The number of people who work as unpaid caregivers rose sharply in recent years. Today, one in five Americans—about 53 million people, up from 43.5 million in 2015—is a caregiver. Unpaid caregivers, also known as family caregivers or informal caregivers, provide aid to at least one relative or friend who needs assistance due to a disease, disability or other condition. Not surprisingly, caregiver burnout—a feeling of emotional depletion—is also on the rise.
As more baby boomers age into needing additional care, many face healthcare systems they find inadequate or difficult to navigate, leading to increasing demands on caregivers and putting those people at higher risk of burnout.
If you’re a caregiver, here’s how to identify burnout—and what you can do about it.
What Is Caregiver Burnout?
Caregiver burnout is a feeling of emotional exhaustion—like you have nothing left to give. It may trigger depersonalization, or an increasing detachment from the caregiving role and, sometimes, the person you are caring for. Caregivers experiencing burnout may begin to distance themselves from the person who needs care and may even resent them.
Burnout “is the point at which caregivers are often no longer able to continue in their caring roles and care recipients are at greatest risk of institutionalization,” writes Meredith Lilly, Ph.D., the lead researcher of a small study of 23 family caregivers in British Columbia and their experiences with burden and burnout.
“‘It’s her or me: Pick one of us to put in somewhere,’” a study participant recalled saying to a health system manager, referring to institutionalization. “It was just the 24/7. I had reached the end of my tether.”
Warning Signs of Caregiver Burnout
As caregivers, “we live in this place where we just ‘go go go’ because we’ve been told the false narrative that we have to do this on our own,” says Sade Dozan, senior director of development at Caring Across Generations, a nonprofit group aimed at creating policy changes to support caregivers and aging with dignity. She cares for her mother while raising a young daughter. “We don’t even check in with ourselves to know whether or not we’re okay.”
You can be a devoted caregiver and still experience burnout or symptoms that may lead to it, such as:
- Fatigue
- A sense of hopelessness
- A lack of concern or negative feelings toward the person who needs care
- A feeling of incompetence as a caregiver
- Loneliness and/or social isolation
- Increased stress and anxiety
- Depressive symptoms
Caregiver Burnout by the Numbers
It’s tricky to estimate how many family caregivers have experienced burnout. In large studies of caregivers, researchers more often measure caregiver burden, which encompasses “the physical, emotional, social and financial problems that can be experienced by family caregivers,” according to a defining paper on the subject in Health Care for Women International. However, the concepts are related. Caregiver burden can explain the onset of caregiver burnout.
A 2020 report from the National Alliance for Caregiving and AARP, which surveyed 1,392 informal caregivers, illustrates some of the problems today’s caregivers face:
- 21% of caregivers reported being in fair or poor health, and nearly one in four said it’s difficult to take care of their own health. Overall, self-reported health of caregivers has declined since 2015.
- Four out of 10 caregivers reported being in “high-intensity situations,” supplying an average of 48.9 hours of care a week. “People have more care responsibilities than they used to, partially because family sizes are getting smaller,” says C. Grace Whiting, president of the National Alliance for Caregiving. “You don’t have as many siblings or other relatives who might be stepping in to take on care.” Families are also more spread out than in the past, leaving the person who lives closest to the relative to shoulder the care.
- 24% of caregivers are providing care for two or more people—up from 18% in 2015.
- 31% of caregivers report having difficulty coordinating care among their care recipient’s providers, and 27% say it’s difficult to get affordable services. Health care and long-term services and supports (LTSS) systems in the U.S. “can often be dispersed or fragmented, with many different settings to go to for care, services or support, which can be frustrating, stressful and costly,” the report found.
- 53% of caregivers said they had no choice but to take on the role.
Who Is More Likely to Experience Caregiver Burnout?
Anyone can experience caregiver burnout, but some caregivers may be more vulnerable due to added external pressures. At-risk populations include:
- Those caring for a spouse.
- Those caring for someone with dementia.
- Caregivers under financial stress.
- Caregivers juggling caring for an aging adult with raising a child, so-called sandwich generation caregivers.
8 Ways to Prevent Caregiver Burnout
Preventing caregiver burnout often relies on finding outside support, which can be hard for caregivers without a network of nearby friends and family. But the situation isn’t hopeless.
1. Define What’s Hardest in Your Caregiving Role
“It’s hard for caregivers to recognize sometimes what it is that’s driving the burnout,” Whiting says—either because everything feels like too much or because you’ve convinced yourself it’s selfish to complain about any of it. “Part of the challenge of burnout is that you need some way to reset so that you can step back and say, ‘What do I really need help with and how can I break this into smaller pieces?’”
She suggests talking to a friend, therapist or even a neighbor—somebody who sees your situation from the outside and can offer a different perspective. This communication can help you pinpoint sources of stress or help you realize the thing you didn’t want to admit (like you’re drained from cooking so many meals) is normal. “Having another person offer insight can be really useful because it takes off that guilt of feeling like, ‘Oh, I can’t do this, but that’s just me being selfish,’ and it puts it in a more objective light,” Whiting says.
