What Is Caregiver Burnout—And How Can You Prevent It?

According to Rosalynn Carter, former first lady of the US, there are only four kinds of people in the world: "those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers." As a decades-long champion for the rights of US caregivers, Carter knows what she is talking about.

Caregivers help with daily activities such as preparing meals, running errands, bathing, and performing medical tasks such as giving medications. They also often bear the weight of other types of stress, like having to deal with finances and managing medical appointments.

With many families unable to pay for professional care, assuming the role of caregiver is often a necessity rather than a choice. There were an estimated 53 million unpaid caregivers, about one in five adults, across the US in 2020, according to data from AARP.

"Families are expected to provide extraordinary care to people with serious illnesses—in most cases without access to disease education, an assessment of their own needs and abilities, [and] the skills to manage complex medical regimes or challenging behaviors and functional declines associated with, for instance, a person living with dementia," Laura N. Gitlin, PhD, an applied research sociologist and dean of the College of Nursing and Health Professions at Drexel University in Philadelphia, told Health.

Over time, the ongoing and constant responsibilities of caregiving can lead to a state of physical, emotional, and mental exhaustion, what's known as caregiver burnout. Caregivers who reach this point may feel hopeless and have negative feelings about their situation. If it's not addressed, burnout can lead to depressive symptoms, Gitlin cautioned.

What Causes Caregiver Burnout?

Anything you perceive as a stressor in your role as a caregiver can lead to caregiver burnout, Martinique Perkins Waters, PhD, assistant professor in the Department of Behavioral Sciences at the University of West Alabama, told Health.

The burnout could be sparked by extra financial expenses of your loved one's medical bills or the factors that go into managing medical care, such as scheduling and getting to appointments, talking with insurance companies, refilling prescriptions, and advocating to see specialists. The burnout could be triggered by the emotional toll of watching someone you love in pain and needing to provide constant support to them. Or, maybe the burnout stems from feeling your identity, career, or goals shift due to your caregiving role.

Caregiver burnout often develops after not getting the help you need or not having the opportunity to recover from your care responsibilities, Gitlin said. Being a caregiver for a loved one can make it difficult to switch "off" from your role, making it hard to find time for sufficient sleep and positive lifestyle behaviors like exercise.

While burnout can happen in any caregiving situation, somebody providing care for a person living with dementia—symptoms that disrupt a person's thinking abilities—may be at particular risk, Andrea Gilmore-Bykovskyi, PhD, RN, assistant professor at the University of Wisconsin-Madison School of Nursing, told Health.

"Unfortunately, caregivers of people experiencing dementia, in particular, are often under-prepared and under-supported in their caregiving roles," Gilmore-Bykovskyi said. "Knowing when, where, and how to seek help can be overwhelming, which can further compound the strain caregivers may be experiencing. It is often more challenging later in the disease course, when the needs of the person with dementia may be more challenging to meet."

What Are the Signs and Symptoms of Caregiver Burnout?

Some of the signs of caregiver burnout are clear, according to Perkins Waters. "Frequent expressions of anger, sadness, and frustration are big red flags, especially when you don't usually react in this manner," Perkins Waters said. Symptoms of depression and anxiety are also very common.

According to the US Office on Women's Health (OWH), feeling overwhelmed or distressed are common symptoms of caregiver burnout. You may also feel worried, sad, alone, angry, tired, or isolated. Other common symptoms of caregiver burnout include:

• Changes in sleep—sleeping too much or too little
• Changes in eating habits
• Gaining or losing weight without trying
• Losing interest in things you usually enjoy
• Lack of motivation
• Frequent headaches or body aches

Sometimes signs of caregiver burnout may look like symptoms of common chronic illnesses. This may be especially true depending on race. For example, research led by Perkins Waters published in The Journals of Gerontology found that, while African American caregivers are less likely to report being burdened by their caregiving role, they are more likely to experience physical symptoms of burnout, such as increased blood pressure, heart problems, and complications with preexisting health conditions they may have.

"We also know that these issues occur more frequently in the African American population in general so it can get overlooked as a sign of caregiver burnout," Perkins Waters pointed out.

How Can You Prevent Caregiver Burnout?

Because its repercussions can be severe, preventing burnout is crucial. Perkins Waters' research found that caregivers who felt that they were under a lot of strain had poorer health outcomes compared to caregivers who felt little or no strain.

"A major contributor to caregiver strain, and ultimately burnout, is the lack of easily accessible systems and resources that support caregivers in these roles," Gilmore-Bykovskyi said. "For these reasons, it is really important for caregivers to seek support early and often, and even before they feel they need them—so they get help long before the point of burnout."

This might mean joining a support group, creating a schedule to give you time to yourself every day, seeking professional help from a counselor, or simply taking another person up on their offer of help. If you have a solid support network and regular breaks from your caregiving responsibilities, you can reduce your risk of getting to the point of complete burnout.

"Respite [time for yourself] is extremely important," Perkins Waters said. "If possible, ask members of your family to assist with care. Even if they're not close enough for day-to-day respite, they can make phone calls for services, search the internet for resources, or even have food delivered to the house so you have one less thing on your to-do list. If you attend a faith-based organization, more than likely there are members or a ministry that can stay with your loved one briefly, help with transportation, assist with groceries, or just come by to talk."

Where Can You Get Help?

A good starting point is your local agencies that advocate for senior services. "People often think of the [Department of Health and Human Services (HHS)] as mainly for child services, but there are adult service programs as well," Perkins Waters said. HHS may be able to connect you with resources like adult day care programs, which support your loved one for a short time while you run errands or rest.

There may also be nonprofits or community organizations in your area that offer respite care. For instance, Alabama Lifespan Respite Resource Network offers vouchers that caregivers can use to pay individuals to be at home with their loved ones for short-term relief. The organization also provides resources for mental health counseling and caregiver support groups.

Even if you get this help for your caregiver duties, you still must make it a point to care for yourself, according to Perkins Waters. This means going to routine medical appointments, talking with a counselor, finding a support group, hanging out with friends, and making time for physical activity.

This is particularly important for caregivers who are parents. As Perkins Waters noted, a lot of caregivers juggle raising children and caring for aging parents. "You may go into the caregiver role expecting ease, as you have raised young children," Perkins Waters said. "But it is an entirely different situation when you are older yourself and you are caring for an adult who likely raised you. There is more history and experience on both sides; this is a unique journey and taking care of your health will help better prepare you for it."

If you have the means to pay for it, Gitlin recommended at least one consultation with a geriatric social worker who specializes in referrals and linkages. The social worker can help you assess your caregiving situation, deal with stressors, and come up with a plan. Being a caregiver is never easy, but it can be manageable with the right help and support.