Why Family Caregivers Are Burning Out Right Now
Managing medicines. Prepping special meals. Dressing and bathing. When you’re providing direct care to a loved one, whether that person is an ageing parent, a spouse with a chronic illness, or a child with a disability, the obligations—and stress—can pile up quickly.
You’re committed to supporting your loved one as best you can, but being someone’s rock day in and day out isn’t easy. As a result, you may end up feeling strained. Recent findings suggest that a growing number of caregivers are going on to experience feelings such as hopelessness, exhaustion, and a desire to withdraw from normal activities, a state known as caregiver burnout.
Burnout can negatively affect your mental and physical health, which in turn creates challenges in looking after someone else. That’s why it’s crucial to know that your wellbeing is important, too. Keep reading for expert advice on understanding and managing caregiver burnout, including symptoms, causes, coping strategies, and helpful resources for further support.
What is caregiver burnout?
In a nutshell, caregiver burnout (also known as caregiver fatigue) is a condition of mental, physical, and emotional exhaustion that arises from the responsibilities of care. While caregiving can be a rewarding act of love, in many cases it’s also highly stressful, says licensed social worker Christina Irving, clinical services director for the Family Caregiver Alliance, an advocacy group in San Francisco. Caring for a loved one isn’t like working as a nurse or a doctor, she notes. Because your role is tied up in a personal relationship, you can’t easily “clock out” at the end of the day. Most caregivers aren’t compensated for their work, either. In fact, many are forced to shoulder major out-of-pocket expenses.
What are the symptoms of caregiver burnout?
Burnout is marked by a shift in mindset. You may feel like you can’t face your caregiving responsibilities anymore, or that you don’t have the physical energy needed to meet the daily demands, says John Schall, CEO of the Caregiver Action Network, a Washington, D.C.-based nonprofit that provides resources to caregivers.
Caregiver burnout affects people in different ways, but some broad patterns do exist. In many cases, symptoms may appear similar to (or occur in conjunction with) those of depression. According to the Cleveland Clinic and AARP, symptoms of caregiver burnout include:
- A sense of hopelessness or helplessness
- Emotional and physical exhaustion
- Irritable or sad moods
- Insomnia or other sleep problems
- Social withdrawal from friends, family, and loved ones
- Loss of interest in activities you used to enjoy
- Changes in your appetite or weight
- Health problems, such as getting sick more often
- Feelings of resentment or anger toward the person in your care
How common is caregiver burnout?
Family caregiving is on the rise—and so too is burnout, research suggests. A 2020 study published in The Gerontologist found that caregivers experienced a significant uptick in stress, anxiety, and sleep problems during the COVID-19 pandemic. These findings follow a comprehensive 2020 report—“Caregiving in the U.S.,” from the National Alliance for Caregiving (NAC) and AARP—which found that roughly two-thirds of caregivers viewed their roles as moderately or very stressful to begin with.
That’s a concern given that more and more people are serving as caregivers. More than one in five U.S. adults provided nonprofessional long-term care to a person with a serious or chronic condition in 2020, according to the NAC report. That number has risen 22% since 2015 due to factors such as an ageing baby boomer population, an increasing shortage of professional caregivers, and growing public awareness of what actually counts as caregiving.
To clarify that last point: If you perform any of the following tasks on behalf of someone else, you are acting as a caregiver, according to Called to Care, a program for caregivers run by Johns Hopkins Medicine:
- Driving to doctor’s appointments
- Refilling prescriptions
- Talking to doctors, nurses, and medical office managers
- Handling health insurance issues and financial concerns
- Monitoring a health condition
- Helping them get dressed, shower, or get in or out of bed
- Performing errands like grocery shopping
- Performing household duties like cleaning and meal prep
Tens of millions of Americans are caregivers. For most, it’s a tough job. “The planning, uncertainty, and worry involved in caring for someone else can take a serious mental and emotional toll,” Irving says.
Is caregiver burnout potentially harmful?
Caregiving may raise a person’s risk for developing depression and anxiety. Research suggests that 40–70% of caregivers have clinically significant symptoms of depression.
Burnout may also cause you to overlook your own health—say, by skipping doctor’s appointments or eating not-so-nutritious meals on the go. This may lead to a higher risk for illnesses such as diabetes or hypertension, Irving says. According to the Centers for Disease Control and Prevention, 41% of caregivers have two or more chronic diseases, compared with 27% of the general population.
Substance use is another potential concern. In a small Cornell University study of 44 people caring for spouses with dementia, more than a third said they used alcohol to cope with the pressures of their role. On average, respondents rated their health status as worse than the health status of their spouses.
Because caregiver burnout can affect multiple aspects of your health, Irving advises connecting with your doctor if you experience any of the signs listed above. Treatments such as talk therapy or medication may be helpful.
Below, you can find some organizations that support caregivers specifically. For additional information on finding mental health support, visit this resource guide developed by the WW Science Team. If you are concerned that you might hurt yourself or the person in your care, seek immediate assistance by dialling 911 or the 24-hour Canada Suicide Prevention Service at 833-456-4566.
