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Death to the Caregivers?

Posted By Barry Jacobs, John Rolland, Tuesday, November 12, 2013

It has been the most powerful and durable research finding and rallying cry of the family caregiving movement:  In 1999, the Journal of the American Medical Association published a study by University of Pittsburgh psychologists Richard Schulz and Scott Beach positing that stressed older adults caring for spouses with dementia had a 63% higher mortality rate than non-caregiving peers. That number, alarmingly large, stunned policymakers and politicians. Federal- and state-funded caregiver support programs were quickly developed. Ever since, the idea that family caregivers under duress have higher mortality rates has been an axiom of public health.

Now a new research finding that draws on data from the national REGARDS (Reasons for Geographic and Racial Differences in Stroke) Study challenges all that. In October 2013, the American Journal of Epidemiology e-published a study of over 3,500 stroke caregivers by a multi-institution team led by David Roth of Johns Hopkins that "failed to identify any [caregiver] subgroups [including those who were strained] with increased rates of death. " Quite the contrary: Through the use of a propensity-matched sample of non-caregivers and a proportional hazards model, they found that "caregivers had an 18% reduced rate of death compared with non-caregivers.”

The idea that being a family caregiver would confer some long-term survival advantage boggles the mind. Certainly, there are research and case studies that suggest that many family caregivers find positives, such as personal and spiritual growth, through their arduous work. The large National Alliance for Caregiving survey of caregiver attitudes in 2009 found that only about a third of caregivers described themselves as "highly stressed”; nearly a quarter said that caregiving didn’t stress them at all. But for family-oriented healthcare and social service professionals--as well as for the movie-going public who adored The Notebook, The Savages, and Amour-- the image of the beleaguered, bedraggled and bewildered family caregiver has held sway for so long that it is hard to imagine her in the rosy flush of health, vigor and longevity.

Critics of the Roth study will cast aspersions on its research design and patient selection. They will say that the stroke caregivers who were studied could not have had significant caregiver burden or were not under severe stress. They will say the participants did not caregive for long enough periods of time to be truly worn down. They will seek to launch their own research to disconfirm the hypothesis that caregivers live longer, not shorter, than the rest of us. 

"... caregiving can be a beneficial thing both for caregivers and their care recipients"
If, over time, they prove to be wrong, however, they will have to come to the conclusion that many people—possibly the majority—who make sacrifices to care for a loved one may actually find it an enriching and uplifting endeavor. Wrote University of South Florida psychologist and noted family caregiver researcher William Haley, Ph.D., the Roth study’s second author, in an email to me: "I do hope [our] paper helps the [caregiving] field attain a balance between concerns about caregiver health/well-being (which are legitimate) [and] recognizing that caregiving can be a beneficial thing both for caregivers and their care recipients.”

What would such a balance look like? It would take into account that certain individuals under certain conditions in certain relationships will languish in the caregiver role while others will outdo themselves, soaring above their usual functioning. The broad field of families and health will then need to take a deeper, more nuanced look at who will react positively and who negatively to this increasingly common and normative life task. We’ll be having discussions about the secrets of building caregiver resilience—not just through increased problem-solving and social supports but by ensuring that one has the ability to choose to caregive willingly and know it is making a significant difference to relieve a loved one’s suffering. Our clinical interventions will largely be focused on helping family members derive a larger sense of purpose and meaning as they go about the still difficult, grinding work.

Over the past 30 years, the family caregiving field has reaped attention and funding through its depiction of the dire situations of caregivers. If newer research slowly changes that carefully crafted image of the burnt out family caregiver, will it be the caregiving field that will languish in the future?  Or will the challenge to one of its foundational assumptions bring it new life?

Barry J. Jacobs, Psy.D. is the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program, a monthly columnist on family caregiving for, and the author of "The Emotional Survival Guide for Caregivers" (Guilford, 2006).


As Dr. Jacobs articulately describes, this is a stunning research paper with major public health implications.  Rather than debunking time-honored thinking about caregiver strain consequences, this paper opens up a new avenue of thinking that is more resilience-based.  Going forward, we can better elucidate the individual and family psychosocial factors that promote caregiver wellbeing and relationship growth.  It has always been my belief that we learn more by studying those who thrive in the face of adversity rather than those who falter.  What are the key ingredients that can promote improved prevention and family-oriented psychoeducation?  This in no way undercuts the biopsychosocial risks that caregivers and families face over time.  
We learn more by studying those who thrive in the face of adversity than those who falter

The study authors are clear that their goal is to find a better, more nuanced and balanced understanding of factors that both facilitate growth as well as those that are harbingers of caregiver risk.  They are mindful of the study limitations that require further research.  They note that this study did not distinguish caregivers of those with and without dementia, or severity of cognitive impairment.  These factors have significant implications for caregiver strain over time.  Also, they state that this study did not address caregivers facing end-of-life.  And, it is not an ethnically diverse population (e.g. Latino and Asian populations were not included), leaving many questions related to culture, such as gender roles and expectations and multigenerational traditions. 

