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December 9, 2004

Caregivers Face More Pressure Today, Pitt Aging Expert Insists

Since 1900, average life expectancy in the United States has risen from 47.3 years to 77.4 years, based on figures released recently by the federal government.

Advances in medicine over the past 50 years include virtual eradication of certain diseases such as polio and smallpox, the evolution of viable organ transplantation and, more recently, the burgeoning field of stem cell research.

Americans are living longer. That’s the good news.

The bad news is that the aging population – more than 77 million baby boomers will begin reaching Social Security eligibility age in 2011 – already has strained the U.S. health care system fiscally and introduced new and complicated medical, ethical and legal issues such as advance-care planning and end-of-life decisions.

In anticipation of growing aging-related concerns, Provost James Maher and Senior Vice Chancellor for Health Sciences Arthur Levine convened a council on aging here in 1999, bringing together experts from all 16 of Pitt’s schools. The council became a working group of researchers representing interdisciplinary approaches to aging-related problems.

In fall 2002, Pitt opened the Institute on Aging to coordinate the University’s research efforts, to link clinicians, educators and researchers and to attract grant money. The institute’s web site (www.aging.upmc.com/) is an on-line repository of information and links that bring together experts, from within and outside the University, in a wide variety of disciplines: physicians, psychologists, nurse practitioners, social workers, lawyers and others.

Richard Schulz, associate director of the Institute on Aging, Pitt professor of psychiatry and director of the University Center for Social and Urban Research, has devoted his career to researching and writing about adult development and aging. Recently, Schulz has focused on issues of family caregiving as principal investigator of a 10-year, National Institute of Mental Health-funded multi-site study investigating the health effects of caregiving among married couples.

He also serves as principal investigator of the coordinating center for the National Institute on Aging-funded multi-site dementia caregiving intervention trial. In recognition of his contributions to research on aging, he was the recipient of the Kleemeier Award from the Gerontological Society of America in 2000.

Schulz shared his insights with the University Times on “Aging: What the future holds,” the third in a series featuring Pitt experts’ predictions.

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“Speaking broadly,” Richard Schulz said, “there is a general consensus that the health care system is broken; it just doesn’t work anymore. It’s too expensive and it’s not effective, particularly for older people.”

In addition to the economic mess, the field of medicine itself is behind the curve on geriatric training, Schulz said, and there’s a similar deficiency in training for caregivers, who service the growing elderly population.

Other challenges include rectifying false perceptions of the effects of aging and tapping the market potential for those entering their golden years, he said.

While there is a nascent technology wave in progress to develop support services for the aging population, here too much more progress and incentives are needed, Schulz said.

“I suspect that, within the next decade or so, the increase of costs in combination with recognized deficiencies in what we do will converge to force us to deal with these broad issues sooner rather than later,” Schulz predicted. “One hopes we’d be more proactive, as opposed to having a passive response to a crisis, but we’ll see.”

Schulz sees some positive signs locally: the establishment and expansion of the services of the Institute of Aging, with its multidisciplinary approach and resources to educate, and Pitt’s new gerontology graduate certificate program, which exceeded enrollment expectations in its first cohort this fall (17 students enrolled where eight had been hoped for).

But, as a field, Schulz said, medicine is only in the very early stages of teaching students about gerontology. “There’s not much in the medical school curriculum, although even in the last year, we’ve seen some progress,” he said. “Medicine as a discipline on the whole has been very successful in the United States, and there’s a sense I think in which it wants to maintain the status quo. We tend to recruit researchers, and now there are more researchers in geriatrics, but that doesn’t necessarily trickle down to teaching. So it’s going to be slow to change. We need progress there, in combination with more grassroots education.”

A more educated population already is creating a different dynamic in the physician-patient relationship, which will continue into the future, Schulz said. “We’re in an environment where patients are asked to take more responsibility for their health care. We see more people tapping into the Internet. If you think you have a condition, you go to (the medical information web site) webmd. A person with a university education can actually become more well-informed about that condition than a general practitioner would be.”

More knowledgeable patients generally is a good thing, Schulz said. But, as a result, doctors have had to change their style. “In the long term, it does put more pressure on physicians to have to respond to patients’ information, which is changing the nature of the medical relationship,” he said. More well-informed patients also may explain partially the trend of doctors more readily referring patients to specialists, he added.