2. Ask for Specific Help
Once you identify stressors, if there’s someone you can ask for help, be as specific as possible in doing so. For example, if shopping and cooking for a second household on top of your own is a pressure point, ask a friend if they can organize a MealTrain calendar for you.
Informal social support is more effective at diminishing burnout when “the support responds to a caregiver’s specific need,” found an analysis of caregiver burnout in Frontiers in Psychology.
3. Practice Active Coping
Active coping is the strategy of facing a problem and drawing upon your internal resources—say, your ability to change even a small part of your routine—to try to cope. Caregivers who practice this type of coping may be less prone to burnout than caregivers who state that the situation is helpless or caregivers who deny problems.
4. Repeat The Phrase, ‘It’s Us Against the Disease’
Many caregivers begin to feel frustrated when their care recipient can’t express gratitude or seems to take them for granted. Remember, they may not be acting like the person you’ve always known, depending on the effects of their condition. Remind yourself: “As much as it feels like it’s me versus them right now, it’s actually us against the disease,” Whiting says. “The disease is doing this.”
5. Seek Occupational Therapy
Occupational therapists specialize in helping injured, ill or disabled patients learn or relearn how to do the daily activities they want or like to do. Finding this type of therapist for your care recipient may be beneficial for both of you. “Occupational therapist-led intervention was found to have significant effect on reducing caregiver burden by better managing the mood and behavioural symptoms of the care-recipients,” found a study of more than 26,000 caregivers looking after relatives or friends with dementia.
6. Don’t Fall Into the Self-Care Trap
“The idea is that family caregivers don’t really have the structure and support needed to actually take a break because we are holding it all on our own, because the policies have not caught up with what we are realistically going through every day,” Dozan says. “What break can you take if there’s no respite care, if there are no family stipends to support some of the additional strains that caregiving takes on your finances? If you need to work in order to care, it’s almost impossible to say, ‘Hey, just take a break!’”
Rather, this expectation that you should be able to find time to practice self-care becomes yet another factor that can contribute to the burnout itself. “New expectations upon caregivers to engage in self‐care without adequate support serve to amplify caregivers’ experiences of burden,” according to the researchers in British Columbia, who conducted a series of focus groups with caregivers.
7. Join the Fight for Policy Change
“What we actually need to do is question and advocate, be involved on any level that we can, as we begin to prepare for the growing aging population,” says Dozan. “It can be a tweet, it can be a post, it can be a text, it can be an email,” she says. “Elevating your voice in whatever way you can is significant. Because we are significant.”
Policy changes currently being considered include the Build Back Better Plan, which proposes a $400 billion investment in home- and community-based services. “That will really help in caregiver relief, home support and in-home resources for family caregivers as they support their loved ones,” Dozan says. Caring Across Generations also advocates for individual employers to introduce policies that better support family caregivers, including allowing flexibility in when employees do their work, providing technology and support to make it easier to work from home, and not asking employees to justify the need for time off.
8. Make Use of Nonprofit- or Insurance-Funded Resources
As caregivers wait for government and employer support to catch up, there are a number of nonprofits and other organizations that provide valuable resources:
The organizations above can help caregivers locate respite and crisis care, meal services, transportation services, training and education, and more. Tailored Care, an intervention for caregivers specifically aimed at helping avoid burnout, may be covered by Medicaid, Medicare, long-term care insurance or employee benefits, Whiting says. Ask your local senior center if it’s offered there or somewhere nearby.
Sources
AARP and National Alliance for Caregiving. Caregiving in the United States 2020. AARP. 2020.
Gérain P, Zech E. Do informal caregivers experience more burnout? A meta-analytic study. Psychology, Health & Medicine. 2020.
Eckleberry-Hunt J, Kirkpatrick H, Barbera T. The Problems With Burnout Research. Academic Medicine. 2018.
Lilly MB, Robinson CA, Holtzman S, Bottorff JL. Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada. Health & Social Care in the Community. 2011.
American Medical Association. Caring for the caregiver: A guide for physicians. AMA. 2018.
Chan CY, Cheung G, Martinez-Ruiz A, et al. Caregiving burnout of community-dwelling people with dementia in Hong Kong and New Zealand: a cross-sectional study. BMC Geriatrics. 2021;21(261).
O’Neill G, Ross MM. Burden of care: an important concept for nurses. Health Care for Women International. 1991;12(1):111-21.
Gérain P, Zech E. Informal Caregiver Burnout? Development of a Theoretical Framework to Understand the Impact of Caregiving. Frontiers in Psychology. 2019.
National Alliance for Caregiving and Caring Across Generations. Burning the Candle at Both Ends: Sandwich Generation Caregiving in the U.S. 2019.
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