Of major significance, beyond marital status, the study did not measure anything regarding couple or family relationship processes or functioning.  Therefore, their "subgroups” did not include family functioning as a variable. This leaves an enormous territory not addressed in this research.  Likewise, this study looked at mortality, not morbidity.  The latter involves myriad health and mental health consequences that may not bear a linear relationship with mortality.

My best hope is that this study energizes and promotes more sophisticated research regarding family caregiving with a greater emphasis on resilience, family functioning variables, and meaning-making and its health protective effects.  In turn, this has major implications for collaborative and integrated care and the vital role CFHA members can play in this area. 

John S. Rolland, M.D., MPH is Professor of Psychiatry and Behavioral Neuroscience, University of Chicago Pritzker School of Medicine; and Executive Co-Director, Chicago Center for Family Health.  He is the author of "Families, Illness, & Disability: An Integrative Treatment Model" (Basic Books, 1994) and forthcoming "Treating Illness and Disability in Families: An Integrative Model" (Guildford).

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Comments on this post...

Randall Reitz says...
Posted Wednesday, November 13, 2013
Barry, thanks for raising my awareness of this issue and research. While, I make it a point not to respond too high or too low to any new piece of data, I hope these findings pan out.

I am, however, surprised that you frame this as a cautionary tale for the family caregiver movement. Perhaps a comparison to the integrated care movement is in order. If for decades we had believed that integrating behavioral health into primary care created great satisfaction for physicians, but misery for behaviorists, I suspect that contradictory evidence for the plight of integrated behaviorists would be welcomed with open arms (not wrung hands).

The only people who will accept this positive news with ambivalence are people with entrenched interests in the prior image of the family caregiver. But, even for them, changing "surviving guides" into "thriving guides" shouldn't be too difficult, right?
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Bill Haley says...
Posted Wednesday, November 13, 2013
Hi Barry. Thanks for sending this to me. You did a beautiful job of presenting this and framing it. We published this paper in the hope that there would be a more balanced view of caregiving. Our study included some people who did very minimal levels of caregiving. They are part of the big picture too.

There is one minor correction I would like to note to your post. This study was NOT of stroke caregivers. In the REGARDS study, people are being tracked primarily for whether they have strokes. We ask them whether they are a caregiver for ANY person, not necessarily for a person with stroke. This is confusing because we also have a study that is a substudy of REGARDS, which is called CARES. CARES only looks at individuals within REGARDS who have had strokes, and then recruits their family caregivers.
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Carol Levine says...
Posted Saturday, November 16, 2013
My first reaction on reading the study by Dr. Roth and colleagues was to list all the family caregivers I have met over the past 25 years who died while their ill family members lived on. Anecdotes, not data, to be sure. My second reaction was to look more closely at what responsibilities the caregivers in this study reported. The definition of caregiving is one of the broadest I have ever seen: “Are you currently providing care on an on-going basis to a family member with a chronic disease or disability? This would include any kind of help such as watching your family member, dressing or bathing this person, arranging care, or providing transportation.” Really? Any kind of help? This is caregiving lite, by my standards. Yes, these people are indeed caregivers and should be counted but they cannot be evaluated on the same level as someone responsible for complex medication management, wound care, operating vents and feeding tubes, much less caring for someone with advanced dementia.

Both you and Dr. Rolland emphasize caregiver resilience and strengths and I agree that we need to acknowledge and build on those characteristics. But caregivers should not have to rely solely on their own inner resources to survive. For the first five of 17 years I took care of my late totally disabled husband at home, with only the help I could afford and no other support, I was constantly told by social workers, psychologists, and other well-meaning helping professionals how I had to learn to “cope” because if things weren’t going well it was my fault. One psychologist said to me, “Your life is over. Get used to it.” At some point, battered and bruised by the charges of incompetence and personal inadequacies, I took stock of my situation and said, “I’m doing the best I can. It’s the system that’s failing, not me.” And from then on I moved from being powerless to becoming an advocate for my husband and for other caregivers, if not so much for myself. With all my strengths and resilience, I suffered from some major health problems brought on in part and certainly exacerbated by caregiving.

