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10 Reasons Why Caregiving Stress Is an Epidemic

rock-288776_640(Editor’s Note: Today’s post is an updated version of a post originally published on October 21, 2015. Read our original post, 10 Reasons Caregiving Stress Is an Epidemic.)

Physicians and health care professionals provide once-in-awhile care. We provide all-the-time care. We care for a family member or friend with a chronic illness, disease, injury or frailty.

We care at night, on weekends, on holidays. We care every day. We are the health care system.

We change wound care dressings, provide personal care, perform tasks usually done by nurses, dispense medications, monitor health, organize activities, ensure our caree’s safety to the best of our abilities, manage difficult behaviors because of a caree’s disease process, prepare special meals, keep health care professionals up-to-date, research options, advocate for the best possible care, make difficult decisions, shop for the the best-priced supplies, give the rides, first notice the problems, often suggest the solutions to health care professionals and keep the faith.

And, we do our best to keep up with our careers, our families, our friends and the activities we love.

It’s stressful because so much rests on our shoulders. With an estimated 44 million* providing care for a family member in the U.S., our caregiving stress is an epidemic in our communities. Here’s 10 reasons why:

1. We do great work without receiving the reimbursement, support, help, or assistance we need.
According to AARP Public Policy Institute, the estimated economic value of our unpaid contributions was approximately $470 billion in 2013, up from an estimated $450 billion in 2009. (The math: In 2013, about 40 million family caregivers in the United States provided an estimated 37 billion hours of care to an adult with limitations in daily activities. The Public Policy Institute has not released an updated figure since 2013.)

2. We go it alone.
49% of survey respondents in our 2017 Annual Family Caregiver Survey say they receive no help from family members. 74% say they do not have a back-up or a trained back-up to provide care in their absence if they become ill, have an emergency or want to take a vacation.

3. We all feel it.
In our simple stress survey, 1,044 family caregivers rated their stress level on a scale of 1 to 5 with 5 being the most stressed. The current number is 4.14. A little over 80% of survey respondents rated their stress level as a 4 or 5.

(Join me for a live webinar on July 16 at 3 p.m. ET to learn more about our stress survey results. Can’t join us live? Still register to join us for a link to the archive.)

4. It’s constant.
46% of survey respondents in our 2017 Annual Family Caregiver Survey say they have between two and eight hours of time for themselves each week. That’s less than one hour each day of time we can call our own.

5. We can’t find what we need in our communities to help us cope.
We have no national program to help all family caregivers, regardless of their caree’s age or primary diagnosis. Most help for family caregivers today hinges on the age of caree or is specific to a disease, like Alzheimer’s. If your caree is under 60 years of age, you really can struggle to get help and support.

6. We put our wellness on hold.
Of the 1,044 family caregivers who competed our stress survey, 755 or 72% say they miss their lives. 60% of survey respondents in our 2017 Annual Family Caregiver Survey say they do not adequately take care of their physical, emotional, dental and medical needs. 63% say they they don’t because something’s gotta give and that’s what gives. “I try, but my emotional needs would be better met if I wasn’t a caregiver,” says a survey respondent. “I did hire a part-time caregiver three afternoons per week to give me a break and for now I do have health insurance, so it’s not all bad. But it’s not the ‘me’ I was and want to be.”

7. It costs businesses.
In January 2019, Joseph Fuller and Manjari Raman of Harvard Business School’s Project on Managing the Future of Work released a report called The Caring Company: How Employers Can Cut Costs And Boost Productivity By Helping Employees Manage Caregiving Needs.

Fuller and Raman, who interviewed 1,500 employees and 300 HR leaders and business owners, found that:

  • A third of employees surveyed who left a position reported taking care of an elder with daily living needs as a reason for leaving their job.
  • The most significant factors that contributed to workers quitting were: the unaffordable costs of paid help (53%); the inability of finding trustworthy and qualified paid help (44%); the inability to meet work responsibilities due to the increased caregiving responsibilities (40%).
  • Four out of 10 caregivers find themselves in high-burden “sandwich” situations, as they juggle a career, childcare and eldercare responsibilities.

According to AARP, hidden costs to employers include the estimated tab of $6.6 billion to replace employees who quit or retire early. In addition, employers may be losing an estimated $6.3 billion because of workday interruptions as employees arrive late, leave early and take time off during the day because of caregiving responsibilities.

8. We can’t get a break.
Of the 1,044 family caregivers who competed our stress survey, 63% say they don’t sleep well at night and 60% say they haven’t had a break. A survey respondent in our 2017 Annual Family Caregiver Survey wrote, “I don’t have the energy because I don’t get enough sleep. It’s hard to be a full-time teacher, mother of a child with a disability, and child of an aging parent. the only time I get anything done is when my children are asleep.”

9. We’re conflicted about how to manage caregiving within the context of our life.
63% of respondents to our Fifth Annual Survey of Working Family Caregivers say they’ve struggled with the question, Should I quit my job because of my caregiving responsibilities? We can’t be two places at the same time. When we work and provide care, we often must.

(Join me on July 9 at 3 p.m. ET for a live webinar during which I’ll share the results of our Fifth Annual Survey of Working Family Caregivers. Can’t make the live event? Still register so you receive the link to our archive.)

10. Caregiving costs us.
U.S wages lost to unpaid family care will hit $147 billion by 2050, according to recent research released by Stipica Mudrazija, a researcher at the Income and Benefits Policy Center at the Urban Institute in Washington, D.C.

We believe family caregiver stress is the epidemic in our communities. Because it’s an epidemic, we petitioned the Centers for Disease Control and Prevention in 2015 to track family caregiver stress and its source. Because that didn’t happen, we decided to track caregiving stress through our simple stress survey. Other initiatives aimed at minimizing caregiving stress include:

Resources

* According to the research release in June 2015 by National Alliance for Caregiving and AARP, an estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months.

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About Denise

I began working with family caregivers in 1990 and launched CareGiving.com in 1996 to help and support them. Through my blog, I share words of comfort and offer coping strategies and tips. I also write opinion pieces about recent research, community programs and media coverage of caregiving issues. I've written several caregiving books, including "The Caregiving Years, Six Stages to a Meaningful Journey," "Take Comfort, Reflections of Hope for Caregivers" and "After Caregiving Ends, A Guide to Beginning Again." You can purchase my books and schedule a coaching call with me in our store.

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It’s so difficult. And caregiving, no matter which way you slice it, costs so much. Either through lost wages or paying for care. As people live longer, healthcare in the home is the wave of the future, but figuring out how to help people plan and pay for it is going to be a challenge.