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Quality of life at the end of life

The Good News About The Longer Lives Of Family Caregivers

This essay was originally published in The Huffington Post. Re-posted with Jacobs’ permission.

The national narrative on family caregiving has been largely negative.

Not a week goes by without the publication of a new caregiver memoir about how trying it was to care for a parent with dementia. Not a month elapses without some news item of a caregiver killing his care recipient and then himself somewhere in America. The websites of caregiver advocacy groups add to this negative impression with a steady stream of reports about the effects of caregiver stress among different cultural groups struggling with various kinds of arduous caregiving.

It is enough to discourage any family member from taking up the caregiving cudgel or, at the least, to approach it with fear and dread.

But a counter-narrative is starting to emerge.

A survey by the AARP Public Policy Institute released in early November found that—though more than half of caregivers are stressed and worried and 40 percent feel overwhelmed—over 90 percent of them say they are pleased about helping a loved one and that almost 90 percent of those loved ones are grateful for their caregivers’ efforts. The survey also pointed out that caregivers who felt better prepared for their caregiving roles tended to handle them much better.

These positive findings fit into a growing pattern. Thirty years of caregiver advocacy and improved services seem to be making a difference. According to a paper to be published in the prestigious academic journal, The Gerontologist, by Johns Hopkins University researcher Jennifer L. Wolff, Ph.D., spousal caregivers in 2015 reported significantly less strain and more use of respite services than those studied in 1999.

The negative narrative of caregiving has been—and is still—over-sold

That paper is co-written by another Hopkins caregiver researcher, David Roth, Ph.D., who, along with William Haley, Ph.D. of the University of South Florida, has published several articles in recent years which have found that family caregivers are more stressed than non-caregivers but, paradoxically, tend to live longer. In their latest article—to be published in Psychology and Aging and co-authored with Stephanie L. Brown, Ph.D.—caregivers live 16.5 percent longer, to be exact. Their hypothesis for why this occurs: So-called “pro-social helping behaviors” have a neurohormonal effect on humans that promotes immune system homeostasis. In other words, helping others, especially those we love, may be difficult in many respects but has beneficial effects on our health.

What should we make of these more positive findings?

They take nothing away from the fact that caregiving is often hard and that most caregivers report that they find it stressful. There may also be sub-groups of caregivers for whom caregiving is simply nightmarish. But it is a mistake to paint it as wholly deleterious or deadly. It is a more complicated picture than that. As a clinical psychologist specializing in counseling family caregivers and as a former caregiver myself, I conclude the following:

The negative narrative of caregiving has been—and is still—over-sold: I understand the good intentions and political reasons for publicizing the caregivers’ plight. Perhaps we would not have the same level of public funding and support that we do today if family caregiving was not originally depicted as a public health emergency. But we are now beyond that one-dimensional model. It appears increasingly likely that most caregivers find at least something positive in their caregiving experiences and that they grow to some extent personally and spiritually through caregiving. The majority of them, if given a second chance, would still choose to provide care to their loved ones.

It matters how you approach and what you learn from the caregiving experience: I’ve seen caregivers who felt entrapped by caregiving. I’ve seen caregivers who felt entranced by it. The latter works better. According to Hong Kong-based caregiving researcher Sheung-Tak Cheng, Ph.D., guiding caregivers toward identifying caregiving’s positive rewards —such as giving back to someone who has cared well for them or upholding some moral value—helps them avoid depression. I would speculate that finding the silver linings has even greater effects—allowing caregivers to go about their difficult work with more resolve and increased physiological benefit.

The responses of care recipients greatly impact caregivers: If caregivers’ efforts are cherished and not resented by care recipients, then those caregivers are more likely to feel positively about the work that they are doing. Conversely, the caregiver who is, say, preparing meals for a paranoid loved one convinced the food has been poisoned will be more frustrated and downtrodden. The care recipient’s response therefore often shapes the caregiver’s experience which affects the potential health-promoting effects of caregiving.

We are entering a time when a more nuanced and dynamic sense of family caregiving is coming into view. It includes positive aspects, including increased longevity. That may be surprising for some advocates or even some caregivers. But it is not surprising for the majority of people who strive sometimes valiantly, sometimes ambivalently to care for those they love.

– Image courtesy Pixabay