Most of us have heard of caregiver burnout or are familiar with the trials and tribulations involved with providing care for an aging loved one. While we may be aware of these unique “occupational hazards,” many family caregivers feel that they are powerless to change their situations and therefore turn a blind eye to their emotional, physical and even financial difficulties. However, this denial only provides a cozy little space for burnout to take root and grow.
According to the Caregiving in the U.S. 2020 Report published by The National Alliance for Caregiving (NAC) and AARP, 36 percent of family caregivers consider their situation to be highly stressful. Furthermore, nearly half of this high-stress group (49 percent) provides more than 20 hours of care each week. Even if you believe you are on top of your loved one’s needs and your own, it is crucial for you to periodically take an objective look at your circumstances to avoid pushing your limits too far. You may be meeting many of these needs, but are you providing the best possible care? At what costs?
“Some people do not realize the extent of their stress and burnout, so they do not realize that they need to take action or look into things that can help them,” explains Barry J. Jacobs, Psy.D., clinical psychologist, family therapist and author of The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent. “This puts those caregivers at greater risk for fatigue and depression and, ultimately, for being unable to continue their caregiving duties.”
Family caregivers can help themselves by learning to be more mindful of the strain they’re under and more proactive about finding a healthy middle ground between total sacrifice and selfishness.
What Is Caregiver Burden?
Caregiver burden is unique to informal or family caregivers. This term is used to describe the cumulative physical, emotional, social and financial impact of providing care. The phenomenon was initially studied in family members caring for loved ones with Alzheimer’s disease and other forms of dementia. Over the past few decades, research has shown that certain factors increase a person’s risk for caregiver burden, including social isolation, being female, spending a higher number of hours providing care, depression, financial stress and a lack of choice in being a family caregiver.
Signs of Caregiver Burden
Jacobs considers a demoralizing sense of dread to be a telltale sign of intensifying caregiving strain and resentment.
“It is a serious issue if you are going to bed each night in anguish over the next day’s chores and waking up each morning with a feeling of heaviness and a reluctance to get going. Caregivers who are full of dread have come to hate their daily caregiving routines, even if they still love the person for whom they’re caring. Ironically, many of them rigidly resist all suggestions for altering those routines as if any change would be tantamount to giving up altogether,” Jacobs points out. “These caregivers will struggle unhappily month after month until the day that they simply can’t physically or emotionally force themselves out of bed anymore.”
Jacobs also cautions caregivers to pay attention to a new or worsening tendency to yell or experience emotional outbursts, which could indicate compassion fatigue.
“I’m not talking about the caregiver who becomes frustrated on occasion and sharply rebukes their care recipient,” he elaborates. “As I point out to many of the guilt-ridden individuals who come to me for counseling, people occasionally yell in families in which no caregiving is taking place. That is simply called normal family life. What I’m concerned about here is the caregiver who frequently loses control of their emotions and winds up saying and doing hurtful things much too often.”
Jacobs believes that both these examples are indicative of family caregivers who must immediately change their care plans to reduce their burden or even cease caregiving altogether.
“They must find alternative means for ensuring that their loved ones are well cared for,” he encourages. Resuming their duties may be a possibility at a later date, but depression and acting out, while not uncommon, point to an unsustainable care plan and an environment that is toxic to both the caregiver and care recipient.
Ignoring Burnout Comes With Consequences
High levels of caregiver burden are associated with caregivers developing their own health problems and even an increased risk of death. There are ways of reducing caregiver burden, but many are hesitant to acknowledge the pressure they are under and refuse to accept outside help. Others are well aware of the toll that providing care has taken on them but feel powerless to change their situations.
While it may be a well-worn cliché at this point, Jacobs finds that a marathon metaphor is still the most powerful way of helping caregivers realize they need to prepare themselves for the long haul.
“Caregivers, like marathon runners, must learn the lay of the land, find a sustainable pace and accept replenishment along their journey if they have any hope of gamely persevering from start to finish line,” he explains. “With this metaphor in mind, we can say that the family member who accepts this role blindly is akin to the misguided runner in Crocs and jeans with no clue about how far they have to travel. They simply are not equipped to successfully complete the race and are likely to stumble and fall within the first mile.”
Much the same can be said for caregivers who wantonly ignore signs of caregiver burden and rising stress levels.
“Even as they eye the next uphill stretch ahead of them, marathoners have to constantly scan their bodies for muscle cramps and strained ligaments that could be their undoing. This awareness of their limits is crucial. When pain becomes too sharp, they know they must throttle back on their pace. Caregivers, too, need to be on alert for physical symptoms, such as headaches and neck and back pain, and emotional symptoms, such as persistent irritability and hopelessness, either of which could undermine their capacity to give care,” urges Jacobs. “When they don’t watch for these signs and try to push through, they make themselves more, not less, likely to badly falter over the long, grinding course.”
Objectively Assessing Caregiver Burden
Because it can be so difficult for caregivers to get a clear read on their mental and physical well-being without feeling guilty or a sense of failure, Jacobs recommends a couple quick and easy caregiver burden assessment tools to help readers get started.
“The two that I most often recommend are the Zarit Burden Interview, which is available in both short and long forms, and the Caregiver Self-Assessment Questionnaire, which was devised by the American Medical Association,” he notes.
With both these self-assessments, caregivers are asked a series of questions about their experiences and the state of their physical and mental health. Each response is scored and then the total scores for each test can be interpreted to indicate the level of caregiver burden a respondent is under.
“The results they yield are generally reliable and valid indicators, which provide caregivers with insight into their own coping. On the basis of these tests, I’ve seen caregivers decide that they need more help than they were previously willing to accept,” Jacobs recalls. “This can be helpful for steadfastly independent caregivers or those who cannot afford or do not wish to see a therapist for insights into their situation.”
Whether caregivers use these quantitative tests or just rely on their gut feelings, they must frequently reflect on how they are doing. “The savvy marathoner heeds their bodily warnings and adjusts their stride and pace accordingly,” reiterates Jacobs. “Similarly, the savvy caregiver heeds physical and emotional signs and seeks greater support when needed in order to sustain their vital work.”
Take a Family Caregiver Burden Assessment
The heavy burden of caregiving can gradually overwhelm even the healthiest, most devoted and best prepared individuals. Make sure you do your part to sustain yourself and preserve the integrity of your care plan. This is especially true for sole caregivers who may not have a supportive care team to offer help or draw attention to their mounting responsibilities.
Countless family caregivers join support groups for encouragement and assistance, and many others opt for formal therapy or counseling to help make sense of the complex emotions this role elicits. Unfortunately, the latter option is often costly and, of course, takes precious time. This is where proven self-assessment tools can help caregivers come to terms with what they are truly feeling and realize the importance of seeking out assistance.
Start by taking this Zarit Burden Interview
After answering all 22 questions, add up the score that corresponds to your answers. Compare your total score to the scale ranging from "Little to No Burden" to a state of burden so severe that you are profoundly burnt out. On the last page of the assessment, you will find tips, resources and next steps that will help you reduce the burden of care and see that your loved one receives the level of care they need.