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I'd like to use this number for a presentation, but I'm unable to find the original studies that led to this conclusion. Thank you!

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I think it is 1 in 5 caregivers die before the people they are caregiving for . Check The NY Times Or google Images Of One in five Caregivers die before the person they are caring for and articles will come up . I read The Cape Cod Times Obituaries because I grew up there . One Lady went Into the garage and turned On The car with her Husband who had Alzheimers and Breathed In the carbon Monoxide . Another young girl committed suicide she was caregiving . I Noticed a Young Couple died with in a couple days of each other - He Looked a couple years Older and Ill so she took her Life . A Woman that was slightly mentally challenged after her mother died that Day in the Nursing home - The ambulance took Ida to the Nursing home where she Had a heart attack at 4 am . The effect is cumulative . My Mother deteriorated after My brother died . She died before my other brother would die 10 Months Later . So Yes caregiving is stressful , isolating , No Love Life, no way to have a career or travel . It ages you too - It takes about 2 years to recover after a Person you cared for dies . Caregivers are like a Plant with Out Water and Sunlight . A caregiver is trying to Keep another person alive while neglecting their own needs and Using their Life force which gets depleted . .
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According to the American Psychological Association (www.apa.org) a little over 30% of unpaid caregivers have reported serious suicidal ideation with the past 30 days in the study. The APA also provides a stat that 66% of unpaid caregivers reported experiencing serious mental health challenges. Other international studies as well as the National Institutes of Health offer very similar findings.

According to the American Medical Association, in a recent study, non medical health care support has a suicide rate of 21 per 100,000 compared to 12.6 per 100,000 for the general population. The AMA has some older studies that cite a death rate of 70% for caregivers over the age of 70 before the care recipient passes.

As an unpaid caregiver for both of my parents over the past 16 years I can confirm my experience to those statistics.

I’m 45 years old. My father is 80 years old.
He will absolutely out live me.
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KNance72 Nov 2023
I Hope Not
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Just to add, when you think on it, often enough caregivers are spouses or partners, not children. An elderly person taking care of another elderly person leaves you with about a 50% risk of their passing first. Or even more risk, due to their added burdens and stress. We see that a lot here.
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Not exactly what you asked for, but . . .https://www.brmmlaw.com/blog/2014/september/70-of-all-caregivers-over-the-age-of-70-die-firs.aspx
Also, before using it in a talk, you may want to check to see if the article's findings have been challenged. :)
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cwillie Nov 2023
I saw that too and it is essentially just an article that regurgitates oft repeated and anecdotal evidence.
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CW, that's what I got from it too. But if you turn it around, even though a "sizeable proportion" of caregivers DON'T die first, what smaller proportion DOES, and can you prove any causation?

I think more useful are the studies that compare the relative health of caregivers and non-caregivers, and those that measure the changes that stress causes in many caregivers.
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Yes, there are studies available on the likelihood of caregivers dying before their loved ones. According to a study published in the Journal of the American Medical Association, spousal caregivers who were experiencing caregiver strain had mortality risks that were 63 percent higher than non-caregivers. Another study conducted by AgingCare found that 30-35% of caregivers die before the person they are caring for. The study also highlights that caregivers are as important as the people they care for, and if they abuse their bodies, minds, and spirits while caring for others, no one wins.

The study was published December 15, 1999 and conducted by the University of Pitsburgh - "Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study

you can find the study here.
https://jamanetwork.com/journals/jama/fullarticle/192209
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cwillie Nov 2023
But AgingCare doesn't conduct studies, they just publish opinion articles.
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I've read through this publication and as far as I can see the conclusion is that this is a false narrative.
"The findings emphasize that for a sizable proportion of persons with ADRD, their spousal caregivers do not die before them."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6292823/

