Good News! Caregiving Probably Won't Kill You

Steve Wishman
April 3, 2023

Burnout is a real issue affecting caregivers of all types, and some shocking statistics have been floating around lately. One study claims that 70% of caregivers over the age of 70 die before their care recipients. Another study suggests that 30% of all caregivers die before those they are caring for. After some cursory research, I find these numbers to be a bit "click-baity" and hard to swallow, as these articles lack citations and are often posted and promoted by estate planning businesses. (Is EVERYTHING a scam these days? Sometimes it feels that way.)

Turning to real science, I found an ACTUAL research paper posted on the National Library of Medicine's website. Researchers conducted descriptive and survival analyses on up to 17 years of data from a nationally representative Health and Retirement Study to evaluate the proportion of spouse caregivers who died before their care recipients. The results show that only 18% of spouse caregivers died before their care recipients, and spouse caregivers had a significantly lower risk of mortality than their husbands or wives with Alzheimer's disease or a related dementia (ADRD).

Available syntheses of population-based studies suggest mixed overall effects of caregiving status on mortality. In brief, the available findings imply that caregiving itself is not associated with an increased risk of death.
Kaplan-Meier survival curves for spouse caregivers and persons with ADRD–current version. Abbreviation: ADRD, Alzheimer's disease or a related dementia.

So this is good news! However, this doesn't change the fact that caregivers are constantly confronted by direct threats to their mental health, and indirect threats to their physical well being. Peter Vitaliano, a professor of geriatric psychiatry at the University of Washington and an expert on caregiving, said that the chronic stress of caring for someone can lead to high blood pressure, diabetes and a compromised immune system. "Caregivers are usually so immersed in their role that they neglect their own care—The stress is not only related to the daunting work of caregiving, but also the grief associated with the decline in the health of their loved ones." This is a condition that is increasingly being referred to as “caregiver syndrome” by the medical community.

But Vitaliano isn’t sure giving caregiver syndrome the status of an official diagnosis would be a good thing. He argues that if “caregiver syndrome” were listed in the Diagnostic and Statistical Manual of Mental Disorders (a text published by the American Psychiatric Association that defines all mental health disorders) it could stigmatize those that have it. “Caregiver stress is directly related to the way our society views the elderly and the people who care for them,” Vitaliano says. "Today, caregiving is viewed largely as a burden in this country. If it were viewed as more of a societal expectation and people were willing to offer more support, fewer caregivers would suffer in isolation."

From a personal level to a societal level, the remedy for suffering is the same. We have to work on ourselves and seek a path of compassion for others. Sometimes that feels unfair, because we're already burdened with responsibility and grief. Why do we have to add self-improvement to our to-do lists? Can't the universe cut us some slack and allow us to point to external causes for our suffering? The truth, really, is that this is also good news for us, because it puts us in control of our suffering. The one thing we can actually control in this reality is how we react to things.

Working on ourselves is not easy. In fact it's some of the hardest work there is. But for ourselves and everyone around us, it is always the most important work we can do. When viewed through this lens we see that caregiving becomes a gift instead of a burden. Caregiving presents us with a firehose of opportunities to practice patience and forgiveness, and not just for our care recipients and health care institutions. We need to develop patience and forgiveness for ourselves. Finding a balance of self-care and caring for others is the key to moderating our mood, and staying mentally fit in the face of grief and adversity.

We must take every opportunity to appreciate the tiny, wonderful things in our lives. We must let go of our resentments and hangups that truly do not matter. And we must not beat ourselves up for getting hung up on them in the first place. We can breathe. We can let go.

The good news is we are in control.

Link to the study:

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Steve Wishman

Steve Wishman is the founder of Zen and the Art of Caregiving, and author/illustrator of How Mom Died, a webcomic/memoir chronicling his experiences as a caregiver for his mother at the end of her life.