In the policy world, where I spend a lot of my time, there is a lot of resistance to doing anything—i.e., spending any money—on caregiving support because this is supposed to be a labor of love and its own reward. Let’s not push the pendulum too far in acknowledging that many caregivers not only survive but do well. The level of unmet need is still very, very high.
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Barry Jacobs says...
Posted Sunday, November 17, 2013
I find myself agreeing with both of my impressive colleagues, Bill and Carol. "Caregiving"--a term that has only become part of common parlance in the last 20 years--has come to mean a broad range of helping activities, from the minimal sacrifice of, say, bringing an aging parent groceries once a week to the maximal sacrifices of hands-on, 24/7 dementia caregivers. Viewed this broadly, Bill is likely right: Many caregivers do not find their duties that taxing and are gratified by the opportunity to help. They may, in fact, live longer because of it. Viewed in its narrower, hands-on sense, Carol is likely right: These caregivers are hard-pressed, worn-down and ill-used. Without greater support, they are likely at risk for greater suffering and increased mortality.

I should hasten to add, though, that I believe that it is not just how arduous a given caregiver's duties are that determine whether or not she lives longer or shorter. I believe that many other factors come into play, including the degree of social support, the caregiver's beliefs about caregiving, the historical and present relationships between the caregiver and care recipient, and the larger dynamics of family and community. Yes, these factors are part of the "psychosocial" components of the biopsychosocial phenomenon of family caregiving. Call me a psychologist.

I think that Randall, sharply incisive as ever, rightly points out that the caregiving movement may have to refine its image to take into account the broader definition of family caregiving. That shouldn't weaken caregiver advocacy. It should just acknowledge the range of experiences that caregivers have during the months and years on this .sometimes smooth, sometimes bumpy path.
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Bill Haley says...
Posted Monday, November 18, 2013
I wanted to respond to Carol's post about our study. I have been studying the effects of stress on family caregivers, and doing research with interventions to help family caregivers, for over 30 years. I've also had a lot of experience in working with caregivers as a psychologist, and had caregiving experiences in our family. I'm well aware of the toll that caregiving can take on highly strained caregivers.

We didn't do this study with an agenda to prove that caregivers were resilient. If you look closely at our published article, you will see that we identified only one paper (the Schulz and Beach study) that has shown increased mortality among caregivers (that effect was limited to caregivers who reported strain). There are several other studies that we cited that have also found lower mortality among caregivers. These studies all come from different data sets, and most define caregiving more stringently than we did in our study. All come from population based studies.
We worked very hard to see whether we could identify subgroups of caregivers who did show higher mortality than their matched noncaregivers. In the paper, we discuss analyses of subgroups who spend high numbers of hours per week caregiving, who report high levels of strain, and subgroups based on relationship to the patient. We did not find any groups of caregivers that had higher mortality than noncaregivers, and for all groups, the direction of the effect was toward lower mortality in caregiving, after very careful matching on demographic and health effects. We cite the limitations of our approach to identifying caregivers, but also note that studies that only include caregivers who seek help for caregiving strain are not representative of the broader world of caregivers.
Our research is NOT intended to suggest that caregivers don't have problems, and our paper does not say that caregivers don't need assistance. I'm sorry for the bad experiences you had with people who were not sensitive to the heavy strains you have faced as a caregiver.

The Schulz and Beach paper, published in 1999, was a landmark in the field, and it has been cited by many (including me) to press for more assistance for caregivers. But it's a single study. If the finding from that study is re-examined by other investigators and can't be replicated, then it may not be a fact. There are now multiple studies that don't replicate the Schulz & Beach finding, and in fact find the opposite effect.
There are many other compelling facts that point us toward the need for family caregivers to have more supportive services, including evidence based interventions. Those other facts are not negated by our work. But the story is probably complex, and we have to be receptive to facts that don't fit our preconceptions or personal experiences.
Best wishes and all of us want to see the issue of caregiving get the attention that it deserves.
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Carol Levine says...
Posted Tuesday, November 19, 2013
Thanks for these comments.

Sir Austin Bradford Hill is credited with this definition: “Health statistics represent people with the tears wiped off.” My comment is intended as a reminder that in interpreting research about people’s lives it is important to see the tears as well as the smiles.

Let me be clear – my “bad experiences” were not the result of uncaring people but of a system that forced them to administer an uncaring system—one that assumes that families (still mostly the women in the family) are supposed to take on caregiving with no consideration of their own needs or other responsibilities. The assumption is that if you have a lot of money, you can buy the help you need and if you are poor, Medicaid is your safety net –a very leaky and insecure one but still the only option. People in the middle? Get rich or get poor. The latter is much easier.

I was repeatedly told that the only way I could get help (and I mean an actual person in the home, not a counseling session) was (a) get a divorce or (b) quit my job, spend down and go on welfare and Medicaid, where my husband would be eligible for nursing home care. When I said that neither was an acceptable option, I was dismissed as “in denial”—a phrase that has become a casual putdown in healthcare. In rehab my husband was a two-person transfer; no single individual was allowed to move him from bed to wheelchair. When I took him home he magically became a one-person transfer, and that person was assumed to be me. Beyond the financial strain (and this has become the most common complaint I hear from caregivers these days), there were countless indignities that my husband and I had to endure—doctors’ waiting rooms not set up for wheelchairs or a man who could not “hop up on the examining table,” receptionists complaining about him, endless waits for tests and procedures when he could barely tolerate a short wait for a TV program to start. Hospital says were nightmarish, more so than for most people because of my husband’s confused and labile mental state.