(ADRD = alzheimer's disease and related dementias)
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I was just watching a Ted talk on youtube about supporting caregivers. The speaker quoted agingcare.com as the source saying 30% of caregivers die before their patient.
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cwillie Nov 2023
LOL
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Its only common sense that a caregiver working 24/7 to provide care for a sick and elderly loved one will get sick from STRESS alone, never mind lack of sleep, lack of a social life, quitting a job and lack of using their minds, etc etc ETC. Ask any overworked and stressed out to the max caregiver here on this forum how they're doing and you'll get an EARFUL. Studies have to be done in order for statistics to be available!
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I was able to find the 2 statistics that I quote on here often. The first one being that caregivers have a 63% higher mortality rate than non caregivers. That study was done by the University of Pittsburgh by researchers Richard Schultz and Scott Beach, reported in the Journal of the American Medical Association in 1999.
And the other statistic of 40% of caregivers that are caring for someone with dementia dying before the one their caring for from stress related issues came from a more recent Stanford Medicine study.
Hope that helps.
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OP is not asking about ALZ, I think she is looking at Caregiving overall. And its not just they die, they start having illnesses that make it even harder to care for someone. Illnesses that they may have never had if not for caregiving. Stress is bad for the body and the mind. You have a parent who is stubborn and wants everything their own way. A child trying to care for a Narcissistic parent or one who abused them. A parent with ALZ/Dementia who cannot be reasoned with or can't be made to understand. You try to do whats best for the LO but in the meantime lose yourself and your health.
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SusanHeart Nov 2023
Oh wow JoAnn You could have not said this any better. How true that is.
Thank you for the post.
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I've always thought when you consider that a high percentage of caregivers are spouses who usually are also of advanced age and have their own health challenges, or are senior aged children, it becomes a question of whether caregiving was a contributing factor or is just coincidental.
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AlvaDeer Nov 2023
Think you are right that it cannot ever be known really how much of a "contributing factor" such caregiving is or is not. Good point!
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Here's another that shows that caregiving that is manageable and done for a grateful patient can increase life-expectancy:

https://www.hopkinsmedicine.org/news/media/releases/johns_hopkins_led_study_shows_increased_life_expectancy_among_family_caregivers#:~:text=In%20a%20report%2C%20published%20in,year%20period%20of%20the%20study.
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BurntCaregiver Nov 2023
I don't think caregiving for someone who is grateful for it will increase the length of someone's life. It certainly can make the experience far more pleasant though.

I find that over my 25 years in service as an in-home caregiver, the clients that were grateful and even pleasant received better care. Not better in terms of the basics of being clean, safe, fed, medicated. I mean better interaction with the caregiver who will engage with them more.

It stands to reason that a person will go the extra mile for someone who is grateful to them for caring. I always did because people like to be appreciated and recognized for it.

Believe me there's nothing more disheartening or that tries on your patience more than cleaning up the sh*t of some stubborn, needy person who feels compelled to speak their mind or get personal to and about the person wiping their a$$.

You know what saying, 'kill them with kindness'? Caregivers have one of our own when dealing with the stubborn, ingrate types. 'Spite them with silence'. When it's a family caregiver it's called going 'Grey Rock'. Basically, it's do what you have to do to meet the basic needs - clean, fed, safe, meds then check out on the rest.
In many ways the smartphone with internet is the best thing that ever happened for homecare workers.

I don't think grateful care clients or family members will extend the life of their caregivers. I think that it makes the job of caring for them less miserable.
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This is a study that examines chromosomal changes that take place:

https://www.lbda.org/long-term-caregiving-may-shorten-life-up-to-eight-years/#:~:text=A%20new%20study%20by%20Ohio,by%20four%20to%20eight%20years.
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It's a myth according to the nih.gov.

"WebDec 12, 2018 · To our knowledge, no study has examined the number of caregivers who die before a care recipient with Alzheimer’s disease and related dementia (ADRD). This analysis sought to generate empirical evidence to determine the proportion of dementia spousal …
Author: Joseph E. Gaugler, Eric Jutkowitz, Colleen M. Peterson, Rachel Zmora
DOI: 10.1016/j.trci.2018.08.010
Publish Year: 2018"
Publication: Alzheimers Dement (N Y). 2018; 4: 688

(Caregivers dying before care recipients with dementia - PMC (nih.gov))

If you type into bing the the question "Do caregivers die early?" nih.gov will quickly tell you that as of 2018 none exist.

