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"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?
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.
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
"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.
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.
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.
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.
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.
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.
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!
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.
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."
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
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.
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. :)
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.
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.
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 . .
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
"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?
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/
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
"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.
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.
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.
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.
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.
Thank you for the post.
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.
"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)
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
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.
Also, before using it in a talk, you may want to check to see if the article's findings have been challenged. :)
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.