Another emerging trend in health care, particularly for the elderly and the disabled, is the general need for more caregivers. And that’s a problem because the number of family members serving as caregivers will decline, Schulz said. “Baby boomers had fewer kids, women are more likely to be in the labor force and families are spread out and have more separation through divorce and re-marriage,” he pointed out.

One consequence of that is a likely rise in more and larger retirement communities, but, so far, the aging population as a target market is underappreciated. “The aging market, the extent to which advertisers and businesses realize who that market is, has yet to feel the full force of baby-boomers becoming older,” Schulz said. “We’ve seen some signs of that changing, with more assistive devices and even with cosmetic surgery for the over-50,” but the cultural emphasis on youth as the prime market continues, Schulz said.

Regarding their personal care as they grow older, recent survey evidence indicates that people overwhelmingly want to receive care in their homes as opposed to an institution, want to choose who provides that care and want to manage the cost of care themselves.

Caregivers in the home are saving federal-funded medical programs some $250 billion a year, Schulz said. “But a greater concern is the dramatic increase in complexity of what caregivers are asked to do, that they’re not trained for. It’s always been known that it is demanding physically and psychologically, but we’ve discovered in our research of the caregiving experience from beginning to end that caregivers who are family members are more vulnerable to health risks themselves.”

Schulz led the first comprehensive research analysis of the emotional turmoil family-member caregivers experience during the transition of their loved one from home to a long-term care facility.

“We followed them from the home, through the placement experience, to their reactions from separation and then what happens when the cared-for person dies,” Schulz said. “There are some surprising outcomes, including that caregivers who turn over their loved one to an institution suffer symptoms of depression and anxiety as high as those of in-home caregivers.”

Knowing what the challenges are at each stage should lead to better strategies of how and when the health care professional might intervene to aid the caregiver, Schulz said.

Albeit imperfect, technology to aid caregivers in the home also can alleviate their stress and trauma.

“There are interactive web sites, memory aids, electronic systems that contact emergency services, sensor devices that monitor people in the home for falls, for example – a number of technologies in existence and many more on the horizon that provide some of the services of caregivers,” Schulz said. “There are interesting challenges in how some of these systems work, not the least of which is how the information gets moved, to whom and how much.”

Medical impairments in the elderly most often involve the health care provider, the patient and a family member, he said. “It’s an obvious observation, but we haven’t yet developed care systems that systematically take advantage of that, that distribute what information should be given to what person, for how these three people are supposed to work together.”

In part, these kinds of disconnects are remnants of society’s long-standing perception that the elderly and disabled are better off shunted into institutions and forgotten.

“For a long time the study of aging and gerontology, for political reasons and others, was based on a number of myths,” Schulz said. (See sidebar on this page.) “Those of us who do research and who write about aging have worked hard to promote a positive image, to promote the idea of healthy aging. Granted death is an inevitability – I don’t think there is any ‘aging gene’ – and because so many of us are living longer, many do slip into this concrete, dramatic period of decline, and really have no capacity. The problem is we have no defined system in place to take care of this, to divide the labor, to train family members and caregivers, to pay for care.”

What also is needed is the recognition that these problems require a multidisciplinary response, Schulz said.

“Instead of looking at individual conditions as purely medical problems, having an understanding of the context in which all of this appears, and how the context affects outcomes is one of the fundamental characteristics of all the issues we’ve been talking about,” he said.

“These are not a group of single, well-defined problems that you can develop a silver bullet for. They are complex issues, most of which have significant impact on the total quality of life of a particular individual, how it might lead to depression, how it affects other family members.”

One good sign is that, generally speaking, aging researchers have recognized this, avoiding turf wars between disciplines, Schulz said. “When we look at a disability, we don’t look at it just in terms of muscle and bones function. We look at it in a much broader context: How it affects the quality of life.

“There are people, of course, who are focused on a particular aspect of the problem, like brain chemistry in Alzheimer’s disease for example, and may not be concerned necessarily with the social consequences of dementia,” Schulz said. “But researchers now agree, if you’re interested in clinical studies of dementia, you certainly have to take an interdisciplinary approach and try to get a comprehensive understanding of the problem and your solution would most likely involve a whole range of interventions.”

-Peter Hart Schulz

Filed under: Feature,Volume 37 Issue 8

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