Apparently this is a popularized myth.
May have started with this article appearing in Kuel Life saying that "studies show that 30% of caregivers die before..........blah blah".
"Caregiving Can Be Deadly. Put On Your Oxygen Mask First Kuel Life"
Fun article. But no real studies listed.

I DO think it takes a dreadful toll on caregivers, and most may end WISHING they were dead. I don't think it kills many.

As Geaton says, we have to stay as computer literate as we can. It was your question that led me to go browsing. However Grandma's browsing brought up some stanford studies. So honestly, who knows?
It's all fun to play with, but imho your death is more likely predicted by genetics and the amount of abuse you subject your body to than to caring for a loved one. I sure do think it taxes your mental health, though.
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BurntCaregiver Nov 2023
You would be mistaken if you think it doesn't kill many. I personally know how caregiving can shorten a person's life.

You're only looking only at the stress-related illnesses that caregivers often suffer from and even die from.

Caregivers also neglect their own health when they're wearing the chains of that slavery. They will often abuse alcohol, drugs, and food. I gained nearly 100 pounds when I was enslaved to my care monster mother. I also smoked two packs a day. I gave up on life because of caregiving and if I didn't get my act together I very likely would be dead today.

Let's factor in how many caregivers get driven to an act of desperation and take their own lives because every part of their lives have to be centered around the needy monster they find themselves enslaved to. Many times the person attempting suicide doesn't die, but is left with permanent damage and they often die soon after of something else.

I believe the 30% statistic is right. It could even be higher when it's senior citizen children and elderly spouses who have to meet the bottomless pit of demands a caregiver gets heaped on them 24 hours a day.
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Google is your friend:
According to a recent Stanford Medicine study, some 40 percent of Alzheimer's caregivers die before the patient. It isn't disease or accident that takes these caregivers, but rather the sheer physical, spiritual and emotional toll of caring for someone struggling with the Alzheimer's.Jan 11, 2018
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AlvaDeer Nov 2023
I found the opposite info from nih.gov, that no studies exist. So go figure. I guess what they say about "statistics" is true.
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CareSpeaker
Years ago I picked this info up here on aging care forum. I could never remember, 30 or 40%, and when I looked for the source a few days ago, I read an even larger number for if the caregiver was over 70. It was on a lawyers website listed below which I looked at again and it doesn’t offer a source.

I’ve been guilty of passing this information on and have to admit I’ve only ever seen it on this site.

The link Ana listed below and I’m listing here is from 2018. It is worth reading as while it doesn’t confirm the numbers we are looking for, it reports it as unknown, in spite of, or perhaps because of the results of study they do report on.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6292823/


https://www.brmmlaw.com/blog/2014/september/70-of-all-caregivers-over-the-age-of-70-die-


** I also found a study on the effects of stress on mental health and how it shows up later in life that might be helpful for your presentation.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3654031/
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Independence4seniors, a home care service in Illinois (bias, anyone?) claims 63%, without citation.
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I have heard all sorts of numbers tossed around. I did find this, although it does not support 30%. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6292823/
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Geaton777 Nov 2023
From that link:

"Although a handful of studies have examined mortality among caregivers of persons with Alzheimer's disease or a related dementia (ADRD), the proportion of caregivers who die before their cognitively impaired care recipients remains unknown."

The first time a participant on this forum cited a number, it was 20%. Having worked around the medtech sector (and being a little familiar with how clinical studies work) I don't know how they would be able to attribute the deaths directly to the caregiving, since many caregivers are in their 50s and above, when our health starts to decline even without doing any caregiving. Maybe it has more to do with people neglecting their own selves (or being uable to access their healthcare resources) as they sacrifice their all for their needy LO?
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