Vision III: Reconnecting The Family

Aging Equals Complexity

The most pressing health demographic in the U.S. and worldwide is aging and its associated chronic burden of disease. This is not news. We have seen it coming and tried to plan for it. For decades our training schools, hospitals, certifications, insurance industry, housing industry, legal system, long term care providers and elder advocacy associations have focused on our aging populations and their unique needs and vulnerabilities.

Segmentation as a Strategy No Longer Works

In the process of appropriate focus, over a period of time, we have segmented off the over 65’s and the over 85’s from the rest of the human population. (1) This may have been appropriate in the early years, but today it hampers strategic health planning, resource allocation, and system wide organization of informal and formal family caregivers. One of the greatest challenges and opportunities in health reform today is the leveraging of virtual networks and wireless Internet technologies to reconnect the family and redefine the meaning of community. While Robert Putnam was writing “Bowling Alone” and lamenting what he perceived to be a decline in American community linkages as indicated by decreases in enrollment in bowling leagues in the 80’s and 90’s, other innovative sociologists, younger and tuned in to the web, saw a very different set of data points. (2) They saw social capital on a steep incline with nearly all the gains the result of virtual networks. (3) The question for health reformists then was “Could this be applied efficiently to reconnect an American health care system that had been deliberately sliced and diced, and segregated into self isolated professional silos?”

Rather then segment off any portion of the American family, we must now use technology and social networking to aggressively reconnect the generations to manage modern family complexity, mobility, health data and the distribution of responsibility in response as we move toward the provision of universal health care.

Today 50% of our country’s 60 year old’s have a parent alive. This means that the 4-generation family – grandparent, parent, child, grandchild – is rapidly supplanting the 3-generation family. By 2050 there will be over 1 million Americans over 100 years of age. That means that the 5-generation family – great-grandparent, grandparent, parent, child, grandchild – will have fully arrived. The challenge for our system is not simply numbers but also complexity, which is significantly more demanding when dealing with families that are four and five generations deep. (1)

Five Strategic Problems With Segmentation

A segmented approach, as numbers grow, becomes increasingly problematic. For one thing, it pits one generation against another in a “civil war of health financing”. Absent coordinated efficiencies, this creates a downward cycle with all roads leading to health rationing.

A second problem with generational segmentation is that it traps family learning’s and health traditions in multiple intergenerational divides. For example, the 58 year old 3rd generation mother caring for her 4th generation 82 year old mother with a fragile fracture from osteoporosis, should ideally not only be a rich source of caring (if properly supported and integrated into the health care system) but also a wise source of health information. While she is focusing on her mother’s independence, dignity and pain control, she should also be asking herself “How can I avoid becoming vulnerable to the same disease as my mother?” Her research and responses to questions of her doctors and other caregivers should tell her that silent osteoporosis exists in 52% of 3rd generation women by age 50, which is to say, she herself is vulnerable and should have a bone scan.  It should also make her aware of her own 27 year old daughter’s vulnerability since 98% of a women’s skeleton is formed by age 20. And it should also bring her 5 year old granddaughter’s activities into sharp relief since diet, exercise and health behaviors in these early years determine whether this 1st generation family member’s skeleton will be in good shape 15 years from now. Thus in a enlightened connected multi-generational family committed to each other’s health and well being, health learnings should continually and seamlessly flow down the intergenerational ladder, with the goal of constantly shrinking the entire family’s future disease burden.

A third problem inherent with a segmented family care system is that it traps informal family caregivers in a cavern of social isolation. Nearly 25% of American families have an informal family caregiver in place. Over 80% of these are family members and the vast majority are 3rd generation women, age 45 to 65. They currently labor in isolation without any formal and consistent structural, emotional or financial support. Twenty one percent of those with full time jobs resign their posts to manage the complex physical and psychological demands of their new responsibilities. If their parent has dementia, over 40% in one study are clinically depressed themselves. Many ignore their own health and become ill during this period. Some die before those for whom they are caring. They are disconnected from the formal care team and from other informal family caregivers who struggle in isolation themselves. Finally, they are often disconnected from their siblings and from children and grandchildren as the chaos, depression and complexity overwhelm them. (4)

A fourth problem associated with the artificial health segmentation of the American family is that it blocks early computer-assisted, health planning which is essential in a preventive health care system. Early planning is required to move us from intervention to prevention, and propel us ahead of the disease curve by customizing and personalizing care delivery. Academics have reinforced this point from many different angles, and highlighted the opportunity that new information technologies offer.