What causes caregiver burnout?
Every situation is unique, but common hardships such as inadequate access to professional support services can make caregiving exceedingly difficult. The NAC report also points to racial disparities that may add to challenges faced by non-white caregivers. For example, Black caregivers spend more hours per week caregiving than their white counterparts and a greater share of their time performing medical and nursing tasks, like giving injections.
In general, risk factors for caregiver burnout include:
- Schedule strain: The average caregiver spends 24 hours a week performing the duties of their role, the NAC report found. That’s on top of any other responsibilities you may have as a parent, spouse, friend, employee, and community member. As a result, Irving explains, you may feel pulled in different directions.
- Emotional hardship: You may anguish over your loved one’s declining health, grieve for the life you used to have, and fear what the future might bring. You may also face stress over logistical concerns, like securing insurance coverage or arranging transportation to medical appointments.
- Skewed expectations: You might feel you're not doing enough if your loved one isn't actively progressing toward being happier, healthier, and more independent. For certain care recipients, such improvement may not be possible, especially if they are living with multiple conditions—something more and more caregivers are navigating these days, the NAC report noted.
- Neglect of personal needs: “When you’re a busy caregiver, you may push your own health needs to the side,” says Pnina Rothenberg, an occupational therapist at Levindale Geriatric Center and Hospital in Baltimore. Beneficial habits such as getting enough sleep and setting aside time to exercise, may fall to the bottom of your priority list.
- Shifting relationship dynamics: It can be hard to reconcile your new role as a caregiver with the relationship you once had with your loved one, whether that’s as a spouse, parent, or child.
- Lack of privacy: You may have little time or space to yourself, especially if you live with the person you’re caring for.
How can you prevent and alleviate caregiver stress and burnout?
By now it’s clear that caregiver burnout is a challenging situation. So what can you do to take care of yourself and mitigate the effects? Some strategies to consider:
- Understand what’s in store. Developing your knowledge of your loved one’s condition, needs, and long-term prognosis can help you set expectations and plan accordingly. Once you have a fuller picture, give careful consideration to what you can handle—and allow that you are only human.
- Share your experiences. It’s natural to want to look like you have everything under control, but being vulnerable doesn’t mean you’re failing. Opening up about your struggles to friends and family may help you feel emotionally supported. Such conversations may also create an opportunity to ask for help. For example, maybe you and your siblings can discuss taking turns driving your mom to appointments.
- Think beyond care support. Even if you don’t have someone to help manage hands-on caregiving tasks like feeding or refilling prescriptions, you may be able to offload other types of chores. A laundry delivery service, for example, could ease some strain by freeing up precious hours in your week.
- Take breaks when you can. Granted, what you’d really love is a three-week vacation on a tropical island. But when that’s not an option, know that even short breaks can help you manage stress. Think: popping in your earbuds and listening to a favourite song, ducking outdoors to catch a beautiful sunset, or stretching your muscles with a walk around the block. “Even if it’s a few minutes, it gives you a chance to decompress,” Rothenberg says.
- Set personal priorities. Make a list of things you need on a regular basis to feel healthy and strong—for instance, nutritious meals, daily activity, and conversations with friends. Then brainstorm ways to make those things happen in the context of your current life. Maybe it’s meal planning at the start of the week before things get hectic, or scheduling your own doctor appointments in one convenient block so you don’t have to arrange multiple days of backup care for your loved one.
- Seek out a support group. Many family caregivers find it helpful to connect with others who are going through similar experiences, Irving says. In addition to helping you feel less alone, a support group may introduce you to new strategies for balancing your responsibilities and dealing with common challenges.
Where can caregivers find support?
It can’t be emphasized enough: You shouldn’t have to figure out the nuts and bolts of caregiving all on your own. The following organizations aim to provide additional information and support.
- Carers Canada: This is a national coalition dedicated to increasing recognition and support for caregivers.
- Caregiving matters: Their goal is to offer education and support to family caregivers.
- Caregiver solutions: Canada’s trusted source for caregiving advice for those caring for seniors.
- The University of Toronto also has a directory of more national and local caregiver support organizations.
The bottom line: What should caregivers know about burnout?
Most family caregivers work hard to keep their loved ones as healthy and comfortable as possible. The pressures of this responsibility can lead to stress, anxiety, and exhaustion, especially for people who lack adequate resources and help. Recognizing the warning signs of burnout, like insomnia and feelings of hopelessness, can be helpful in safeguarding your own mental and physical health in the face of such challenges. Prioritizing self-care, delegating responsibilities when you can, and sharing your experiences with friends and or a support group may alleviate feelings of burnout and help sustain your wellbeing as you care for the person in your life.
Sharon Liao is a freelance writer and editor specializing in health, nutrition, and fitness. She lives in Redondo Beach, California.
This article was reviewed for accuracy in August 2021 by Christi Smith, MS, CSCS, associate manager for science translation at WW. The WW Science Team is a dedicated group of experts who ensure all our solutions are rooted in the best possible research