Exploring Human Potential

The Bob Butler Tribute: Day 4 – When Caregivers Need Care


When Caregivers Need Care
Mike Magee

If you take a look at demographic trends, one thing is very clear: The old three-generation family – child, parent, grandparent – is rapidly giving way to a new model that can be four and even five generations deep. (1)

Imagine a family that includes not only living great-grandparents, but even great-great
grandparents. Now imagine all the stress that might occur if you were stuck in the middle of this multi- generational family – providing care and support for kids on the one hand and aging parents and grandparents on the other.

The fact is, an increasing number of families, roughly 25 percent right now, are relying on informal family caregivers to bridge the needs of these multi-generational families.(2)

As we gain better understanding of this informal and highly motivated workforce of caregivers, we can see they are, indeed under a great deal of stress. This, of course, is not surprising, seeing that they are unfunded, socially isolated, and overcommitted in the extreme. (3)

These caregivers are mostly family members, predominately third-generation women between age 45 and 65, balancing the needs of parents and grandparents with children and grandchildren.(3) This is quite a lot to handle, and the situation certainly begs the question – who’s watching out for the health of the caregivers while they’re watching out for everyone else?

A coalition of health theorists are increasingly realizing that today’s health care infrastructure and assets, designed over the prior century, are of little value in advancing preventive health care. They were built around the perceived needs and financial incentives of an interventional system. In fact, a preventive system is literally 180 degrees in a different direction, and its ultimate success will be measured by a decrease in the daily reliance and expense of what we currently define as our health care system.

As we seek to reposition the new health care system around education, behavioral modification, and lifespan health planning and management, the home, in all its variations, is front and center.(4) But while the home may be where the heart is, it is not currently where the health is. This presents both a challenge and an opportunity, to build out the home, (not yet the exclusive claimed turf of any major health care power player), in a way that improves intergenerational wellness and simultaneously strengthens the bonds between the people and the people caring for the people.(5) This of course will require new systems, linkages, products and services.(6) It will also demand intelligent, early steps to protect the health and welfare of family caregivers.

How vulnerable are they?  A careful examination of the health status of couples who
encountered chronic illness is revealing. Out of half a million couples between ages 65 and 98, 74 percent of the males and 67 percent of the females were hospitalized at least once between 1993 and 2002. Forty-nine percent of the husbands and 30 percent of the wives died during the study period. Also quite striking was the fact that a large number of surviving spouses died within a year of the loss of their loved one. The mortality rate was more than 6 percent among the men and 3.5 percent for the women.(7)

This study also revealed intriguing information about the causes that often contribute to the early loss of a caregiving spouse who survives a partner’s death. The data uncovers a U-shaped curve. The initial peak in risk occurs one month after a partner’s hospitalization and appears to be related to significant physical and psychological stress and interruption of daily life routines on the part of the spouse. Strikingly, a spouse’s risk of dying from the stress of spouse hospitalization within the first 30 days is near equal to the risk associated with a partner’s death. Risk levels gradually decline, reaching a low point between three and six months after initial hospitalization, as spouses adjust to the new reality. After six months, however, risk begins once again to steadily rise over the following year or two. It is believed this is, in part, a result of weak support networks, social isolation and bereavement.(7)

Risk to the spouse seems also to be affected by what disease causes the partner’s
hospitalization. This is logical considering that different diseases affect activities of daily living, or ADLs, differently.(8) For example, stroke, hip fractures, dementia and congestive heart failure impact ADLs to a greater extent than do heart attacks, emphysema and cancer.(9) A review of 15,000 patients shows that levels of disease-induced disability from least to most are cancer, respiratory disease, heart problems and stroke.(10)

When one looks at impact on the spouse, it is important not only to consider the impact of physical and emotional stress, but the loss of social, emotional, and economic support. Effects are often immediate and direct, such as deterioration of nutrition, increases in drug, alcohol, or cigarette use, and loss of sleep.(11) There is also evidence that these primary effects can secondarily undermine immune defenses, which increases vulnerability to disease.(12) Socioeconomic vulnerability and age accentuate the overall threat. Some have also theorized that the joint vulnerability of partners may reflect the sharing of traits that contribute to poor health outcomes. Consider, for example, if both partners smoke, or one smokes and the other is inhaling secondary smoke.(7)

As our health care system moves toward prevention and increasing reliance on family-based informal caregivers to ensure multi-generational health, it’s important that we anticipate the needs of those involved and offer timely response and intervention.

For a second- or third-generation family member, what should you do for the spouse or partner of a patient or grandparent who is hospitalized? First, recognize that the non-hospitalized loved one is vulnerable, in both the short and long term. Second, check on the partner’s current health status. Make sure that scheduled medical appointments and tests are not missed, and that current treatments are not discontinued. Third, bolster up home support to ensure reinforced nutrition,housecleaning, and companionship to address isolation and fear. In the first 30 days, monitor them on a daily basis and long term, assess their levels of bereavement and seek professional help, if necessary.

Finally, there’s certainly a message in this for health policy planners.  In the words of Doctors Nicholas Christakis and Paul Allison, experts in the field from Harvard Medical School: “…it is clear that a person’s illness or death can have health consequences for others in his or her social network.”

This observation, in turn, means that efforts to reduce disease, disability and death can be self-reinforcing, since a decrease in the burden of these events in one person can have cascading benefits for others. Health care might indeed be more socially efficient, and more cost-effective, than is suggested by looking at individual cases alone.”(7)  Yet another vote for a multi-generational, home- centered, preventive health care system.

1. Alliance for Aging Research. “Medical Never-Never Land: Ten Reasons Why America is Not Ready for the Coming Age Boom.” 2002. Available at:
2. Shalala D. The United States Special Committee on Aging. “Long Term Care for the 21st Century: A Common Sense Proposal to Support Family Caregivers.” Testimony before the United States Special Committee on Aging: March 23, 1999.
3. Cohen JE. Human Population: The Next Half Century. Science. 2003;302:1172-1175.
4. Dishman E. Inventing Wellness Systems for Aging in Place. Computer. 2004;37:34-41.
5. Technology for Adaptive Aging. Pew RW, Van Hemel SB (eds.). National Research Council. Washington DC: National Academies Press, 2003.
6. Center for Aging Services Technologies. “Imagine — The Future of Aging.” Available at:
7. Christakis NA, Allison PD. Mortality after the hospitalization of a spouse. NEJM.
2006;354:719- 730.
8. Rosen A, Wu J, Chang BH, Berlowitz D, Ash A, Moskowitz M. Does diagnostic information contribute to predicting functional decline in long-term care? Med Care. 2000;38:647-59. Cited in Christakis NA, Allison PD.
9. Gill TM, Allore HG, Holford TR, Guo Z. Hospitalization, restricted activity, and the development of disability among older persons. JAMA. 2004;292:2115-24. Cited in Christakis NA, Allison PD.
10. Sprangers MA, de Regt EB, Andries F, et al. Which chronic conditions are associated with better or poorer quality of care? J Clin Epidemiol. 2000;53:895-907.
11. Thoits PA. Stress, coping, and social support processes: where are we? What next? J Health Social Behav. 1995;Special No.:53-79.
12. Cohen S, Doyle WJ, Skoner DP, Rabin BS, Gwaltney JM Jr. Social ties and susceptibility to the common cold. JAMA. 1997;277:1940-44.

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