Caregiver Burnout: How to Identify and Reverse Course

Haines Eason
By Haines EasonAugust 2, 2021
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Caregiver burnout is a far-too-common condition that affects millions. According to a 2020 report from AARP, over 50 million Americans now provide unpaid support to the elderly and individuals with disabilities, and many of these caregivers aren’t prepared for the strain the work will put on them.

Professional in-home caregivers typically have experience caring for seniors and receive compensation for their work. But loved ones who find themselves in the demanding role of caregiver often didn’t set out to provide long-term care, haven’t received training, and don’t have the built-in benefits of professional service like time off and pay. As a result, these volunteer caregivers experience higher levels of stress, frustration, and even depression than their professional caregiver and non-caregiver peers. In time, if caregiver stress — which can lead to caregiver burnout — isn’t dealt with, the caregiver may experience adverse health effects, including a higher mortality rate.

The good news is that there are simple, straightforward ways to prevent caregiver burnout and help reverse its effects. Read on to learn more about caregiver burnout, including its causes and treatments.

What is caregiver burnout?

Caregiver burden, caretaker burnout, caregiver burnout — all these terms reference the same thing: a state of physical, emotional, and mental exhaustion related to the prolonged, high-level stress that can accompany providing care for another person. Cleveland Clinic notes that burnout typically occurs when a caregiver has done more “than they are able, physically or financially.”

Emotional overextension and guilt can also contribute. Many caregivers find themselves burned out when they put their needs below the needs of the person they’re caring for. Guilt may cause caregivers to ask themselves difficult questions like, “How could I take a break when my loved one needs so much?” or “Should I be doing more?”

However, when we take time for ourselves, we recharge and can perform better as a caregiver.

Guilt is an especially powerful factor when a child cares for a parent, as the relationship dynamics have developed over decades and are well entrenched. Because these caregivers are at particular risk of burnout, it’s crucial that they practice self-care and set clear boundaries and objectives.

The difference between caregiver stress and caregiver burnout

Burnout is a gradual process. Early caregiver burnout symptoms are easy to brush away, but they can build unnoticed under prolonged and extreme stress until the caregiver hits a breaking point. Caregivers can become so completely overwhelmed that they can’t care for their loved one or themselves. That’s when stress evolves into burnout.

“Stress, by and large, involves too much: too many pressures that demand too much of you physically and mentally,” note HelpGuide authors Melinda Smith, Jeanne Segal, and Lawrence Robinson. “However, stressed people can still imagine that if they can just get everything under control, they’ll feel better. Burnout, on the other hand, is about not enough. Being burned out means feeling empty and mentally exhausted, devoid of motivation, and beyond caring.”

Caregiver burnout symptoms

The signs of caregiver burnout are diverse and subtle, so be deliberate when assessing your health and needs. Chief among all signs is a pervasive feeling of “drowning” from daily responsibilities.

We all experience days where we feel dogged by hopelessness or where our efforts seem futile. Maybe we feel unappreciated after putting forward a significant amount of effort — we feel angry and sad, but eventually we’re fine. For full-time family caregivers, the occasional bad day may become a long string of days. If you find yourself feeling consistently apathetic, anxious, or distressed, you may be suffering from caregiver burnout.

From chronic pain to social isolation, symptoms can affect all aspects of a caregiver’s life.

Physical symptoms

  • Pervasive physical soreness that’s hard to diagnose
  • Constant, persistent headaches
  • Reduced appetite
  • Troubled, poor sleep
  • Frequent bouts of illness
  • Diagnosis of otherwise unexpected chronic conditions, such as high blood pressure

Mental symptoms

  • Helplessness or feeling one is unable to make a change
  • Melancholy or cynicism that’s hard to dispel
  • Feeling uncoupled from one’s life or society in general
  • Consistent, high-level anxiety or “fight or flight” response

Behavioral symptoms

  • Increased use of drugs or alcohol to numb or escape
  • Heightened irritability or bouts of anger
  • Withdrawing from friends and family
  • Forgetting obligations or letting responsibilities slip

Causes of caregiver burnout

Everyone is susceptible to burnout, and work isn’t the only culprit. Lifestyle and personality play a role, too.

If you’re the type of person who does whatever it takes to get a job done — which often means blurring the line between work and private life — you may be at risk for burnout when thrust into the role of caregiver, so make sure to establish clear expectations with your loved one.

Here are some key factors causing caregiver burnout, according to Cleveland Clinic:

  • Role confusion. Many caregivers don’t seek out the role and may be unexpectedly forced into the work. These caregivers are often the spouse, child, or friend of the person in need of care. The resulting confusion between personal and professional roles can lead to friction and stress.
  • Unrealistic expectations. Most caregivers take on the work with the hope that their efforts will play a direct part in their loved one’s recovery. However, some patients face progressive, terminal diseases or conditions. This is especially common for caretakers of older adults who have dementia.
  • Lack of control. Whether in work or private life, lack of control is a stressor that can quickly lead to apathy and disengagement. Many caregivers lack the resources they feel are necessary to put their loved one at ease or restore them to full health.
  • Unreasonable demands. On top of a loved one’s demands, caregivers often expect too much of themselves, which creates potentially impossible standards. When the bond between the loved one and caregiver is close, the caregiver may feel that providing care is their sole responsibility, and this can quickly lead to feeling overwhelmed.

In the medical terminology: Caregiver role strain

Caregiver burnout, termed caregiver role strain in the medical field, is a serious enough phenomenon that it was accepted as a medical diagnosis in 1992 by NANDA International, a professional nursing organization focused on standardizing nursing terminology. NANDA identified a need for the term because nurses are uniquely positioned to “play a significant part in reducing the role strain caregivers feel or preventing its occurrence.” NANDA writers note caregiver role strain “can be measured and identified by nurses. It can be predicted, and interventions can be instituted to diminish its effects or decrease the likelihood of its onset.”

