not wandered yet, as she isn't stable on her feet and I think also is afraid of the "people" that might be outside. I will pray for you and your husband's recovery from all this. May God give you rest.