Do Dementia Caregivers Really Die First?

Another Vote for Science vs Hearsay

Like a Bad Penny, this dire admonition keeps showing up: “Caregivers Die First!”

I heard this first about 10 years ago at a talk at a local assisted living facility. I had just retired to care for my husband, who had Alzheimer’s dementia. I was looking for support and information. The speaker, trying to encourage caregivers to take care of themselves so that they would be there for their loved one, said it not once, but three times at the beginning of her talk: “Research Shows, Caregivers Die First!” I was blindsided by this dismal news. I had never heard or read this before. I had not anticipated falling on my sword for my husband, although I loved him dearly. Later, I asked her to send me the citations for the research showing that as caregivers, we die first. Her response was telling: She said that when she was hired years ago to run a new facility, one of the main reasons was that “professionals were attending so many funerals. Not for the clients, but rather the caregivers.” She went on. “I can’t tell you the source, but I have heard the same information shared by professional speakers through the years.”

Sorry ma’am, but personal experience and hearsay, even repeated, isn’t necessarily fact.

I heard it again a few weeks ago, this time from a former caregiver. When I asked her about the source, she sent me the link to a 2014 blog by a law firm. The blog was entitled “70% Of All Caregivers Over The Age Of 70 Die First. Is Caregiver Syndrome A REAL Medical Diagnosis?” Another strong statement about the terminal effects of caregiving. At least I now had a resource I could read for myself.

The authors of the legal firm’s blog cited a multi-year research study by University of Pittsburg researchers Richard Schulz and Scott Beach and published in The Journal of the American Medical Association in 1999. The study was groundbreaking because it followed up on previous research findings that caregivers with high care demands and persistent stress are more susceptible to a variety of poor health outcomes including depression, compromised immune system function, and cardiovascular problems. By extension, it was possible that caregivers who experience chronic stress, particularly those who are older, could have a higher mortality risk. No one had been able to test this hypothesis because studies like this require following a large enough number of participants to make appropriate statistical comparisons, and across enough years to quantify deaths. These studies are expensive and time-consuming to conduct. Schulz & Beach were able to compete for the then available federal funding and conduct the appropriate study. Their findings indicated that caregivers over the age of 65 who reported higher mental or emotional caregiving strain had a 63% higher mortality rate than their age-mates who were not caregivers. The study has been cited by other researchers almost 2,000 times.

The findings highlight the importance of finding ways to alleviate caregiver stress in older adults, but they do not show that caregivers die before their loved one. There was never a comparison of mortality rates between the caregiver to their care recipient. Why is this an important distinction? Because as caregivers, we are afraid the job might kill us. And the most selfless among us want to make sure that their loved one with dementia is not left alone in the world by their own early demise.

I have a friend with non-curable, but treatable cancer. She wants to live at least long enough to see her husband through to the end of his dementia (to his eventual death). She is in her 80’s and she’s satisfied that she’s had a good life. I don’t think the message that “the caregiver dies first” is an empowering one for her. The inaccurate admonition notwithstanding, she tends to herself well and does not report high mental and emotional anguish from caregiving. To quote her, “If I do die first, it will be because I have cancer and not because I am a caregiver. It will also piss me off.”

I think anyone who has done it would agree that caregiving is stressful, as well as mixed with rewarding and even heart-warming experiences along the way. Arguably, the long-term nature of most dementia caregiving situations, the often-troubling changes in behavior on the part of the care recipient, and the ultimate outcome of the long goodbye may contribute to a sense of distress and burden. I know that I felt it, and in the dementia caregiver support groups I belonged to, caregiver distress was rampant. Does it feel like this caregiver job might kill you and you might die before your loved one? Yes, sometimes. Maybe even often! Should caregivers be taking as good care of themselves as they do their loved ones by getting help and feeding their own souls? Absolutely! Does a statement like “Research shows, the caregiver dies first” motivate caregivers to take care of themselves? I don’t think so. And it’s not what the research shows.

If you are a dementia caregiver, or any manner of caregiver, you are worthy of taking care of yourself, and not just so you will live long enough to see your loved one through their disease. You are worthy of love and attention just because you are you.

https://drbeverlythorn.com/

Citation: Schulz R, Beach SR. Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study. JAMA. 1999;282(23):2215–2219. doi:10.1001/jama.282.23.221

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