Dr. Edward Zigler, one of the true pioneers of Early Childhood Development, one of the founding fathers of Head Start and author of “The First Three Years and Beyond,” (5) recently made these observations at an event to honor parents, doctors and nurses involved in supporting economically disadvantaged mothers with nurturing home care services:

“For anyone who wants to know the literature, there is one really good book, probably the best book in human health in the past quarter of a century by Jack Shonkoff and Deborah Phillips titled ‘From Neurons To Neighboorhoods’. (6) The book describes among other subjects, the literature in support of early interventions that impact a baby’s brain development. Now this development, this recognition of brain plasticity, has not gone unnoticed by decision makers. The early brain research made clear that delaying interventions for poor children to Head Start beginning at age three was waiting too long. One of the interesting findings – they now have done randomized assigned outcome studies on the Early Head Start program – is that, lo and behold, the earlier you get there, particularly if you get there at pregnancy or shortly thereafter, the earlier you get to the child, the better your outcomes from the program.” (7)

Well-known medical educator and health transformer, Dr. Ralph Snyderman, Chancellor Emeritus at Duke University and head of the Duke Center for Research on Prospective Health Care recently published a classic article titled “Proposal for a new health record to support personalized, predictive, preventative and participatory medicine”, The paper challenges us all with these words, “Today’s approach to patient care and the medical record that directs and documents it is largely focused on identifying and treating the patients disease. This has resulted in a sporadic, reactive healthcare system. Shifting medicine’s focus to personalized strategic health planning will require a new approach to the patient ‘work-up’, a new relationship between the patient and the provider and a new medical record to support it.” (8)

Dr. Patricia Flatley Brennan, visionary health care leader who runs the Health Systems Lab,(9) a collaborative effort of the School of Engineering and the School of Nursing at the University of Wisconsin-Madison. Way back in 1991, seventeen years ago, Dr. Brennan published a paper called “ComputerLink: electronic support for the home caregiver.” In it, she and co-authors stated that, “Computers have become ubiquitous in contemporary society, as has the demand for home care for the elderly. Caregiving is recognized as a normal experience across the life span, and nurses must develop innovative responses to support caregivers. Computer networks offer caregivers access to a wide range of services such as communication, information, and decision support.” (10)

A fifth and final argument for family connectivity is that it allows us to better define the human resource needs for a modern health care team; better assign appropriate care teams and utilize these human resources with an eye toward multi-use for cross-generational assessments and services; and enables a more informed application of unique community resources to fill in the gaps where they exist.

Time To Get It Together

If there  was ever a time for Nursing and Medicine and Early Childhood Development leaders to join hands on behalf of patients, it’s now. And there is no better place to convene the gathering then in the American Home, and no better cause then the creation of a coordinate health system featuring intergenerational connectivity, multi-generational health planning and holistic health support. The concepts of Home Centered Health Care Transformation, Lifespan Planning Records, and the critical role that nurturing from zero to three plays in early brain development must now become cross-disciplinary and rapidly gain steam.

When virtual health networks first appeared, clinical visionaries at the time imagined an age of “telemedicine”. Dreamers thought the most pressing application would be to connecting knowledge and skills in developed nations with pressing needs in the developing world. In reality, we now understand that the true promise of innovative hardware and software combined with pervasive broadband and wireless networking is not somewhere around the world, but in our own backyards.

By reconnecting the multigenerational American family, we can plan more efficiently for health and integrate community resources. We can apply the learning’s in one generation to the benefit of other generations downstream while encouraging family caregiving to flow back up the generational ladder. We can most efficiently utilize a multi-purposed health workforce. These actions in turn make it possible to afford wellness and  prevention while maintaining our scientific and technologic progress.

References:

1.Alliance for Aging Research. “Medical Never-Never Land: Ten Reasons Why America Is Not Ready For the Coming Age Boom.” February 2002. http://www.agingresearch.org/brochures/nevernever/welcome.html.

2. Putnam R. Bowling Alone. 2000, http://www.bowlingalone.com/

3. Magee, Marc. Civic Participation and Social Capital: A Social Network Analysis in Two American Counties, in “Social Capital: an International Research Program”. Oxford University Press. 2008. http://www.oup.com/us/catalog/general/subject/Sociology/Economic/~~/dmlldz11c2EmY2k9OTc4MDE5OTU2NTk4Ng==?view=usa&sf=toc&ci=9780199565986

4. Magee M. Connecting Healthy Homes To A Preventive Health Care System. Harvard Health Policy Review. Fall, 2007. http://www.hcs.harvard.edu/~hhpr/currentissue/Fall2007.pdf

5. Zigler et al. The First Three Years and Beyond. http://www.amazon.com/First-Three-Years-Beyond-Perspectives/dp/0300103085/ref=sr_1_1?ie=UTF8&s=books&qid=1196261284&sr=1-1

6. Shonkoff JP et al. From Neurons To Neighborhoods. http://www.amazon.com/Neurons-Neighborhoods-Science-Childhood-Development/dp/0309069882

7. Personal Communication. New York City. October 23, 2007

8. Snyderman R and Yoediono Z. Proposal for a new health record to support personalized, predictive, preventative and participatory medicine January 2008, Vol. 5, No. 1, Pages 47-54 , DOI 10.2217/17410541.5.1.47 (doi:10.2217/17410541.5.1.47)

http://www.futuremedicine.com/doi/abs/10.2217/17410541.5.1.47

9. Breenan P. Health Systems Lab, University of Wisconsin. http://healthsystems.engr.wisc.edu/

10. Brennan PF et al. ComputerLink: electronic support for the home caregiver. ANS Adv Nurs Sci. 1991 Jun;13(4):14-27.
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=PubMed&Cmd=ShowDetailView&TermToSearch=2059002&ordinalpos=95&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

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