Caregiver burnout when a loved one has dementia

Caring for a loved one with dementia comes with unique challenges. More than 16 million Americans — just over 25% of family caregivers — provide care for a relative or friend who has dementia, making them a minority even within the caregiving community. These caregivers report even more mental and physical health problems, higher levels of strain, and deepened symptoms of caregiver burnout, according to a study published in The Gerontologist.

This heightened strain may be due to the fact that dementia caregivers generally provide greater assistance with activities of daily living and devote more time each day to caring for their loved one than non-dementia caregivers do. It follows that this additional time and responsibility contribute to more rapid caregiver burnout.

If you’re caring for a family member with dementia, be sure to monitor signs of caregiver burnout and consider the accompanying health risks to maintain your own well-being.

Additional signs of dementia caregiver burnout

On average, caregivers supporting a loved one with dementia provide care for four years or more, significantly longer than the typical time commitment for caregivers of relatives with other age-related health conditions. Since dementia is progressive, meaning it worsens over time, caregivers often have to learn to cope with changing behaviors and symptoms as their family member ages. Responsibilities may compound, forcing caregivers to adjust to increasingly difficult situations.

Compared to non-dementia caregivers, dementia caregivers report lower levels of well-being along with more stress, anxiety, and depression, according to a study conducted by the University College of London.

Behaviors unique to older adults with dementia may contribute to these statistics, including:

Aggression. Confusion and disorientation may lead to aggressive behaviors — like lashing out or yelling — in people with dementia. It can be difficult to spend time in public with a loved one experiencing dementia aggression, and this difficulty can result in fewer outings and increased caregiver isolation.

Elopement.Wandering — also called elopement — is a common risk for people with dementia. Overstimulation, discomfort, or the perceived need to find someone or something can cause seniors to leave safe spaces, which leads to falls, injuries, and exposure to the elements. Constant vigilance may increase anxiety in dementia caregivers.

Significant personality changes. In the late stages of dementia, seniors often undergo changes in personality or behvior. A formerly loving relative may become cruel, accusatory, or verbally abusive. These unexpected behaviors can make family members feel as if they’re caring for a stranger, leading to rapid caregiver burnout.

Inability to communicate. People with dementia may become nonverbal or unable to recognize their family caregivers. Aging loved ones experiencing cognitive decline could ask why the relative who acts as their primary caregiver is never there, or they may believe that their family members have abandoned them. This lack of recognition can become an emotionally overwhelming caregiver burden.

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How to prevent and treat caregiver burnout

Acknowledging the symptoms of burnout is the first step to healing.

The good news is that burnout treatment and prevention require only the establishment — or resumption — of healthy life habits and clear boundaries. Remember: You are not alone, and there are numerous organizations and resources available to you.

First, reduce your stress

Consider mindfulness. When you’re burned out, meditating might seem like the last thing you want to do. However, numerous studies have shown mindfulness is an effective, noninvasive way to regulate mood quickly, and its extra health benefits are powerful.

Set clear boundaries and be honest with yourself. Sometimes, caring for someone means telling them you can’t. Or, maybe you’re able to provide care but have outside obligations that can’t be put down. Consider formalizing your caregiving arrangement. When we accept the role of caregiver, we naturally want to give it everything we have, but if we do that, we have nothing left for ourselves.

Attempt to resolve family disputes. Perhaps siblings or other close parties aren’t helping as much as they could, and too much of the care burden rests on you. These conversations can be difficult, but braving them can mean securing more help and offloading some of the stress.

Prepareby reviewing expert tips to help support your loved one living at home with dementia. There’s always a new idea that might provide a solution to a challenge you’re facing.

Find support with other caregivers. Even your best friends and closest family members may not understand what you go through as a caregiver. But your fellow caregivers do. A support group is a great way to connect quickly with like-minded people. AgingCare also hosts robust caregiver forums.

If self-care is not enough, consider outside help

Consider outside support throughrespite care, a part-time care model that  may provide the break you need to continue being your best caregiver self.

Consider some home-health help. Are you taking an all-or-nothing approach to caring for your loved one? Perhaps some of the duties — like assistance with toileting and bathing — are too much for you physically, but meal preparation, socializing with your loved one, and other lighter duties are engaging and enable bonding. Hiring some home-health help may reduce your burden while enabling you to continue caring for your loved one.

A step further from respite care is memory care. If your loved one has dementia or a related condition or is beginning to show signs, your burden is particularly complex and heavy. Memory care offers an environment and makes use of resources designed specifically for seniors suffering from dementia and related conditions. See if it’s time to explore memory care by answering these 13 questions.

Consider talking with one of our Senior Living Advisors. They’re experts in the care options available in your area, and their services are free to you.

Sources

AARP. “Caregiving in the U.S.”

Cleveland Clinic. “Caregiver Burnout.”

Family Caregiver Alliance. “Caregiver Health: A Population at Risk.”

The Gerontologist. “Prevalence and Impact of Caregiving: A Detailed Comparison Between Dementia and Nondementia Caregivers.”

HelpGuide. “Burnout Prevention and Treatment.”

International Journal of Nursing Terminologies and Classifications. “New Diagnosis: Caregiver Role Strain.”

Journal of the American Medical Association. “Caregiving Burden, Stress, and Health Effects Among Family Caregivers of Adult Cancer Patients.”

Mayo Clinic. “Caregiver Stress: Tips for taking care of yourself.”

Minority Nurse. “Managing Caregiver Burden.”

Science Direct. “Caregiver Burden.”

Haines Eason
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Haines Eason

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