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.
There are now an estimated 53 million unpaid caregivers—individuals who care for their elderly, chronically ill, or disabled loved ones—across the country, according to the most recent data from AARP. That means one in five adults in the US acts as a caregiver.
With many families unable to pay for professional care, assuming the role of caregiver is often a necessity rather than a choice. “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, tells Health.
And that can be hard, which means that those who care for their parents, siblings, children, or partners might experience caregiver burnout.
A caregiver helps their loved one with daily activities like preparing meals, running errands, bathing, and performing medical tasks such as setting up tube feedings and giving medications. And as if that’s not enough, they often bear the weight of other types of stress, like having to deal with finances and manage doctor appointments for their loved one.
This collective stress is often referred to as caregiver burnout, and it’s all too common, according to Gitlin. “It’s a real phenomenon and shouldn’t be ignored,” she says. “It’s when a caregiver reaches a state of physical, emotional, and mental exhaustion due to ongoing (and in most cases extraordinary) and constant care responsibilities.”
Caregivers who reach this point may feel hopeless and have negative feelings about their situation. If it’s not addressed, it can lead to depressive symptoms, warns Gitlin.
What causes caregiver burnout?
The possibilities are wide—basically, anything you perceive as a stressor in your role as caregiver can lead to caregiver burnout, Martinique Perkins Waters, PhD, assistant professor in the Department of Behavioral Sciences at the University of West Alabama, tells Health.
The burnout could be sparked by the extra financial expenses due to the medical bills of your loved one’s care or all the factors that go into managing medical care, such as scheduling appointments, talking with insurance companies, getting to appointments, 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 the frustration of feeling like you are losing your own identity as your career, hobbies, and personal goals may be shifted or even stopped due to your caregiving role.
Caregiver burnout often develops after not getting the help you need or not having an opportunity for any respite—or time for yourself—to recover from your care responsibilities, adds Gitlin. 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 exercising.
While burnout can happen in any caregiving situation, somebody providing care for a person living with dementia may be at particular risk, Andrea Gilmore-Bykovskyi, PhD, assistant professor at the University of Wisconsin-Madison School of Nursing, tells Health. “Unfortunately, caregivers of people experiencing dementia in particular are often under-prepared and under-supported in their caregiving roles,” she says. “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.”
Some of the signs of caregiver burnout are very 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,” she says.
Other signs are less clear, as they may manifest as symptoms that look like common chronic illnesses. This may be especially true depending on race. For example, research led by Perkins Waters and published in The Journals of Gerontology found that while African American caregivers are less likely to report being burdened by their caregiving role, the group is actually more likely to have physical manifestations of their caregiving burden, such as increased blood pressure, complications with other chronic illnesses, and cardiovascular issues. “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 points out.
Symptoms of depression and anxiety are also very common. “If you are experiencing hopelessness, changes in sleep and/or eating habits, loss of interest in things you usually enjoy, lack of motivation, and feelings of overwhelm or general distress, it is possible you have reached that burnout point,” Perkins Waters says.
How can you prevent caregiver burnout?
Because its repercussions can be severe, preventing burnout is crucial. Perkins Waters’s 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,” says Gilmore-Bykovskyi. “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 is extremely important,” Perkins Waters says. “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.”
A good starting point is your local agencies that advocate for senior services. “People often think of the Department of Human Services [DHS] as mainly for child services, but there are adult service programs as well,” says Perkins Waters. The DHS 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 just go back home to rest.
There may also be non-profits or community organizations in your area that offer respite care. For instance, Alabama Lifespan Respite Resource Network offers vouchers that caregivers use to pay individuals to be with their loved ones in the home for short-term relief and 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 doctor appointments, talking with a counselor, finding a support group, hanging out with friends, making time for physical activity—in short, all the physical and mental care items we know we are supposed to do.
This is particularly important for caregivers who are parents. As Perkins Waters notes, 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,” she says. “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 highly recommends at least one consultation with a geriatric social worker who specializes in referral 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 going to be easy, but it can be easier with the right help and support in place.
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