These are not problems that social support or family involvement or the best therapist in the world can fix. Yes, they can make it a little easier to understand and remove some of the burden of the guilt that professionals impose on you. I had the benefit of a very tough childhood, and the heritage of my immigrant grandparents with whom I lived, so I was relatively immune to guilt.

In one sense I fit very nicely into the picture in the study. I managed for 17 years to be the best family caregiver I could, I did not die during those years or immediately afterward. I am glad that I gave my husband the best possible quality of life; he got to see his grandchildren; he made new friends with the wonderful aides I hired and the underemployed actors I paid to read to him. He enjoyed occasional lunches at a restaurant and for a while we could even go to movies. I could not imagine having done it any other way. I found a way to use my experiences in a meaningful way. But I paid a huge price, and continue to do so. My anger at having to do this all on my own persists, as you can surely tell.
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Bill Haley says...
Posted Tuesday, November 19, 2013
Thanks Carol. I think it's very important that caregivers share their personal narratives, and that we don't rely just on statistics to understand caregiving. I've heard many other caregivers relate their stories of great difficulty. I also saw this up close within my own family, with caregiving for people with spinal cord injury and cancer having a huge impact on everyone's lives. It can be a very traumatic and life changing role.

As you say, you have survived your experience and put it to very good use, in helping others. I think everyone agrees that we need to do more to get caregivers direct help, and that family members shouldn't be expected to do this alone. We've accomplished so much in this field but have a long way to go.

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Matthew P. Martin says...
Posted Tuesday, November 19, 2013
I appreciate the dialogue that has taken place here thus far. Though there is some disagreement among commentators here about the value of research and statistics, I perceive everyone as caring deeply about the plight of family caregivers. Bill, you certainly speak like a researcher, one who believes in the progression of science and the value of scientific inquiry. And Carol you speak like a caregiver and a clinician, one who does not want the grinding pain and exhaustion of caregiving to be swept aside. The truth, I believe, is that you are both right. You are like two instruments playing distinct but vital lines of music in an orchestra.

I believe that we need rigorous research to help organize and make sense of the complexity of chronic illness and disability that patients and caregivers face. We need research that scrutinizes conventional wisdom and public opinion and challenges us to think. AND, at the very same time, we need reminders of the faces and stories attached to each data point. We should never lose sight of the real reason any of this work is done: to improve the quality of life for both patient and caregiver.

It is always challenging to perfectly reconcile hard data with the lived experience or narrative. However, it is entirely possible for individuals and entire organizations to hold fast to valued principles while simultaneously remaining open and flexible to new ideas.
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David Seaburn says...
Posted Tuesday, November 19, 2013
Terrific discussion! It reminds me of when the co-authors of Models of Collaboration (myself, Alan Lorenz, Bill Gunn, Barbara Gawinski and Larry Mauksch) started trying to define "collaboration." We realized that we thought of it as shared care with the MD/Mental health types working together on site. That was the quintessential form of collab (like the entrenched caregiver with a loved one who has dementia is the quintessential form of caregiving). We then quickly noted that there are many different shades of collaboration, and we had to account for as many of them as we could. Consequently, I proposed a "spectrum of collaboration" to capture all the variations, from the intense side-by-side work that I knew to the occasional phone collaboration which may be "collab lite." I think there should also be a "spectrum of caregiving" (or "levels" if you prefer the language of Bill Doherty and Mac Baird). I think it would be very valuable (if it hasn't already been done). Then research could be targeted to these variations in caregiving.
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Suzanne Mintz says...
Posted Friday, November 22, 2013
I was really surprised to read the study about family caregiver mortality. It flies in the face of all the research about the deleterious medical effects that caregiving can cause. It is true caregiving can make you stronger, physically, and mentally because of all the work you have to do and the new things you need to learn, but it is also true that the extreme stress that caregiving can cause does lead to premature aging. See the work of Ellisa Epel, PhD UCSF.

My gut reaction, and that is what it is; I am not a researcher, but rather a family caregiver for 39 years and a family caregiver advocate for 20, is that whether or not caregivers live longer than non-caregivers really depends on the level of their caregiving experience, how well they handle stress and take care of their own health. Given the intensity of my caregiving and how long I’ve been at, and how much longer I expect it to continue – my husband has chronic progressive MS – I could quite possibility have a shortened life expectancy. On the other hand my mom is 96 and going strong. I’m betting that I have her genes and will outlive my caregiving experience by many years, which raises all sorts of other issues.
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