When it comes to research on family caregivers, the words “burden” and “stress” appear almost ubiquitously in headlines announcing the results. Many family caregiver stories focus on the immense challenges inherent in looking after an aging or ill loved one, but a Johns Hopkins study aimed to turn this notion on its ear.
After comparing the number of deaths in a population of more than 3,500 caregivers with the number of deaths in a matched sample of 3,500 non-caregivers, researchers came to a surprising conclusion: those who were taking care of a family member with a chronic illness or disability had an 18 percent reduced risk of dying compared to their non-caregiving counterparts.
Comparing Research on Family Caregivers
These results fly in the face of previous reports linking the physical and emotional strain of caregiving with a greater likelihood of illness and death.
“Taking care of a chronically ill person in your family is often associated with stress, and caregiving has been previously linked to increased mortality rates,” says lead author David L. Roth, Ph.D., director of the Johns Hopkins University Center on Aging and Health.
Countless polls and studies support this bleaker picture of caregiver health. For example, a 2003 investigation found that women who provided nine or more hours of care each week for a chronically ill or disabled spouse had nearly double the risk of coronary heart disease. A paper published in the Journal of the American Medical Association claimed that highly stressed spousal caregivers are 63 percent more likely to die than members of a non-caregiving control group.
Examining the Brighter Side of Caregiving
As a population, family caregivers are more likely to report lower health quality and engage in fewer self-care behaviors. Anyone who has taken on the role of family caregiver can attest to the physical, emotional, social and financial challenges that come with this responsibility. Whether the position is accepted out of deep love, a sense of duty or a lack of alternative options, a unique set of difficulties inevitably surfaces during each caregiver’s journey.
Acknowledging this reality is an important step towards developing healthy coping mechanisms and stress management skills, but could there also be value in looking beyond the traditional caregiving paradigm?
“Negative public health and media portrayals of the high risk of family caregiving may do a disservice by portraying caregiving as dangerous,” explains Roth. “In many cases, caregivers report receiving benefits of enhanced self-esteem, recognition and gratitude from their care recipients.”
Results of a survey of more than 1,400 caregivers conducted by the Associated Press-NORC Center for Public Affairs Research on public attitudes related to long-term care in the U.S. supports Roth’s statement. While half (51 percent) of interviewees admit that their caregiving experiences were stressful, most (83 percent) say that providing care was a positive experience in their life. Seventy-seven percent report that caregiving has strengthened their relationship with their care recipient.
Roth’s own study admittedly has its limitations—specifically, a lack of knowledge of the types of care being provided by the caregivers and the nature and degree of their care recipients’ needs. He mentions that there can be undeniable rewards of family caregiving, but only if highly stressful situations can be avoided or managed effectively.
Furthermore, this research shows that caregivers were also more likely to derive the aforementioned benefits if they were willingly looking after family members who were able to express gratitude for the care they were receiving. Time commitment also appears to play an important role in caregiver burden versus satisfaction. For example, a 24/7 caregiver is less likely to encounter the positive health benefits of caregiving than someone who does not live with their care recipient or have to maintain a constant state of vigilance.
When Caregiving is Distressing Instead of Rewarding
Unfortunately, many adult children find themselves in the tricky position of taking care of parents they don’t like. Their caregiving experiences are more likely to be characterized as harrowing than rewarding, especially if they live together.
Conditions like Alzheimer’s disease and other types of dementia are bound to have significant impacts on caregivers’ experiences as well. As a senior declines, their personality, cognitive and physical function, and communication abilities are often completely transformed. These changes can prevent dementia patients from recognizing their caregivers, regulating their moods, abiding by social norms, using basic etiquette, and articulating thoughts and feelings—especially those of appreciation.
To make matters worse, the one certainty that comes with a dementia diagnosis is that a person’s condition will deteriorate. The struggle that dementia caregivers face is two-fold. Care recipients not only require increasingly exhaustive care, but they also lose the ability to recognize and understand the toll that meeting their needs has on their family members.
In fact, some care recipients (whether they are living with cognitive decline or not) become perpetually angry, demanding and abusive. What may have initially been a rewarding experience of providing a loved one with occasional assistance while enjoying each other’s company can turn into an unpaid full-time job, an inescapable source of caregiver stress.
Respect Your Limits and Recognize Caregiver Burnout
Whether the situation starts off as an impossible burden or slowly becomes more and more difficult to shoulder, the bottom line is that it’s crucial to recognize when caregiving has become too much and reevaluate your approach. Only then can you enjoy the sense of fulfillment that your selflessness and compassion bring without the negative effects on your own physical and mental health.
Countless caregivers have shared their experiences—good and bad—on the Caregiver Forum. Many have helped each other through difficult care decisions and caregiver burnout. Some have approached caregiving as an opportunity to grow closer with their loved ones and cherish their limited time together. Some have gained nothing but medical setbacks and mental health issues of their own. Still others consider their time spent caring for family as downright bittersweet.
What do you think about the notion that caregiving may be beneficial for some? Have you found any aspects of your time as a caregiver to be rewarding? Is there a way to help more caregivers realize the potential benefits of looking after a loved one?
Sources: Family Caregiving and All-Cause Mortality: Findings from a Population-based Propensity-matched Analysis (https://www.researchgate.net/publication/257350046_Family_Caregiving_and_All-Cause_Mortality_Findings_from_a_Population-based_Propensity-matched_Analysis); Caregiving and risk of coronary heart disease in U.S. women (https://www.ajpmonline.org/article/S0749-3797(02)00582-2/fulltext); Caregiving as a Risk Factor for Mortality (https://jamanetwork.com/journals/jama/fullarticle/192209); Long term care in America: Expectations and realities (https://www.longtermcarepoll.org/wp-content/uploads/2017/11/AP-NORC-Long-term-Care-2014_Trend_Report.pdf)